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The following is an abbreviated version of a much more detailed blog that can be found HERE. We sincerely appreciate Paul Mc Daid speaking up to raise awareness. ~MEI The illness that it's OK to mock by Paul Mc Daid (@paulthedaid) Every so often, something strange occurs in the British press. An offensive article is published about patients who suffer from a well known chronic disease. Sometimes it is by an esteemed researcher or physician, at other times by a respected journalist. There is no backlash or ruckus kicked up; it just happens, is accepted, and the world moves on. Heads don’t roll, regardless of any inaccuracies in the piece. If any complaints are made through the appropriate channels, a worryingly large section of the establishment rapidly closes ranks around the writer. The perpetrator of what is effectively a hate crime, becomes the victim. The illness in question is myalgic encephalomyelitis (ME). ME patients are sometimes labeled with ‘Chronic Fatigue Syndrome’ or CFS as well as ME/CFS. The arguments contained in such articles are often scurrilous and baseless, and are calmly refuted by ME charities and patient groups. But similar articles stubbornly return like summer flies to be swatted away. Efforts to repudiate the stories continue, based on rational lines of thought and scientifically legitimate evidence. But patients and charities are mocked, jeered at, and accused of harassment simply because they lobby for truth and justice. I doubt this would happen in any other disease. So why does it happen to us? Patients with ME are in the unenviable position of suffering from a disease that has no complete explanation, and no universally recognized treatment. Usually, the traditional solution begins with allocating levels of funding to study the disease commensurate with the suffering caused and incidence of the illness in the population. However, according to charities and patient groups, in the case of myalgic encephalomyelitis, funding falls pitifully short when compared to other similar illnesses. What is perhaps worse however, is that most of the funding is siphoned away by a small group of psychiatrists and psychologists who promulgate a psychosomatic theory of the disease that has been disproven many times over, but who also enjoy a disproportionate amount of influence within the British medical establishment and media. Their work has come in for fierce criticism from academics right around the globe, who say their studies and theories do not stand up to basic scientific scrutiny. When any patients complain however, they are branded as militants, activists, or worse - mental health deniers. The latter argument is particularly powerful and seductive, and consciously or unconsciously, deploying it allows the psychologists in question to behave more or less with scientific impunity. A few weeks ago, The Telegraph published an article by a regular GP columnist (How I became a target for the ME Militants, Dr Michael Fitzpatrick, 26th Sept), which raked over the old, tired accusations once again. The article suggests that ME patients don’t understand that psychology plays a role in their illness and instead have a ‘fixation with the minutiae of immunology.’ Well, no. Patients are in fact fixated with getting better, that is all. And, based on the best available science, immunology is one route we could follow to develop better understanding and treatment of this disease. Immunological studies in the USA and elsewhere have shown, since the 1980s in fact, huge abnormalities in ME patients that could account for the spectrum of immunological symptoms reported. Inflammation is seen in neuroimaging studies, and impaired metabolism and energy production have been clearly demonstrated in the laboratory. It is thought that the immune system is somehow blocking cellular metabolism, leading to the most well-known symptom of crushing physical and cognitive exhaustion. But in the British media, the idea that ME patients might wish to investigate immune system abnormalities is something to poke fun at apparently. Because the old story goes that we simply don’t grasp the fact that the human body is complicated, and the mind and body are connected. This is something that we already knew, and have always been on board with. It has never been the crux of the argument. As my own consultant, a respected Harley Street infectious diseases practitioner, puts it: ‘Your grandmother could tell you that if you stress an animal out it will get sick.’ The first thing he ever suggested I do when I met him was to meditate. The mind-body connection is something any enlightened physician or patient understands. It is a truth so obvious that it barely needs to be discussed. It is known technically as the biopsychosocial (BPS) theory of disease, and the ME lobby are time and time again accused of being cave-dwellers who deny its reality, and are afraid of the stigma of mental health playing any role in their illness. As such, the narrative suggests, we angrily reject any involvement of psychology in the battle to understand this complex disorder. Nothing could be further from the truth. Virtually every ME patient I know is aware that their psychological state may have affected how they became ill, and affects their condition on an ongoing basis. Psychological intervention is usually welcomed by all. Further, since inflammation of the brain is suspected in this disease, more serious psychiatric symptoms also play a major role. It is not psychology or psychiatry we are at war with – it is a very small group of researchers who have an appalling approach to scientific methodology and medical ethics. This political friction surrounding the management of ME dates back at least four decades, but is arguably more important now than ever before. Since the Covid pandemic began, roughly 5% of those infected with SARS-CoV-2 have gone on to develop lasting symptoms, that have identical properties to those seen in ME/CFS as defined by the IOM and the new NICE guidelines. This has led many Covid researchers around the world, including Dr Anthony Fauci, to conclude that at least a subset of these ‘Long Covid’ patients are in fact now suffering from ME/CFS. Some experts believe that the total number of those afflicted with ME & CFS – currently estimated at around 18 million globally – may triple as a result of Covid. Clearly, it is about time we resolved any lingering questions that surround how best to manage the disease, using the limited information we have at our disposal. In his article in the Telegraph, this is opposite of what Dr Michael Fitzpatrick endeavours to do, instead choosing to muddy the waters by dragging up old, out of date ideas and accusations. The thrust of the article concerns a recent debate about the treatment of CFS patients in the UK, that the author says bears a ‘striking resemblance’ to one that he became embroiled in himself two decades ago. At that time, he penned an offensive Op-Ed in the British Medical Journal expressing that in his considered opinion patients simply don’t grasp the fact that psychology and medicine overlap. But the current debate Michael Fitzpatrick is referring to in The Telegraph bears no resemblance whatsoever to anything that was being discussed twenty years ago. The recent disagreement surrounds the publication of new guidelines by the National Institute for Health and Care Excellence (NICE) on the best way to manage ME/CFS in the UK. NICE were due to publish new, updated guidelines in August after a three year review, but at the last minute were blocked by a small group of influential establishment figures. No-one has ever prevented NICE from publishing guidelines before – it was an utterly unprecedented occurrence. The ME community was upset, as we had been for many years attempting to overhaul the current treatment options for ME, based on patient experiences and new evidence. The existing NICE guidelines stated that a form of physiotherapy known as Graded Exercise Therapy, or GET should be offered by GPs and physios to anyone diagnosed with ME/CFS, based on research carried out by psychologists. However, patients have long claimed that this therapy is not only ineffective - but it actively makes them worse. GET has been the main form of treatment in the UK for decades, based on the psychosomatic model of the disease that has always been controversial. But as time passed, worrying reports began to emerge, suggesting not only were the therapies ineffective, but they were harmful. Most patients who underwent GET programs were getting worse, they said. Sometimes severely worse, and sometimes permanently. Dr Fitzpatrick bemoans the fact that NICE wanted to change their guidelines based on ‘scientific evidence’ (the inverted commas in this case, are his, and not mine), and have been bullied into this position by ‘ME militants’. The ‘evidence’ however, is not quack science that comes only from the ME lobby. It is evidence from Harvard, Columbia, Stanford, and similarly respected research centers. The evidence has now been studied very closely by independent and highly experience men and women at NICE for three years. I have never heard a doctor sneering at the idea of evidence before. It is one thing for scientists and doctors to disagree about the interpretation of evidence. But this is the first time I have heard a physician dismiss the concept of evidence so disdainfully. Dr Fitzpatrick also dismissively describes ME as a disease which causes ‘extreme tiredness and generally feeling unwell.’ This is probably the most inaccurate and trivialising description of the illness I have ever come across. Alas, none of this humiliation is new. There is a lengthy history of journalists attacking ME patients, and spreading misinformation about the illness and the behaviour of campaigners. Rod Liddle, who had once previously labelled ME sufferers ‘pretend disabled’, wrote in the Times in 2015: ‘They are hopping up and down with rage over at the ME association... At least they would be if they could. As it is, they are probably sitting quite still.’ He went on, ‘No matter what evidence is marshalled by the likes of Simon Wessely, some sufferers cling with grim and livid determination to a non-existent biomedical explanation.’ Mr Liddle has had a bee in his bonnet for a while about this illness, and has further smeared patients elsewhere. Describing the fervour with which ME patients have to protest and fight to gain access to medical treatment, he saw fit to opine in The Spectator magazine: ‘When it is finally proven that ME is a mental health disorder, I am convinced that it will be the least of their problems.’ The position of the ME community in the broader debate is easy to summarise: we know that the mind and body are linked. However, far too much funding has been spent purely on those who study the mind - specifically, a small section of the UK psychological community who ignore biomedical research. Of course, a holistic approach to medicine that includes psychology is the best way to approach any chronic disease. But you can approach holistic medicine by speaking to alternative health practitioners, by going online, and by reading self-help books. When you speak to your doctor or consultant, you want not just holistic advice, but conventional medical advice. If you were suffering from cancer, you would choose to be referred to an oncologist, not a psychologist. If you protested, would that mean you don’t understand that your illness is multi-faceted, with a psychological component? Of course not. But this is the ridiculous situation ME patients find themselves in when they ask that biomedical researchers have their research applications approved. Dr Fitzpatrick says however, that by ‘repudiating any recognition of psychological factors... ME advocates implicitly endorse stigmatisation of mental health disorders.’ Wait a minute - because we want a scintilla of biomedical funding in this field, we are guilty of undermining a separate group of illnesses that bear little resemblance to our own? As someone who has suffered from depression, and who has lost a close friend to suicide, I wholeheartedly reject any notion that we have stigmatised mental health disorders in any way. This is the kind of slanderous nonsense that we have to deal with on a constant basis. In 2017, after years of lobbying by the ME community, NICE announced that they were going to revisit their guidelines on the use of GET for ME/CFS. In November of last year, the draft guidelines were published. After three years spent scrutinising 1,500 peer reviewed scientific studies, a judgement call was made. There was no ambiguity. The draft guidelines stated that “there is NO evidence to support the use of GET as a treatment for ME/CFS, and due to reported harms from the ME community... it should not be offered as a treatment for this illness.” The guidelines continued, “There is no evidence that CBT is a cure for ME/CFS, and it should only be offered as a supportive therapy.” Everything that campaigners had been saying for decades finally had the support of the highest medical research authority in the land. Then of course, came the twist. The day before the guidelines were due to be published in August, the Royal College of Physicians and the Royal College of Psychiatrists announced that they would be telling their members not to follow the guidelines. In effect, the revision of the guidelines was being blocked. NICE had no choice but to ‘pause’ the publication. Since its inception, the purpose of NICE was to dispassionately, objectively review all scientific evidence and advise practitioners on what therapies and protocols were safe and effective. They had never been challenged, undermined, or blocked in this way. Dr Andrew Goddard, president of the Royal College of Physicians said in an interview with The Guardian, ‘GET is not without some risk, but benefits quite a lot of people.’ Technically speaking, you could say the same thing about thalidomide. The devil was in the details. What was the scale of the risk? What was the scale of the benefit? Repeated patient surveys from all across Europe had shown that the majority of those who undertook GET deteriorated, whilst only a small minority reported an improvement. Such a woolly, nebulous statement from a man of his office was shocking. In the end, after a roundtable discussion with all the concerned parties on October 19th, NICE opted to go ahead with publication of the new guidelines, despite the disgruntled Royal Colleges. It was a huge victory and vindication for ME patients. It underlined the fact that science is on the side of ME advocates, and ME advocates are on the side of science. Those who attacked us for lobbying were in fact themselves the poorly informed harassers. None of this could have happened if we had not rattled the cage. But this is just the beginning for us. This is just common sense prevailing – protecting patients from a dangerous therapy that is more likely to harm them than help them. Decades of lobbying just to get to this point, and always, always swimming against the tide. The UK psychiatrists in question have not given up, already publishing a paper and an article in the Daily Mail defending their ideas. Brian Hughes, a professor of psychology at the National University of Ireland in Galway, and author of ‘Psychology in Crisis’, believes they are suffering from denial and cognitive dissonance. They are unable to let go of therapies that they developed themselves, based on theories that they developed themselves, despite the fact that they have now been completely discredited. And so, the fight will continue. We don’t want to fight. We are exhausted, and want to get on with our lives. LINK The Dalai Lama once said that anger is never justified, but righteous indignation is sometimes necessary to remove injustice. Amaritya Sen, the Indian Nobel prize winning economist famously said that human beings have no definition for ‘justice’. Instead, he said, we must simply seek out injustice and remove it wherever we find it. That is all the ME community have ever tried to do. It’s hard to know how to react when I read articles like Dr Fitzpatrick’s. Should I just ignore it, and get on with my life, for the sake of my mental health and happiness? That is the advice of ME ‘activists’. Don’t get upset, don’t engage, lest you be branded a psychology denier and accused of online harassment. This is usually my approach. But then sometimes something in me snaps, and I think: if we don’t fight, nothing is going to change. Does this make me a militant? Actually, yes. Perhaps it does. Maybe I can give him that one. I have been recently converted. @paulthedaid ME International’s position is that myalgic encephalomyelitis is a complex, acquired multisystemic disease apart from CFS and ME/CFS, that all patients need to be screened for ME in accordance with the IC Primer, and all research labeled “ME” use the ICC.
See full position paper HERE.
1 Comment
UPDATE: 05 Nov 2021 ME International volunteers have created and submitted comments on the diagnosis codes presented at the ICD Coordination and Maintenance Committee meeting. A special thank you to Connie Faast (member volunteer) for her help in writing the response. Our submitted position includes the following: The following is ME International’s response to a request for input regarding the proposal to make changes to Postviral Fatigue Syndromes (G93.3) presented at the Sept 15, 2021 meeting of the ICD-10 Coordination and Maintenance Committee Meeting. ME INTERNATIONAL SUPPORTS THE FOLLOWING CHANGE:
To understand this response, please see our full submission HERE. If anyone would like to also submit comments, they should be sent to nchsicd10CM@cdc.gov BEFORE November 15th, 2021. Original Blog ------------ IN A NUTSHELL The problem presented is that there is no ICD code for ME/CFS. If you look below on the current proposed ICD codes, you will see that the US CDC are recommending adding ME/CFS and at the same time lumping ME/CFS, SEID, CFS and ME into the distinct code of G93.32 under G93 Other Disorders of brain. ME, ME/CFS, CFS, and post viral fatigue syndrome would all be listed under G93.3. This will certainly make it much easier for CDC & NIH as this would remove the necessity of bringing clarity in the diagnosis of each condition. IN BRIEF, HERE ARE THE PROBLEMS THIS PRESENTS: Myalgic Encephalomyelitis has been recognized by the World Health Organization as a neurological disease since 1969, and has a distinct disease code of G93.3. It has nothing to do with psychiatry, fatigue, or long covid. The ME International Consensus Criteria (ICC) was developed and approved by the world’s most science based, educated doctors in 2011 for ME. A defining symptom of ME patients includes PENE (post-exertional neuroimmune exhaustion). An ME-ICC diagnosis does not require a 6 month wait period. ME patients have various other health conditions such as cardiac issues, loss of thermostatic stability, neuroimmune dysfunction, subnormal body temperatures, and ME has also been associated with poliomyelitis. CFS is an illness that came on the radar in the 1980’s in Lake Tahoe, CA (much more to that story). The CDC did not consider the illness in Lake Tahoe as ME, so they gave it the new name of CFS. The Fukuda Criteria was developed in 1994 to better define CFS. CFS symptoms are vague, have a 6 month wait period, and include PEM (post exertional malaise) which is not a required symptom. Currently CFS has its own code of R53.82, under chronic fatigue, unspecified. Lack of education to medical technicians and doctors for both ME and CFS, has made it difficult to diagnose either patient group. ME and CFS are different illnesses with unique symptoms and each have different diagnoses and treatments. Unless the ICD codes are done correctly, many patients will be lost in the shuffle. That is why it is important that no one gets left behind and that there is clarity for all. WHAT IS THE SOLUTION THAT WILL SATISFY MOST STAKEHOLDERS? Most importantly, all ME and CFS patients need to be able to receive a diagnosis and treatment. This is currently a huge problem around the world!! A majority of people with both ME and CFS have not been diagnosed - this is millions of people! Diagnosis requires scientific evidence - which requires specific criteria. The ME-ICC has specific criteria for ME, and the IOM (now the National Academy of Medicine) created a new diagnosis criteria based mainly on CFS research. What is needed is a clarification by the CDC that the R53.82 code applies to the CFS-Fukuda definition and that G93.3 applies to the ME-ICC diagnosis and if someone is diagnosed using the ME/CFS criteria then they need to be further screened to clarify which patient group applies and use the appropriate code. SEID should not be added to the mix as it just adds another layer of confusion. ME, CFS, and Long Covid are all unique illnesses and require their own codes. DETAILS ABOUT THE PROPOSAL On Sept 15 Mary Dimmock on behalf of International Association for CFS/ME, #MEAction, Open Medicine Foundation, Solve M.E, Massachusetts ME/CFS & FM Association, Minnesota ME/CFS Alliance, and Pandora gave a presentation to the U.S. Centers for Disease Control’s ICD-10-CM Coordination and Maintenance Committee. This proposal was to add myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to the neurological chapter of the International Classification of Diseases. While the original proposal was to add ME/CFS, there were more changes brought in by the Coordination and Maintenance Committee, which resulted in the following proposal. Proposed changes would result in the following:   Thank you to Suzy Chapman, Dx Revision Watch for clarifying the changes to the ICD-10-CM coding on the Science for ME forum. Discussion on this topic can be found HERE. CURRENT U.S. ICD CODING  See FY 2021 release of the ICD-10-CM HERE. See HERE for the recording of the presentation. Passcode: $E33^Cb@ Presentation begins at: 04:22:25 ends at 04:40:38. See HERE for the proposal in the packet from the meeting. The proposal affecting ME starts on page 169. ICD codes are used worldwide and put out by the World Health Organization (WHO). ICD stands for International Classification of Diseases. These codes are then either adopted as a whole by a country or the country takes those codes and adapts them to their specific situation. The ICD codes are used to track healthcare statistics/disease burden, quality outcomes, mortality statistics, and billing. They are extremely important because they provide a common language for reporting and monitoring diseases. This allows the world to compare and share data in a consistent and standard way. The US is one of the countries that adapts the codes put out by the WHO. One of those adaptations that applies to the ME community is that ME and CFS in the US have separate diagnosis codes. CURRENT SITUATION Currently the diagnosis code for myalgic encephalomyelitis (ME) that U.S. doctors use is G93.3. There is a separate code of R53.82 when making a diagnosis for CFS. At this time the label ME/CFS does not have a diagnosis code so doctors are using either the G93.3 code or the R53.82 code depending on how they view the patient’s illness and depending on their level of understanding about ME and/or CFS. Chronic fatigue syndrome, as defined by Fukuda in 1994, has a very vague description that does not require post exertion malaise or post-exertional neuroimmune exhaustion. Doctors diagnosing patients with CFS capture a wide variety of fatiguing illnesses not related to ME. This labeling of people with CFS who do not have ME has led to research that has no application to the ME patient group. The result has led to the promotion of graded exercise and/or psychological treatments to cure CFS. ME International advocates for the distinct disease myalgic encephalomyelitis and recommends using the International Consensus Criteria (ME-ICC) and the International Consensus Primer (ME ICPrimer) to diagnose and treat ME. On page ii of the International Consensus Primer the experts, who based the ME ICPrimer on their experience with over 50,000 patients, state the following: “Name: Myalgic encephalomyelitis, a name that originated in the 1950s, is the most accurate and appropriate name because it reflects the underlying multi-system pathophysiology of the disease. Our panel strongly recommends that only the name ‘myalgic encephalomyelitis’ be used to identify patients meeting the ICC because a distinctive disease entity should have one name. Patients diagnosed using broader or other criteria for CFS or its hybrids (Oxford, Reeves, London, Fukuda, CCC, etc.) should be reassessed with the ICC. Those who fulfill the criteria have ME; those who do not would remain in the more encompassing CFS classification. 2. Remove patients who satisfy the ICC from the broader category of CFS. The purpose of diagnosis is to provide clarity. The criterial symptoms, such as the distinctive abnormal responses to exertion can differentiate ME patients from those who are depressed or have other fatiguing conditions. Not only is it common sense to extricate ME patients from the assortment of conditions assembled under the CFS umbrella, it is compliant with the WHO classification rule that a disease cannot be classified under more than one rubric. The panel is not dismissing the broad components of fatiguing illnesses, but rather the ICC are a refinement of patient stratification. As other identifiable patient sets are identified and supported by research, they would then be removed from the broad CFS/CF category.” ADDING A G93.32 code for ME/CFS and combining that with ME and CFS “The road to hell is paved with good intentions” HOW WILL A MILLION ME PATIENTS IN THE U.S. INFORM THEIR DOCTORS IF THERE IS A NEW CODE? It is true that ME/CFS does not have a diagnosis code. However, doctors can use the ME code if they are informed that is the proper course to take as is done on page 1 of the ME ICPrimer. An education campaign by all the organizations representing patients affected would make the need for changes to the ICD code unnecessary.  From page 1 of the IC Primer The ME ICPrimer has been part of the education offered by ME International for ME patients to share with their doctor. Many of us who have used this informative document have the G93.3 code in our records already. What happens if we can’t get our doctors to change the code in our records? Those with the R53.82 code will be attached to the label as “Chronic fatigue, unspecified.” The label in the records would no longer be attached to chronic fatigue syndrome. Could this affect disability rulings based on chronic fatigue syndrome? In a few years will anyone understand that R53.82 was anything other than chronic fatigue unspecified? Those with the G93.3 code will be attached to the label as “Postviral and related fatigue syndromes.” Imagine having a doctor who understands ME with the G93.3 code and then switching doctors or landing in an ER. They see the G93.3 code and equate that with postviral and related fatigue syndromes. Will a doctor viewing us with that label consider the special needs attached to ME? WHAT DO DOCTORS UNDERSTAND ABOUT ME/CFS? Those doctors who had knowledge of ME/CFS prior to 2015 will likely understand that label was attached to the Canadian Consensus Criteria (CCC) which is the precursor to the International Consensus Criteria (ICC). While this was an improvement over the vague Fukuda definition, the ME ICPrimer still recommends anyone with this diagnosis be re-screened to verify they have ME. Those doctors who are newer to the field are being educated that ME/CFS is the label used in place of the systemic exertion intolerance disease (SEID) label. This is the information now posted on the CDC website. That criteria is based on the report by the Institute of Medicine (IOM) which is now known as National Academy of Medicine (NAM). A comparison of the ME International Consensus Criteria (ME-ICC) and the IOM report (ME/CFS-IOM/NAM) show that there is a significant difference in the diagnosis of ME and ME/CFS. The IOM report recommendations were the outcome of using only those aspects of the illness that were common between ME and CFS. A comparison chart showing the difference between the ME-ICC and the ME/CFS-IOM/NAM criteria can be found HERE. Several distinct features of ME, which include the neurological changes, immune dysfunction and cardiac abnormalities, are not part of ME/CFS-IOM/NAM diagnosis. As patients, we often see that a doctor’s understanding of a disease is based on the name and what symptoms are listed in the diagnostic criteria. The patient community has seen first hand how having the chronic fatigue syndrome label with vague symptoms led to a psychological/behavior modification approach to treatment. In the 6 years since the IOM/NAM report was rolled out, doctors continue to follow the general advice given of treating patients with behavior modification, while very little medical intervention is offered other than recognition of the need for specialists to assess orthostatic intolerance. MORE QUESTIONS TO CONSIDER Will a change from ME and CFS having separate diagnosis codes getting changed to both ME and CFS having the same code bring clarity to diagnosis for ME? Will a doctor who has been trained to see chronic fatigue syndrome as a disease treated using cognitive behavior therapy (CBT) and graded exercise therapy (GET) change their approach to diagnosis and treatment? Might this change lead doctors, who only understand CFS as a psychological disease, to prescribe CBT and GET for all G93.32 patients no matter what label is given? Will a doctor who has little or no training about CFS or ME approach patients using the CFS diagnosis or the ME/CFS diagnosis or an ME diagnosis? Will a patient who currently has an ME diagnosis with the G93.3 code, be switched to the CFS or ME/CFS label in their medical records? On the other end of the spectrum - where does it leave patients with a CFS diagnosis that fit the ICC criteria? Will they be re-evaluated for ME or will they be dumped in the ME/CFS-IOM bucket with limited testing/treatments? Will this inclusive G93.32 code, that includes multiple patient groups, lead to continued lack of clarity in research? Will researchers who are not familiar with this field believe it is reasonable to assume that anyone with a CFS, ME/CFS or ME diagnosis with the G93.32 code can all be lumped together and still achieve accurate results? Researchers base their research on alike patient groups. WHAT COMES NEXT? ME International advocates for patients to be diagnosed using the ME International Consensus Primer and thus receiving proper treatment for those aspects of the disease specific to ME. With that in mind, we will be reviewing these questions and will submit a response with our recommendations before the deadline on Nov 15, 2021. "During the COVID-19 Pandemic, fax and regular mail is not currently being monitored and all communication should be sent via e-mail. Comments on the diagnosis proposals presented at the ICD Coordination and Maintenance Committee meeting should be sent to the following email address: nchsicd10CM@cdc.gov" We invite input from our members. Those can be posted in the comments or emailed to admin@ME-International.org We will update this blog with a link to our submission as soon as it is completed. ADDENDUM: The following is a clip from the presentation packet to show exactly how G93.3 will be affected as presented at the meeting. CHANGE TO ICD CODES FROM PRESENTATION PACKET  with Systemic exertion intolerance disease [SEID] added to the Index and also coded to the proposed new G93.32 sub-code.
 When patients do not come first NICE reported on August 17, 2021 they had paused the release of guidelines for treating myalgic encephalomyelitis and chronic fatigue syndrome. A draft appeared last November and the final version was initially scheduled for April, and reset for August. An August 17th article at The Times (UK) envisaged that any recommendations based on fixed incremental increases in physical activity or exercise, such as graded exercise (GET) and cognitive behavioral therapies (CBT), would be abandoned after evidence based science demonstrates that recommendations risk patients' health and compromise good clinical practices, and therefore should not be used. NICE guidelines set medical standards which will have a wide spread effect on treatment of ME and CFS patients worldwide. Doctors are expected to comply with those standards so medical education used worldwide will be based on these guidelines. Although it is always possible to refuse to follow a particular standard in any individual case, it is a professional burden for the doctor to follow guidelines. Right now, NICE guidelines in use are from 2007 and have promoted a psychiatric approach that has been shown to be unsafe for patients whose symptoms are exacerbated by GET. They have developed a treatment program causing harm, medical trauma, and institutionalized discrimination. Patient organizations have long been accused of anti-science activism. These proposed NICE guidelines went through a rigorous process, finding that GET and CBT were not scientifically shown to benefit ME patients. This delay in release of guidance that will change treatment protocols is based on resistance from some parts of the medical establishment with vested intewrests in continuing GET and CBT treatments and not on scientific evidence. In Georg Monbiot's words "@NICEComms has to decide whether it's science-based organisation, or whether it's beholded to a lobby group that refuses to let go of dangerous and long-discredited quack 'treatments' for ME/SFC". (@GeorgeMonbiot) This divergence of opinion may be caused by lumping ME and CFS under one umbrella (ME/CFS) Much has been written and discussed on whether myalgic encephalomyelitis (ME), myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), chronic fatigue syndrome (CFS), and systemic exertion intolerance disease (SEID aka ME/CFS) are the same disease, and whether the diagnostic criteria for ME, ME/CFS, CFS, CFS/ME, and ME/CFS-SEID select the same group of patients. Myalgic encephalomyelitis was initially described and/or defined, during the 20th century, by clinicians such as Ramsay, Dowset, Behan, and Hyde, as an enteroviral infectious neuromuscular disease that appeared either sporadic or at epidemic bursts. Later, government agencies from the USA and UK designed ad hoc "perverse" definitions, criteria and names that would turn the discourse of a serious biological illness onto a pathological malingerer that could create a false, or profoundly exaggerate, illness (physical or mental)j to gain external benefits such as avoiding work. The term chronic fatigue syndrome was then coined by psychiatric researchers and new broader criteria developed that would include up to 90% of patients with other pathologies. Psych lobby and media control The most important, biased, misleading, tortuous interference with real science was the PACE trial, which was signed by recognized British psychiatrists and media impact controlled by the Science Media Centre and the British Medical Journal. It cost $6.8M, financed among others by the Medical Research Council and the Department for Work and Pensions (UK). An important turning point was a Freedom of Information Act launched by a severely ill patient that would enable the release of the original database and show a flawed trial that did not support the use of CBT and GET. Sadly, the harm was done and NICE guidelines of ME and CFS followed the PACE trial's inaccurately reported results stating these were best practices for treatment. ME (Myalgic Encephalomyelitis) International (MEI) is an international association which promotes clarity: the non-standardized and overlapping definitions in the USA and other countries have resulted in an inability to compare results of multiple studies because those suffering from chronic fatigue syndrome (ICD code R53.82) and other vague criteria are mixed in with those suffering from ME (ICD G96.3). This premise is based on the use of the International Consensus Criteria (2011) and the accompanying primer (2012) for diagnosis and treatment. The ME IC Primer is a valid tool to diagnose and manage the disease and guides testing and treatment for those comorbidities or symptoms that can be treated. In addition, this primer offers tools that empower the patient. There is no recommendation of GET or CBT in this expert advice and as a whole, they move away from the biopsychosocial approach - know by many labels such as medically unexplained symptoms (MUS), central sensitization syndromes (CSS), which defend the existence of an erroneous message of pain or fatigue and an attitude of rejection/phobia of the patient as the basis of the disease. Global Leadership Committee - ME International
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 | Recently, in accordance with our mission statement of reducing loneliness, we established ME-I Chat Rooms. This is a specific Facebook group that utilizes rooms as its sole purpose. |
To Join
Become a member of the "ME-I Chat Room" FB group.
Found here: https://www.facebook.com/groups/1075615046269396
Once you are a member, just click a link to enter a room. Links will be posted as rooms open.
Please fill out the poll on the ME-I Chat Room post to help us know what hours works best for everyone.
Please consider becoming a member of ME International here: https://www.me-international.org/membership-application.html
Found here: https://www.facebook.com/groups/1075615046269396
Once you are a member, just click a link to enter a room. Links will be posted as rooms open.
Please fill out the poll on the ME-I Chat Room post to help us know what hours works best for everyone.
Please consider becoming a member of ME International here: https://www.me-international.org/membership-application.html
Recent Experience
This last week Heather, a chat room committee member, hosted a room every day for 2 hours and was happy to have met some kindred spirits. The plan is to continue to have a chat room every day from 10-12 am PST or 5-7 pm GMT. We hope to be able to provide some other times very soon.
Hosting a Room
Anyone is welcome to host a room at any time. If you may be open to hosting on some sort of regular basis, even if it’s only once a month, let us know. We understand things come up and we will work around your schedule and your well being. If something happens, another member will be able to cover.
Future Plans
We hope to have some more solid times in the near future. The more of us talking, the better it will be.
We’re always looking for people who may be interested in joining a committee so we can throw around ideas on how to make this great. Please reach out to Heather or any ME International board member if you are interested. We look forward to meeting you.
In the future, we will also be hosting event rooms to chat about topics like “What is ME International?”, “Understanding the International Consensus Criteria” as well as discussing the “International Consensus Primer”.
We’re always looking for people who may be interested in joining a committee so we can throw around ideas on how to make this great. Please reach out to Heather or any ME International board member if you are interested. We look forward to meeting you.
In the future, we will also be hosting event rooms to chat about topics like “What is ME International?”, “Understanding the International Consensus Criteria” as well as discussing the “International Consensus Primer”.
Our Hope
While we are up and running, we are still under construction so bear with us if you encounter a problem.
We hope that ME sufferers will feel less alone knowing people care and can be there for each other. We also hope it will enable people to connect and make new friends.
We hope that ME sufferers will feel less alone knowing people care and can be there for each other. We also hope it will enable people to connect and make new friends.
Benefits and Challenges
Dear fellow ME patients,
The ME International (ME-I) Board recently made a challenging decision to join the Long COVID Alliance. This Alliance, led by Solve ME/CFS, has a goal of making sure that ME/CFS patients are considered in the upcoming NIH Long COVID research funding awards. The US Congress appropriated $1.15 billion to the NIH for this research. At this time there are 50 organizations including ME-I who have signed this Alliance.
We are participating in this alliance BECAUSE it is important for: The ME patient population as defined by the IC Primer NOT be confused with the ME/CFS patient population.
There are valid concerns raised by the patient community since little progress has been made with respect to differentiating ME from CFS. We are aware that the decision may be viewed as diffusing our emphasis on ME. It is definitely not the case. ME-I remains committed to the position of supporting ME patients as defined by the IC Primer.
ME-I views the IC primer as a strong foundation for defining what ME is and how best to diagnose and treat it. We believe that this foundation provides a solid framework that can be built on with international patient input.
In making the decision to join the Long COVID Alliance, we considered the following benefits and challenges:
The ME International (ME-I) Board recently made a challenging decision to join the Long COVID Alliance. This Alliance, led by Solve ME/CFS, has a goal of making sure that ME/CFS patients are considered in the upcoming NIH Long COVID research funding awards. The US Congress appropriated $1.15 billion to the NIH for this research. At this time there are 50 organizations including ME-I who have signed this Alliance.
We are participating in this alliance BECAUSE it is important for: The ME patient population as defined by the IC Primer NOT be confused with the ME/CFS patient population.
There are valid concerns raised by the patient community since little progress has been made with respect to differentiating ME from CFS. We are aware that the decision may be viewed as diffusing our emphasis on ME. It is definitely not the case. ME-I remains committed to the position of supporting ME patients as defined by the IC Primer.
ME-I views the IC primer as a strong foundation for defining what ME is and how best to diagnose and treat it. We believe that this foundation provides a solid framework that can be built on with international patient input.
In making the decision to join the Long COVID Alliance, we considered the following benefits and challenges:
Benefits
- Advocating that research dollars are allocated to addressing ME as defined by the ME- ICC patient community
- Identifying clinicians and researchers that are best suited to represent ME patients
- Enhancing communication with other organizations who are confounding ME with CFS
Challenges
- ME-ICC definition is not recognized
- ME-I patient community voice is diminished in Long COVID Alliance communications
- Cycling back to what happened previously to the ME-ICC Community
ME-I is committed to managing these challenges by:
- Directly communicating our position to NIH, CDC, clinicians, and researchers independent of the Alliance
- Partnering with medical societies and other patient advocacy groups as appropriate
- Exiting the Alliance if our voice is not heard
At the end of the day, we felt it was important to have a voice at the table so we can collaboratively encourage NIH funding to be spent in a way that will benefit the ME community.
If you have questions or concerns, please email them to admin@me-international.org. We look forward to your insights and will be requesting further input on ME-International social media sites.
Jim Lutey, President
ME-International
 | UPDATED: 02 May 2021 The ME INTERNATIONAL CONSENSUS PRIMER (ICP) for medical practitioners is a valuable tool for working with your doctor to get diagnosis and treatment for myalgic encephalomyelitis (ME). Unfortunately, very few doctors are familiar with this important information. |
The Challenge
Doctors have limited time to devote to diagnosis and treatment. For complex diseases, like ME, doctors are at a disadvantage. ME, if mentioned at all, is not adequately covered in medical school or in continuing medical education. The latest research that helps experts and patients better understand ME does not reach the average doctor. This lack of proper information leads to many doctors using outdated information that includes harmful and or ineffective treatments including graded exercise therapy and cognitive behavior therapy.
The Situation
In 2012 expert clinicians put together the ME ICP to guide doctors in diagnosis and treatment of ME. The ICP provides information to better understand the biological abnormalities seen in ME that help guide best treatment practices. Some patients find compassionate doctors willing to use the information in the ICP to better care for their ME patients. Unfortunately, most doctors are unaware of what the ICP has to offer.
A Path Forward
ME International’s team of volunteers came together to create a two page info sheet which introduces doctors to the value of the ICP.
The goal was to create an easy to read information sheet to help doctors better care for ME patients.
The result is a doctor handout titled:
A MEDICAL PRACTITIONERS GUIDE FOR DIAGNOSING AND TREATING MYALGIC ENCEPHALOMYELITIS (ME)
There are four (4) versions:
The goal was to create an easy to read information sheet to help doctors better care for ME patients.
The result is a doctor handout titled:
A MEDICAL PRACTITIONERS GUIDE FOR DIAGNOSING AND TREATING MYALGIC ENCEPHALOMYELITIS (ME)
There are four (4) versions:
- color version with hyperlinks.
- black & white version for printing out (minimizes use of ink)
- in het Nederlands - Dutch
- en Español - Spanish
Feedback Appreciated
Please let us know if this document helped you do any of the following:
- Helped you better understand ME
- Empowered you to seek better professional care
- Improved your relationship with your doctor
- Led to more lab testing
- Led to improved treatment
In Addition
Thank you to Dr. Nigel Speight for the powerful message to physicians in the final quote on this doctor handout.
Dr. Speight is a paediatrician from the northeast of the UK (Durham) with a longstanding special interest in paediatric ME. He is the medical/paediatric adviser to several UK charities including the ME Association, the TYMES Trust and the 25% group. He has written a case report, Severe ME in Children, which can be found on the Severe ME page on our website and Dr. Speight was a co-author of the International Consensus Criteria for ME and the Paediatric Primer.
Dr. Speight is a paediatrician from the northeast of the UK (Durham) with a longstanding special interest in paediatric ME. He is the medical/paediatric adviser to several UK charities including the ME Association, the TYMES Trust and the 25% group. He has written a case report, Severe ME in Children, which can be found on the Severe ME page on our website and Dr. Speight was a co-author of the International Consensus Criteria for ME and the Paediatric Primer.
Authored by Colleen Steckel
UPDATED 20 Mar 2021 - In November 2020 it was decided by the ME International Board to ask for donations that would cover the cost of purchase and shipment of pulse oximeters to members.
NOTE: If you are a member of ME International and would like a pulse oximeter, please send a request email to Admin@ME-International.org with your name and address.
All of the board members who have myalgic encephalomyelitis have used pulse oximeters and other devices to measure heart rate and recognized the importance of having this vital information.
In preparation for sending out pulse oximeters the volunteers created an explanation sheet about the usefulness of pulse oximeters. Access the sheet HERE:
Be aware that multiple factors can affect the accuracy of a pulse oximeter reading, such as poor circulation, skin pigmentation, skin thickness, skin temperature, current tobacco use, and use of fingernail polish. To get the best reading from a pulse oximeter:
In December enough donations came in to purchase the first 50 BodyMed pulse oximeters at a discount through Milliken Medical of Ohio. A Thrivent Financial “Action Team” grant of $250 as part of their #LiveGenerously program was secured which helped cover the purchase. Individual donations came in to cover the remaining cost for the purchase as well as supplies and mailing costs.
Requests quickly came in from around the world. On January 8, 2021 the first shipment of pulse oximeters was sent out to members in the US, Canada, Norway, Australia and the UK. The entire project is managed by volunteers. Requests will be filled on a first come first serve basis. We are in the process of sending out the first 50.
Funds are needed to continue fulfilling requests. Please donate so we can continue this project. To see more information and to donate go to: https://www.me-international.org/pulse_oximeters.html A thank you to Lisa Edelsward (Canada) for the beautiful poem graphic on this donation page.
NOTE: If you are a member of ME International and would like a pulse oximeter, please send a request email to Admin@ME-International.org with your name and address.
All of the board members who have myalgic encephalomyelitis have used pulse oximeters and other devices to measure heart rate and recognized the importance of having this vital information.
In preparation for sending out pulse oximeters the volunteers created an explanation sheet about the usefulness of pulse oximeters. Access the sheet HERE:
Be aware that multiple factors can affect the accuracy of a pulse oximeter reading, such as poor circulation, skin pigmentation, skin thickness, skin temperature, current tobacco use, and use of fingernail polish. To get the best reading from a pulse oximeter:
- Follow the manufacturer’s instructions for use.
- When placing the oximeter on your finger, make sure your hand is warm, relaxed, and held below the level of the heart. Remove any fingernail polish on that finger.
- Sit still and do not move the part of your body where the pulse oximeter is located.
- Wait a few seconds until the reading stops changing and displays one steady number.
In December enough donations came in to purchase the first 50 BodyMed pulse oximeters at a discount through Milliken Medical of Ohio. A Thrivent Financial “Action Team” grant of $250 as part of their #LiveGenerously program was secured which helped cover the purchase. Individual donations came in to cover the remaining cost for the purchase as well as supplies and mailing costs.
Requests quickly came in from around the world. On January 8, 2021 the first shipment of pulse oximeters was sent out to members in the US, Canada, Norway, Australia and the UK. The entire project is managed by volunteers. Requests will be filled on a first come first serve basis. We are in the process of sending out the first 50.
Funds are needed to continue fulfilling requests. Please donate so we can continue this project. To see more information and to donate go to: https://www.me-international.org/pulse_oximeters.html A thank you to Lisa Edelsward (Canada) for the beautiful poem graphic on this donation page.
(updated 09/02/20)
WHY DO BRAIN SCANS? -
UNDERSTANDING ME & SPECT BRAIN SCANS
SPECT scans measure how blood flows into the brain at a point in time. Blood flow is impacted by many factors including diet, lifestyle, medications, age, and genetics. This is different than an MRI which looks for any abnormalities in the structure of the brain. Another option for testing is a functional MRI (fMRI) which looks at the brain in action (used mostly in research) and not available to anyone who has metal implants. Another thing to consider is an fMRI does not emit radiation, as magnetic forces are used to collect information. In a SPECT scan, the patient is exposed to a small amount of radiation.
More information about SPECT scans can be found in Dr Hyde’s writings from the Nightingale Research Foundation. The Nightingale Research Foundation Definition of Myalgic Encephalomyelitis (M.E.) (2016) booklet with information presented at the IACFS/ME Conference Fort Lauderdale, Florida and Cornell University (2016) has detailed SPECT information starting on page 11.
A Sept 2019 thesis paper titled Quantitative Electroencephalographic Assessment of ME/CFS: Support for a Novel Diagnostic Protocol by Andrew E Pellegrini discusses the findings of Dr. Hyde and showed qEEG testing could also be used to find abnormalities in ME patients.
MY EXPERIENCE GETTING A SPECT SCAN
In June 2020, my husband took me for two consecutive SPECT scans; a “thinking” scan on day one and a “resting brain” scan on day 2.
Working with CereHealth® personnel at CereScan®, who answered my multitude of questions, helped me feel confident this was a worthwhile endeavor to get the answers about the changes in cognition I had seen as a result of acquiring myalgic encephalomyelitis in 1989.
PREPARING FOR THE SCANS
A lengthy history/symptom questionnaire was done via my home computer. Options for filling out the questionnaire include online, pen and paper, or verbal (where CereHealth staff walks the patient through each question). Filling out the form can be done in multiple sittings.
A cognitive assessment was taken using my home computer. This had to be done all in one sitting and consisted of several different kinds of memory and cognition exercises.
NOTE: There is a loud bell sound at the beginning which shocked me as I wasn’t expecting it and I had my volume set too high. An improvement to their test would be to do a volume level test to make sure it’s at a reasonable volume and a notification so the sound is expected. The results from that showed very low scores in psychomotor speed, reaction time, simple attention and motor speed. Also, below average composite memory and verbal memory were noted. Those findings coincide with my daily experience.
Shortly before leaving for the scans, I did an intake interview over the phone. This covered making sure I knew what to expect and a chance to get any last-minute questions I had answered.
The day before the test, I stopped some medications that would interfere with the scans and was given routine instructions to avoid caffeine, alcohol, nicotine and marijuana.
NOTE: All of my work with CereHealth in Colorado was done via phone/email.
GETTING THE SCANS
CereHealth is based in Colorado but has coordinated with other outpatient radiology facilities to perform the test to their specifications. As everyone’s travel experience will be different, I won’t go into those details other than to say that traveling to Florida during the COVID-19 outbreak was a daunting experience, but the lab where I had the test done was making good efforts to keep everyone safe.
Day 1 – Scan at 8 am. Travel time to the office was about 40 minutes so we gave ourselves an hour to get there. Several warnings were given in the paperwork that the radiopharmaceutical injection used is time sensitive and being late to the appointment could result in not being able to perform the test and me being charged for the radiopharmaceutical.
The infusion is technetium Tc99m exametazime. I am highly reactive to most things and was concerned despite reassurances that others have had no issues. I felt no reaction at all to this injection. As is common for me, I tasted the saline used to prep the infusion line but, other than that, noticed no effects at all.
DAY 1 – CONCENTRATION – Process Details
As can be seen from the picture, I was allowed to wear my face mask for the procedure. This is nothing like an MRI. There is no thumping. The sounds I heard were closer to the sounds one would hear getting a dental x-ray; movement of the machine and then silence with occasional mechanical clicks.
As I understood the importance of not moving during the scans, I spoke with them about my involuntary muscle twitching and was pleased to learn they had a head strap as well as a Velcro body wrap that would help me to stay still. The head strap was comfortable across my forehead and the body wrap covered my upper body area using Velcro so it could be tightened to comfort. It was not uncomfortable and I felt more secure knowing that if I had a muscle spasm it was unlikely to affect the scans. A light blanket helped keep me from getting chilled during the procedure.
Here is the list of all of the partnering clinic locations CereHealth uses at this time:
According to CereHealth’s clinician: “CereScan’s affiliated clinics are located in areas where the GE radiopharmaceutical is accessible. We are limited by this accessibility and may not be able to partner with clinics in certain states/regions. Our sixteen clinics follow CereScan’s specific imaging protocols and their nuclear medicine technologists/staff are trained by CereScan’s Chief Nuclear Medicine Technologist.”
TEST RESULTS
The SPECT scans are read using CereMetrix®, which is an FDA-cleared radiology tool for SPECT analysis. Results are expected within about 2 weeks. These were emailed to me through a HIPAA secure email service. They were also sent to my doctor.
My results: “The nature, location, and pattern of these abnormalities is primarily consistent with the scientific literature pertaining to traumatic brain injury (TBI).”
An option at CereHealth after getting the lab results is to do a consultation which may not be covered by insurance.
The consultation included the overall understanding of how the scans were read. It was noted that the interpreting physician who read the scans has many years of experience and was not given my history or diagnosis prior to the reading; thus, doing a blind reading. He did review my medical history after the reading to provide context to the information found. This radiologist has a lot of experience and has testified as an expert witness.
As part of the video chat consultation, the clinician walked me through the scans using the software used to read the scans while I followed along on my computer screen. She was able to move images of the brain around and show inner regions and discuss the areas that showed abnormal blood flow. The interpreting physician read the scans using 2 points of deviation from normal. During the consultation, the clinician was able to alter the program to see my scans at 1.65 deviation of normal which expanded the areas of abnormality. (2 points of deviation are normal for reading brain scans.)
The findings helped to explain some of the following symptoms I deal with regularly: disorientation to time/place, headaches, muscle pain, confusion, difficulty with concentration, distractibility, disorganization, visual processing, depth perception, difficulty learning new things, losing things, problems with language/word finding, as well as long and short term memory problems.
NOTE: This consultation does not include a written report, so it is important to take good notes to look back on if needed.
CereHealth can provide a set of images (which are also included on your imaging report), and a CD of the raw data at your request. They can send the SPECT information to your neurologist, and their clinician can provide support if they have questions.
WHY 2 SCANS?
The resting scan is the normal method and that is the scan used to compare to a population database. The “thinking” scan has no population data to compare to so is only compared to the patient’s resting scan.
The following is a quote from the CereHealth clinician: “A normal, healthy response to the concentration task means that blood flow increases to the brain when it works harder. (Think about it this way: when you are running, your heart pumps faster and more blood flows through the heart. Same with the brain, but instead of running, you are thinking).
In cases where TBIs or other neurological conditions are present, we will actually see the opposite response, where blood flow decreases in the brain during concentration. Basically, the harder you ask your brain to work, the more it shuts down. This is a paradox (it is doing the inverse of what it should be doing) and the brain is deactivating (i.e. working less). This deactivation can come from a TBI, toxic injury, and is a common finding in a person with ADD/ADHD.”
WHY DO BRAIN SCANS? -
- Encephalomyelitis means: inflammation of the brain and spinal cord
- World Health Organization coded ME as a neurological disease in 1969.
- Research evidence demonstrates that ME has both structural and functional brain consequences including reduced resting brain blood flow, differing connectivity among brain regions, alterations of whole brain metabolism, reduced gray and white matter volume, increased presence of white matter lesions, increased neuroinflammation and altered brain function during cognition. See links to some brain research in the introduction of “Neural consequences of post-exertion malaise in ME/CFS”
- The ME International Consensus Primer (based on the International Consensus Criteria) was written in 2012 by a group of ME experts who had more than 500 years combined experience with myalgic encephalomyelitis. The Primer indicates the importance for brain scans to rule out other conditions as well as testing that can help confirm an ME diagnosis. Page 4 includes SPECT scan testing info to look for areas of hypoperfusion (reduced amount of blood flow) which are characteristic of ME.
UNDERSTANDING ME & SPECT BRAIN SCANS
SPECT scans measure how blood flows into the brain at a point in time. Blood flow is impacted by many factors including diet, lifestyle, medications, age, and genetics. This is different than an MRI which looks for any abnormalities in the structure of the brain. Another option for testing is a functional MRI (fMRI) which looks at the brain in action (used mostly in research) and not available to anyone who has metal implants. Another thing to consider is an fMRI does not emit radiation, as magnetic forces are used to collect information. In a SPECT scan, the patient is exposed to a small amount of radiation.
More information about SPECT scans can be found in Dr Hyde’s writings from the Nightingale Research Foundation. The Nightingale Research Foundation Definition of Myalgic Encephalomyelitis (M.E.) (2016) booklet with information presented at the IACFS/ME Conference Fort Lauderdale, Florida and Cornell University (2016) has detailed SPECT information starting on page 11.
A Sept 2019 thesis paper titled Quantitative Electroencephalographic Assessment of ME/CFS: Support for a Novel Diagnostic Protocol by Andrew E Pellegrini discusses the findings of Dr. Hyde and showed qEEG testing could also be used to find abnormalities in ME patients.
MY EXPERIENCE GETTING A SPECT SCAN
In June 2020, my husband took me for two consecutive SPECT scans; a “thinking” scan on day one and a “resting brain” scan on day 2.
Working with CereHealth® personnel at CereScan®, who answered my multitude of questions, helped me feel confident this was a worthwhile endeavor to get the answers about the changes in cognition I had seen as a result of acquiring myalgic encephalomyelitis in 1989.
PREPARING FOR THE SCANS
A lengthy history/symptom questionnaire was done via my home computer. Options for filling out the questionnaire include online, pen and paper, or verbal (where CereHealth staff walks the patient through each question). Filling out the form can be done in multiple sittings.
A cognitive assessment was taken using my home computer. This had to be done all in one sitting and consisted of several different kinds of memory and cognition exercises.
NOTE: There is a loud bell sound at the beginning which shocked me as I wasn’t expecting it and I had my volume set too high. An improvement to their test would be to do a volume level test to make sure it’s at a reasonable volume and a notification so the sound is expected. The results from that showed very low scores in psychomotor speed, reaction time, simple attention and motor speed. Also, below average composite memory and verbal memory were noted. Those findings coincide with my daily experience.
Shortly before leaving for the scans, I did an intake interview over the phone. This covered making sure I knew what to expect and a chance to get any last-minute questions I had answered.
The day before the test, I stopped some medications that would interfere with the scans and was given routine instructions to avoid caffeine, alcohol, nicotine and marijuana.
NOTE: All of my work with CereHealth in Colorado was done via phone/email.
GETTING THE SCANS
CereHealth is based in Colorado but has coordinated with other outpatient radiology facilities to perform the test to their specifications. As everyone’s travel experience will be different, I won’t go into those details other than to say that traveling to Florida during the COVID-19 outbreak was a daunting experience, but the lab where I had the test done was making good efforts to keep everyone safe.
Day 1 – Scan at 8 am. Travel time to the office was about 40 minutes so we gave ourselves an hour to get there. Several warnings were given in the paperwork that the radiopharmaceutical injection used is time sensitive and being late to the appointment could result in not being able to perform the test and me being charged for the radiopharmaceutical.
The infusion is technetium Tc99m exametazime. I am highly reactive to most things and was concerned despite reassurances that others have had no issues. I felt no reaction at all to this injection. As is common for me, I tasted the saline used to prep the infusion line but, other than that, noticed no effects at all.
DAY 1 – CONCENTRATION – Process Details
- Explain and set up IV line
- Give electronic tablet and have patient start the test activity
- Wait 5 minutes and inject Tc99M
- Wait 10 minutes and take tablet away
- Scan after 1 hour post injection (scan takes about 20 minutes)
- Explain and set up IV line
- Put headphones and eye mask on
- Wait 15 minutes to inject Tc99M
- Scan after 1 hour post injection (scan takes about 20 minutes)
As can be seen from the picture, I was allowed to wear my face mask for the procedure. This is nothing like an MRI. There is no thumping. The sounds I heard were closer to the sounds one would hear getting a dental x-ray; movement of the machine and then silence with occasional mechanical clicks.
As I understood the importance of not moving during the scans, I spoke with them about my involuntary muscle twitching and was pleased to learn they had a head strap as well as a Velcro body wrap that would help me to stay still. The head strap was comfortable across my forehead and the body wrap covered my upper body area using Velcro so it could be tightened to comfort. It was not uncomfortable and I felt more secure knowing that if I had a muscle spasm it was unlikely to affect the scans. A light blanket helped keep me from getting chilled during the procedure.
Here is the list of all of the partnering clinic locations CereHealth uses at this time:
- Littleton, Colorado (headquarters)
- Sheffield, Alabama
- Scottsdale, Arizona
- Tucson, Arizona
- Encinitas, California
- Laguna Hills, California
- San Francisco, California
- Naples, Florida
- Ocoee, Florida (Orlando area)
- Tampa, Florida
- Arlington Heights, Illinois (Northern Chicago)
- Metairie, Louisiana
- Monroe, New York
- El Paso, Texas
- Houston, Texas
- Dallas, Texas
According to CereHealth’s clinician: “CereScan’s affiliated clinics are located in areas where the GE radiopharmaceutical is accessible. We are limited by this accessibility and may not be able to partner with clinics in certain states/regions. Our sixteen clinics follow CereScan’s specific imaging protocols and their nuclear medicine technologists/staff are trained by CereScan’s Chief Nuclear Medicine Technologist.”
TEST RESULTS
The SPECT scans are read using CereMetrix®, which is an FDA-cleared radiology tool for SPECT analysis. Results are expected within about 2 weeks. These were emailed to me through a HIPAA secure email service. They were also sent to my doctor.
My results: “The nature, location, and pattern of these abnormalities is primarily consistent with the scientific literature pertaining to traumatic brain injury (TBI).”
An option at CereHealth after getting the lab results is to do a consultation which may not be covered by insurance.
The consultation included the overall understanding of how the scans were read. It was noted that the interpreting physician who read the scans has many years of experience and was not given my history or diagnosis prior to the reading; thus, doing a blind reading. He did review my medical history after the reading to provide context to the information found. This radiologist has a lot of experience and has testified as an expert witness.
As part of the video chat consultation, the clinician walked me through the scans using the software used to read the scans while I followed along on my computer screen. She was able to move images of the brain around and show inner regions and discuss the areas that showed abnormal blood flow. The interpreting physician read the scans using 2 points of deviation from normal. During the consultation, the clinician was able to alter the program to see my scans at 1.65 deviation of normal which expanded the areas of abnormality. (2 points of deviation are normal for reading brain scans.)
The findings helped to explain some of the following symptoms I deal with regularly: disorientation to time/place, headaches, muscle pain, confusion, difficulty with concentration, distractibility, disorganization, visual processing, depth perception, difficulty learning new things, losing things, problems with language/word finding, as well as long and short term memory problems.
NOTE: This consultation does not include a written report, so it is important to take good notes to look back on if needed.
CereHealth can provide a set of images (which are also included on your imaging report), and a CD of the raw data at your request. They can send the SPECT information to your neurologist, and their clinician can provide support if they have questions.
WHY 2 SCANS?
The resting scan is the normal method and that is the scan used to compare to a population database. The “thinking” scan has no population data to compare to so is only compared to the patient’s resting scan.
The following is a quote from the CereHealth clinician: “A normal, healthy response to the concentration task means that blood flow increases to the brain when it works harder. (Think about it this way: when you are running, your heart pumps faster and more blood flows through the heart. Same with the brain, but instead of running, you are thinking).
In cases where TBIs or other neurological conditions are present, we will actually see the opposite response, where blood flow decreases in the brain during concentration. Basically, the harder you ask your brain to work, the more it shuts down. This is a paradox (it is doing the inverse of what it should be doing) and the brain is deactivating (i.e. working less). This deactivation can come from a TBI, toxic injury, and is a common finding in a person with ADD/ADHD.”
My scans showed this abnormality as can be seen in this comparison between my brain at baseline and during concentration.
Comparing my results to the IC Primer
Part of the consultation explained the difference between Segami software (what is shown in the IC Primer) and the CereMetrix software. CereHealth previously used Segami software so they have experience to discuss comparison. Some limitations to Segami include an inability to share the scan technology for others to review the scans as well as Segami did not have the details in the subcortical area of the brain that Ceremetrix provides. (Info on Segami from 2018 so that may have changed since then.)
The top picture on the right, from page 4 of the IC Primer, shows a white area. That area is a lack of information which my scans included. My scans did not show the same pattern of blood flow issues as shown in the Primer, but it did show some areas that overlapped.
“SPECT imaging can identify what is called a “toxic/hypoxic encephalopathy”. This type of neurological condition can result from a single exposure and/or chronic exposure to an environmental toxin such as carbon monoxide, mold, heavy metals, Lyme disease, HHV-6 (and other viruses) and even substance abuse (alcohol, cocaine, heroin, etc.). This process can also occur after a hypoxic event, where the brain was deprived of oxygen (such as a near-drowning experience, problems with anesthesia, anaphylaxis, etc.).
A toxic/hypoxic encephalopathy in SPECT imaging is described as a “patchy, diffuse, scattered pattern” of reduced blood flow. In this type of injury, almost all brain areas can be affected, including the subcortical structures. In a traumatic brain injury pattern, we see what are called “focal, dominant, or more specific” areas of reduced blood flow. In many cases, the mechanism of injury relates to where the radiologist sees damage in the brain. For example, a football player who makes helmet-to-helmet contact and has a concussion/TBI may show a focal area of reduced blood flow in his forehead region (frontal lobe), and other parts of the brain may appear unaffected.” The source for this information is the clinician at CereHealth
COST
Here is the information for insurance:
CereHealth indicated that one resting scan should be sufficient to see any abnormalities that might help diagnose ME. I found the comparison between the two provided information that may prove valuable. The current cash rates for this procedure are:
WAS IT WORTH IT FOR ME?
Prior to this test, I had only one other brain scan which was an MRI to rule out Multiple Sclerosis. There were no findings noted by the neurologist on the MRI. Because ME can be mistaken for MS, it is important early in the diagnosis process to have MS ruled out.
Confirming an ME diagnosis is a long process. Getting these SPECT scan results, even though it was 30 years since onset, gave me and my medical team a better understanding of what was happening and verified my limitations were based on biological issues and had nothing to do with my attitude.
I am grateful that my scans could also benefit future research. Early in the process I was excited to learn that CereHealth has conducted multiple studies and participated in projects with various Contract Research Organizations. CereHealth’s software has the ability to gather a wealth of deidentified patient data to run correlational analyses and quantify SPECT imaging data. Their team has the connections to quickly mobilize an active or retrospective study to further examine complex neurological conditions. They encourage patients to authorize the release of their health information into their deidentified database so these studies may be performed to contribute to the medical field and benefit other patients in the future. I gave permission to have my scans available for future study.
CONFIRMING AN ME DIAGNOSIS IS A LONG ROAD
One of the benefits of the IC Primer is it provides a flashlight in the dark forest we all wander through trying to find answers. Using the IC Primer has provided me insight into the symptoms and disease process to feel confident I have been properly diagnosed. It has also given me management and treatment tools to improve my quality of life.
There is nothing easy about living with ME, but making sure our medical team is using the most accurate and up to date information and proper testing can significantly improve quality of life for those dealing with ME.
Colleen Steckel – Sudden onset Myalgic Encephalomyelitis August 1989
Disclaimer: I was given no discount or financial gain from CereHealth. This is my personal experience and not to be considered medical advice.
“SPECT imaging can identify what is called a “toxic/hypoxic encephalopathy”. This type of neurological condition can result from a single exposure and/or chronic exposure to an environmental toxin such as carbon monoxide, mold, heavy metals, Lyme disease, HHV-6 (and other viruses) and even substance abuse (alcohol, cocaine, heroin, etc.). This process can also occur after a hypoxic event, where the brain was deprived of oxygen (such as a near-drowning experience, problems with anesthesia, anaphylaxis, etc.).
A toxic/hypoxic encephalopathy in SPECT imaging is described as a “patchy, diffuse, scattered pattern” of reduced blood flow. In this type of injury, almost all brain areas can be affected, including the subcortical structures. In a traumatic brain injury pattern, we see what are called “focal, dominant, or more specific” areas of reduced blood flow. In many cases, the mechanism of injury relates to where the radiologist sees damage in the brain. For example, a football player who makes helmet-to-helmet contact and has a concussion/TBI may show a focal area of reduced blood flow in his forehead region (frontal lobe), and other parts of the brain may appear unaffected.” The source for this information is the clinician at CereHealth
COST
Here is the information for insurance:
- SPECT imaging falls under radiology
- CPT codes:
- 78803 - Radiopharmaceutical localization of tumor or distribution of radiopharmaceutical agent(s); tomographic (SPECT)
- A9521 - Technetium tc-99m exametazime, diagnostic, per study dose
- 78835 - Other Diagnostic Nuclear Medicine Procedures
- 99205 - New Patient Office or Other Outpatient Services
- 90889 - Other Psychiatric Services or Procedures
CereHealth indicated that one resting scan should be sufficient to see any abnormalities that might help diagnose ME. I found the comparison between the two provided information that may prove valuable. The current cash rates for this procedure are:
- $50 Cognitive assessment (computer from home – optional)
- $50 Psychiatric Screen (completed during the intake phone call – optional)
- $2,600 1 resting brain SPECT scan – reimbursable by some insurance (Cerescan staff can help look into what is covered)
- $4,400 total for two scans (resting and active) (Second scan may need follow-up paperwork to get insurance to cover cost and they may not cover this second scan.)
- $150 Consultation (optional)
WAS IT WORTH IT FOR ME?
Prior to this test, I had only one other brain scan which was an MRI to rule out Multiple Sclerosis. There were no findings noted by the neurologist on the MRI. Because ME can be mistaken for MS, it is important early in the diagnosis process to have MS ruled out.
Confirming an ME diagnosis is a long process. Getting these SPECT scan results, even though it was 30 years since onset, gave me and my medical team a better understanding of what was happening and verified my limitations were based on biological issues and had nothing to do with my attitude.
I am grateful that my scans could also benefit future research. Early in the process I was excited to learn that CereHealth has conducted multiple studies and participated in projects with various Contract Research Organizations. CereHealth’s software has the ability to gather a wealth of deidentified patient data to run correlational analyses and quantify SPECT imaging data. Their team has the connections to quickly mobilize an active or retrospective study to further examine complex neurological conditions. They encourage patients to authorize the release of their health information into their deidentified database so these studies may be performed to contribute to the medical field and benefit other patients in the future. I gave permission to have my scans available for future study.
CONFIRMING AN ME DIAGNOSIS IS A LONG ROAD
One of the benefits of the IC Primer is it provides a flashlight in the dark forest we all wander through trying to find answers. Using the IC Primer has provided me insight into the symptoms and disease process to feel confident I have been properly diagnosed. It has also given me management and treatment tools to improve my quality of life.
There is nothing easy about living with ME, but making sure our medical team is using the most accurate and up to date information and proper testing can significantly improve quality of life for those dealing with ME.
Colleen Steckel – Sudden onset Myalgic Encephalomyelitis August 1989
Disclaimer: I was given no discount or financial gain from CereHealth. This is my personal experience and not to be considered medical advice.
UPDATED 5/30/20 - Added links to the scripts of both videos (below).
ME International has recently released its first video, entitled "Myalgic Encephalomyelitis - Understanding Diagnosis" on our YouTube Channel.
Click HERE for the LONG version - Transcript
Click HERE for the SHORT version - Transcript
Topics include:
Many different disease descriptions have been created since the recognition and labeling of ME by Dr. Ramsay in the 1950s. Several criteria later broadened the patient population to include many patients who did not fit the original description.
In 2011 a group of experts with over 500 years of combined experience created a consensus criteria known as the International Consensus Criteria (#MEICC). ME-International supports the adoption of the #MEICC and the International Consensus Primer for ME (#MEICPrimer), which is a comprehensive primer for doctors.
We strongly believe that adoption of the #MEICC will ensure research is focused on the distinct ME patient population without including patients who fall into the wider category known as ME/CFS-SEID or CFS-Fukuda.
These videos discuss the history of ME, the lived experience, including recognition of the most severe patients, a full description of how to diagnose using the International Consensus Criteria as well as the challenges of getting a diagnosis. Proper diagnosis is vital for patients to get proper treatment.
ME-International believes that worldwide adoption of the #MEICC to diagnose and treat, is the fastest way to improve the quality of life of people with ME.
Information not to be considered medical advice.
https://www.ME-International.org
https://www.meadvocacy.org/resources
https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html
ME ICC: https://onlinelibrary.wiley.com/doi/full/10.1111/j.1365-2796.2011.02428.x
IC Primer: https://d3n8a8pro7vhmx.cloudfront.net/meadvocacy/pages/2292/attachments/original/1554817421/Myalgic_Encephalomyelitis_International_Consensus_Primer_2012.pdf?1554817421
Please sign the #PwME4ICC petition at Change.org at https://www.change.org/p/the-us-department-of-health-and-human-services-cdc-adopt-the-distinct-disease-myalgic-encephalomyelitis-me-as-defined-by-icc-now
ME International has recently released its first video, entitled "Myalgic Encephalomyelitis - Understanding Diagnosis" on our YouTube Channel.
Click HERE for the LONG version - Transcript
Click HERE for the SHORT version - Transcript
Topics include:
- What is Myalgic Encephalomyelitis?
- ME: The Lived Experience
- How Does ME Relate to CFS?
- Getting A ME Diagnosis
- Confirming A Diagnosis of ME
- What Is Needed?, and
- How To Improve the Quality of Life for ME Patients
Many different disease descriptions have been created since the recognition and labeling of ME by Dr. Ramsay in the 1950s. Several criteria later broadened the patient population to include many patients who did not fit the original description.
In 2011 a group of experts with over 500 years of combined experience created a consensus criteria known as the International Consensus Criteria (#MEICC). ME-International supports the adoption of the #MEICC and the International Consensus Primer for ME (#MEICPrimer), which is a comprehensive primer for doctors.
We strongly believe that adoption of the #MEICC will ensure research is focused on the distinct ME patient population without including patients who fall into the wider category known as ME/CFS-SEID or CFS-Fukuda.
These videos discuss the history of ME, the lived experience, including recognition of the most severe patients, a full description of how to diagnose using the International Consensus Criteria as well as the challenges of getting a diagnosis. Proper diagnosis is vital for patients to get proper treatment.
ME-International believes that worldwide adoption of the #MEICC to diagnose and treat, is the fastest way to improve the quality of life of people with ME.
Information not to be considered medical advice.
https://www.ME-International.org
https://www.meadvocacy.org/resources
https://www.cdc.gov/me-cfs/symptoms-diagnosis/symptoms.html
ME ICC: https://onlinelibrary.wiley.com/doi/full/10.1111/j.1365-2796.2011.02428.x
IC Primer: https://d3n8a8pro7vhmx.cloudfront.net/meadvocacy/pages/2292/attachments/original/1554817421/Myalgic_Encephalomyelitis_International_Consensus_Primer_2012.pdf?1554817421
Please sign the #PwME4ICC petition at Change.org at https://www.change.org/p/the-us-department-of-health-and-human-services-cdc-adopt-the-distinct-disease-myalgic-encephalomyelitis-me-as-defined-by-icc-now
Authored by John Duncan UPDATED 4/29/20
Perhaps one of the most characteristic signs of Myalgic Encephalomyelitis (ME) is the intolerance to any type of exertion whether it is of a passive type brought on by surroundings (hearing a voice, seeing lights), or an effortful type (lifting a cup, holding a conversation). Given this bizarre sign, it is only natural that for many of us and many doctors, the mitochondrion has been a perennial suspect.
Unfortunately, by the end of the 1990s many early findings regarding the mitochondria, such as increased enteroviral RNA in patient's muscle mitochondria [1], deletions of mitochondrial DNA [2][3] and abnormal mitochondrial morphology [2][4] were not followed up or not replicated by other studies.
However, virtually all of the research in the 1990s and 2000s is fraught with inappropriately using heterogeneous groups of patients due to bad definitions, small sample sizes and widely varying diagnostic experience by study investigators. When two studies are at odds it is often unclear which to accept and which to reject. In the case of the mitochondria, it is very tempting to believe some of the reports of abnormalities were not given a fair chance due to follow-up studies selecting different groups of patients as a consequence of the Fukuda or Oxford Criteria.
Unfortunately, by the end of the 1990s many early findings regarding the mitochondria, such as increased enteroviral RNA in patient's muscle mitochondria [1], deletions of mitochondrial DNA [2][3] and abnormal mitochondrial morphology [2][4] were not followed up or not replicated by other studies.
However, virtually all of the research in the 1990s and 2000s is fraught with inappropriately using heterogeneous groups of patients due to bad definitions, small sample sizes and widely varying diagnostic experience by study investigators. When two studies are at odds it is often unclear which to accept and which to reject. In the case of the mitochondria, it is very tempting to believe some of the reports of abnormalities were not given a fair chance due to follow-up studies selecting different groups of patients as a consequence of the Fukuda or Oxford Criteria.
The Need for Good Selection Criteria in Practice
The problem of selecting a single disease picture and not many, can be solved by using a rigorous criteria of selection such as the International Consensus Criteria (ICC). It can likely be decreased by using criteria of selection which require the cardinal signs and symptoms of Myalgic Encephalomyelitis; such as the Canadian Consensus Criteria (CCC). Lastly, if the patient group is very severe and has been tested for alternative diagnoses, the study is more likely to be applicable to ME patients at large. This is assumed because many disorders like Sleep Apnea, Chronic Headaches, Nonspecific chronic pain which fall into a broad criteria (e.g. CDC's Fukuda definition) are not likely to have the severe drop of function seen in the worst-off ME patients.
Hopefully the use of stringent criteria for ME, larger study sizes, and the ability to group patients by temporal stages, will prevent current studies from repeating the mishmash of past decades.
The problem of selecting a single disease picture and not many, can be solved by using a rigorous criteria of selection such as the International Consensus Criteria (ICC). It can likely be decreased by using criteria of selection which require the cardinal signs and symptoms of Myalgic Encephalomyelitis; such as the Canadian Consensus Criteria (CCC). Lastly, if the patient group is very severe and has been tested for alternative diagnoses, the study is more likely to be applicable to ME patients at large. This is assumed because many disorders like Sleep Apnea, Chronic Headaches, Nonspecific chronic pain which fall into a broad criteria (e.g. CDC's Fukuda definition) are not likely to have the severe drop of function seen in the worst-off ME patients.
Hopefully the use of stringent criteria for ME, larger study sizes, and the ability to group patients by temporal stages, will prevent current studies from repeating the mishmash of past decades.
Recently, in trying to develop an assay for ME, the Ron Davis group at Stanford found an altered electrical signal (impedance) in patients' cells when subjected to osmotic stress [5]. This suggests in a harsh environment patients' cells don't have the energy to maintain their voltage gradients–unlike normal cells which do. Besides its usefulness as a diagnostic, Davis's finding also implicates deficient cellular energy, and therefore the mitochondria, in ME patients.
Other Studies Directly Implicate the Mitochondria
Julia Newton's group at Newcastle University found reduced mitochondria function [6] in both severely and moderately affected patients. Interestingly, they found "disease severity does not correlate with mitochondrial function and even those with a moderate form of the disease show evidence of mitochondrial dysfunction." This means the mitochondria function is more like a switch flipped for all patients than a gradient of effect or finding only in a subset. However, severely affected patients did have greater respiratory acidification due to impairments in glycolysis not seen in moderate ones. A straightforward interpretation would be impairment to mitochondrial function is a prerequisite for disease but that downstream effects of disease can impair vital cellular processes like glycolysis.
Another new study by Bhupesh Prusty of the University of Wurzburg, and UCSD’s Robert Naviaux has found that mitochondria from ME patients show dramatic fragmentation in comparison to controls [7][8].
In an experiment with culture cells with latent HHV-6 (containing Human Herpesvirus 6 DNA–but not actual virus particles) chemical reactivation of HHV-6 resulted in the production of several viral RNAs but not major viral proteins. Significantly, Prusty and Naviaux found HHV-6 reactivation induced mitochondrial fragmentation, oxidative changes, and decreased antiviral resistance. When fluid from the cell culture of the HHV-6 reactivated cells was transferred to a new group of cells (not exposed to HHV-6), mitochondrial fragmentation and oxidative changes also occurred in these cells but with increased antiviral resistance! [8]
The last experiment involved transferring not HHV-6 infected cell culture fluid but rather blood serum from ME patients to new cells. This serum transfer induced an identical state of mitochondrial fragmentation, oxidative change, and antiviral resistance! These experiments show that one or more molecule types induced by HHV-6 reactivation are secreted to the outer fluid and can function to induce mitochondrial fragmentation, oxidative changes, and antiviral properties in distant cells. Not only that, but the serum of ME patients acts in exactly this manner (suggesting we have a molecular factor(s) in our blood similar, or the same as, that secreted by the HHV-6 reactivated cells–and which is causing harmful changes to our mitochondria).
A common thread to mitochondrial findings by both Davis and Prusty is the presence of a serum factor, or factors, which could be transferred to the cells of healthy people and inflict the ME cells’ phenotype on well cells. How far this commonality extends (for instance whether serum factor(s) found in Davis's impedance study is the same as the factor(s) found in Prusty's study of mitochondrial fragmentation) is currently unknown.
There are two main implications:
Some of the most precocious intra-cellular findings stem from the finding of an abnormal, cleaved, 37 kiloDalton RNase L and dramatic reduction in actin in patients’ cells by the late Robert Suhadolnik [9]. In “Chronic Fatigue Syndrome: a biological approach” [10], by Kenny De Meirleir and colleagues, these findings are expanded into a panoply of intra-cellular dysregulation including defective activation of RNase L by 2-5-A dimers produced by 2-5’A oligoadenylate synthetase, cleavage of Rnase L by m-calpain, and abnormalities in the cell state reminiscent of incompletely induced apoptosis (an essential cell disposal process culminating in cell death). Given the role of mitochondria in both cellular energy and apoptosis, it is hoped that the mitochondrial fragmentation research and antiviral induction research can explain the significance of these findings in a panoramic manner.
One indicator of scientific progress is the ability to place important observations in a single theoretical framework. The findings of induction of mitochondrial fragmentation and a cellular viral resistance state by patient serum could explain one such finding: the impairment of pyruvate dehydrogenase found by Fluge and Mella of Haukeland University, Norway. Prusty’s findings indicated that the mitochondrial fragmentation (caused by both patient serum and HHV-6 infected cell supernatant) potently impaired this very complex!
However starved our own mitochondria may be, this is a very exciting time for mitochondria research in ME and we must ensure these researchers are not starved of funding!
Other Studies Directly Implicate the Mitochondria
Julia Newton's group at Newcastle University found reduced mitochondria function [6] in both severely and moderately affected patients. Interestingly, they found "disease severity does not correlate with mitochondrial function and even those with a moderate form of the disease show evidence of mitochondrial dysfunction." This means the mitochondria function is more like a switch flipped for all patients than a gradient of effect or finding only in a subset. However, severely affected patients did have greater respiratory acidification due to impairments in glycolysis not seen in moderate ones. A straightforward interpretation would be impairment to mitochondrial function is a prerequisite for disease but that downstream effects of disease can impair vital cellular processes like glycolysis.
Another new study by Bhupesh Prusty of the University of Wurzburg, and UCSD’s Robert Naviaux has found that mitochondria from ME patients show dramatic fragmentation in comparison to controls [7][8].
In an experiment with culture cells with latent HHV-6 (containing Human Herpesvirus 6 DNA–but not actual virus particles) chemical reactivation of HHV-6 resulted in the production of several viral RNAs but not major viral proteins. Significantly, Prusty and Naviaux found HHV-6 reactivation induced mitochondrial fragmentation, oxidative changes, and decreased antiviral resistance. When fluid from the cell culture of the HHV-6 reactivated cells was transferred to a new group of cells (not exposed to HHV-6), mitochondrial fragmentation and oxidative changes also occurred in these cells but with increased antiviral resistance! [8]
The last experiment involved transferring not HHV-6 infected cell culture fluid but rather blood serum from ME patients to new cells. This serum transfer induced an identical state of mitochondrial fragmentation, oxidative change, and antiviral resistance! These experiments show that one or more molecule types induced by HHV-6 reactivation are secreted to the outer fluid and can function to induce mitochondrial fragmentation, oxidative changes, and antiviral properties in distant cells. Not only that, but the serum of ME patients acts in exactly this manner (suggesting we have a molecular factor(s) in our blood similar, or the same as, that secreted by the HHV-6 reactivated cells–and which is causing harmful changes to our mitochondria).
A common thread to mitochondrial findings by both Davis and Prusty is the presence of a serum factor, or factors, which could be transferred to the cells of healthy people and inflict the ME cells’ phenotype on well cells. How far this commonality extends (for instance whether serum factor(s) found in Davis's impedance study is the same as the factor(s) found in Prusty's study of mitochondrial fragmentation) is currently unknown.
There are two main implications:
- As a blood serum factor, or factors, is sufficient to induce a damaged, low-energy state this state may be reversible if this factor–or its causes–can be blocked or removed from the organism.
- As widespread mitochondrial fragmentation is sufficient to cause a body-wide low energy state, using the principle of only invoking needed changes (Parsimony Principle) it makes sense to assume this fragmentation, and cellular-energetic loss, is part of the core disease mechanism in ME.
Some of the most precocious intra-cellular findings stem from the finding of an abnormal, cleaved, 37 kiloDalton RNase L and dramatic reduction in actin in patients’ cells by the late Robert Suhadolnik [9]. In “Chronic Fatigue Syndrome: a biological approach” [10], by Kenny De Meirleir and colleagues, these findings are expanded into a panoply of intra-cellular dysregulation including defective activation of RNase L by 2-5-A dimers produced by 2-5’A oligoadenylate synthetase, cleavage of Rnase L by m-calpain, and abnormalities in the cell state reminiscent of incompletely induced apoptosis (an essential cell disposal process culminating in cell death). Given the role of mitochondria in both cellular energy and apoptosis, it is hoped that the mitochondrial fragmentation research and antiviral induction research can explain the significance of these findings in a panoramic manner.
One indicator of scientific progress is the ability to place important observations in a single theoretical framework. The findings of induction of mitochondrial fragmentation and a cellular viral resistance state by patient serum could explain one such finding: the impairment of pyruvate dehydrogenase found by Fluge and Mella of Haukeland University, Norway. Prusty’s findings indicated that the mitochondrial fragmentation (caused by both patient serum and HHV-6 infected cell supernatant) potently impaired this very complex!
However starved our own mitochondria may be, this is a very exciting time for mitochondria research in ME and we must ensure these researchers are not starved of funding!
REFERENCES:
1.) Bowles NE, Bayston TA, Zhang HY, Doyle D, Lane RJ, Cunningham L, Archard LC. Persistence of enterovirus RNA in muscle biopsy samples suggests that some cases of chronic fatigue syndrome result from a previous, inflammatory viral myopathy. J Med. 1993;24(2-3):145-60. PubMed PMID: 8409778.
2.) Vecchiet L, Montanari G, Pizzigallo E, Iezzi S, de Bigontina P, Dragani L, Vecchiet J, Giamberardino MA. Sensory characterization of somatic parietal tissues in humans with chronic fatigue syndrome. Neurosci Lett. 1996 Apr 19;208(2):117-20. PubMed PMID: 8859904.
3.) Chunfang Zhang, Alessandra Baumer, Ian R. Mackay, Anthony W. Linnane, Phillip Nagley, Unusual pattern of mitochondrial DNA deletions in skeletal muscle of an adult human with chronic fatigue syndrome, Human Molecular Genetics, Volume 4, Issue 4, April 1995, Pages 751–754
4.) Behan WM, More IA, Behan PO. Mitochondrial abnormalities in the postviral fatigue syndrome. Acta Neuropathol. 1991;83(1):61-5. PubMed PMID: 1792865.
5.) Esfandyarpour R, Kashi A, Nemat-Gorgani M, Wilhelmy J, Davis RW. A nanoelectronics-blood-based diagnostic biomarker for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Proc Natl Acad Sci U S A. 2019 May 21;116(21):10250-10257. doi: 10.1073/pnas.1901274116. Epub 2019 Apr 29. PubMed PMID: 31036648; PubMed Central PMCID: PMC6535016.
6.) Tomas C, Elson JL, Strassheim V, Newton JL, Walker M. The effect of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) severity on cellular bioenergetic function. PLoS One. 2020 Apr 10;15(4):e0231136. doi: 10.1371/journal.pone.0231136. eCollection 2020. PubMed PMID: 32275686; PubMed Central PMCID: PMC7147788.
7.) https://www.youtube.com/watch?v=yh53AnVNQqw
https://twitter.com/BhupeshPrusty/status/1233508017368436737/photo/1
8.) Schreiner P, Harrer T, Scheibenbogen C, Lamer S, Schlosser A, Naviaux RK and Prusty BK. Human Herpesvirus-6 Reactivation, Mitochondrial Fragmentation, and the Coordination of Antiviral and Metabolic Phenotypes in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. ImmunoHorizons April 1, 2020, 4 (4) 201-215; DOI
9.) Suhadolnik, RJ. Dysregulated 2-5 Synthetase/Rnase L/Pkr Pathways in Cfs. NIH Grantome. 1997.
10.) DeMeirleir, K. & Englebienne, P. Chronic fatigue syndrome: a biological approach. (CRC Press, 2002).
Media:
Image Source (used with permission): https://twitter.com/BhupeshPrusty/status/1233508017368436737/photo/1
1.) Bowles NE, Bayston TA, Zhang HY, Doyle D, Lane RJ, Cunningham L, Archard LC. Persistence of enterovirus RNA in muscle biopsy samples suggests that some cases of chronic fatigue syndrome result from a previous, inflammatory viral myopathy. J Med. 1993;24(2-3):145-60. PubMed PMID: 8409778.
2.) Vecchiet L, Montanari G, Pizzigallo E, Iezzi S, de Bigontina P, Dragani L, Vecchiet J, Giamberardino MA. Sensory characterization of somatic parietal tissues in humans with chronic fatigue syndrome. Neurosci Lett. 1996 Apr 19;208(2):117-20. PubMed PMID: 8859904.
3.) Chunfang Zhang, Alessandra Baumer, Ian R. Mackay, Anthony W. Linnane, Phillip Nagley, Unusual pattern of mitochondrial DNA deletions in skeletal muscle of an adult human with chronic fatigue syndrome, Human Molecular Genetics, Volume 4, Issue 4, April 1995, Pages 751–754
4.) Behan WM, More IA, Behan PO. Mitochondrial abnormalities in the postviral fatigue syndrome. Acta Neuropathol. 1991;83(1):61-5. PubMed PMID: 1792865.
5.) Esfandyarpour R, Kashi A, Nemat-Gorgani M, Wilhelmy J, Davis RW. A nanoelectronics-blood-based diagnostic biomarker for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Proc Natl Acad Sci U S A. 2019 May 21;116(21):10250-10257. doi: 10.1073/pnas.1901274116. Epub 2019 Apr 29. PubMed PMID: 31036648; PubMed Central PMCID: PMC6535016.
6.) Tomas C, Elson JL, Strassheim V, Newton JL, Walker M. The effect of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) severity on cellular bioenergetic function. PLoS One. 2020 Apr 10;15(4):e0231136. doi: 10.1371/journal.pone.0231136. eCollection 2020. PubMed PMID: 32275686; PubMed Central PMCID: PMC7147788.
7.) https://www.youtube.com/watch?v=yh53AnVNQqw
https://twitter.com/BhupeshPrusty/status/1233508017368436737/photo/1
8.) Schreiner P, Harrer T, Scheibenbogen C, Lamer S, Schlosser A, Naviaux RK and Prusty BK. Human Herpesvirus-6 Reactivation, Mitochondrial Fragmentation, and the Coordination of Antiviral and Metabolic Phenotypes in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. ImmunoHorizons April 1, 2020, 4 (4) 201-215; DOI
9.) Suhadolnik, RJ. Dysregulated 2-5 Synthetase/Rnase L/Pkr Pathways in Cfs. NIH Grantome. 1997.
10.) DeMeirleir, K. & Englebienne, P. Chronic fatigue syndrome: a biological approach. (CRC Press, 2002).
Media:
Image Source (used with permission): https://twitter.com/BhupeshPrusty/status/1233508017368436737/photo/1
Guest blog by: Joan McParland, Founder & Voluntary Coordinator
Hope 4 ME & Fibro Northern Ireland
Since a novel virus turned the entire world upside down, this needs to be said for others to understand the predicament #ME patients now find themselves in.
The world sees a shocking Covid-19 nightmare scenario, WE see a mirror image of #ME.
In the parallel world of the healthy...
BUT
This is NOT what happens when somebody gets #ME nor even when an estimated 17 million people around the globe, have #ME.
We are watching in both amazement and horror, as reports are now appearing of possible permanent post-viral damage in Covid-19 patients. Will they too be subjected to disbelief when they don’t recover quickly enough, or never recover. Will they be ’exercised’ into an even worse state, or sent to cognitive behavioral therapists because the viral load has disappeared and routine blood tests are ‘normal’?
Will the money tree run out and they’ll have to pay for biomedical research? Will they become invisible or airbrushed away, just like those discovered to have been overlooked in care homes during the current pandemic.
Will we be validated with all the new biomedical research into post-viral fatigue states, only time will tell and we are well accustomed to waiting, for decades.
THIS is why we have to scrutinize and question healthcare more closely than most, it’s a response to the decades of gas-lighting, neglect, abuse, indifference and the fact we’ve been left to rot, due to the influences of a very powerful U.K. psychiatric lobby.
This is WAY much bigger and probably way outside the understanding of anyone who hasn’t experienced the losses above.
See information HERE about the PACE trial and the role of the UK psychiatric lobby: https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/?fbclid=IwAR2Ut45sURbVhB0qHDjvrRGzSFXlhISW89F72UK50CXv7GiWopy0Mp_VcV0
The world sees a shocking Covid-19 nightmare scenario, WE see a mirror image of #ME.
In the parallel world of the healthy...
- This Covid-19 pandemic brought life as we knew it to an abrupt halt...
this is what happens when someone gets #ME - This Covid-19 pandemic took careers, social lives, family lives away...
this is what happens when someone gets #ME - This Covid-19 pandemic brought an end to travel and exotic holidays...
this is what happens when someone gets #ME - This Covid-19 pandemic brought self-isolation, and being trapped in homes...
this is what happens when someone gets #ME - This Covid-19 pandemic brought fear of the unknown, an invisible invader...
this is what happens when someone gets #ME - This Covid-19 pandemic does not have effective treatment, or a cure...
this is what happens when someone gets #ME - This Covid-19 pandemic brings a possibility of death and emerging signs of chronic illness...
this is what happens when someone gets #ME - This Covid-19 pandemic brought an inadequate NHS service to light...
this is what happens when someone gets #ME - This Covid-19 pandemic does not discriminate by age, race, financial status, political or sexual persuasion...
this is what happens when someone gets #ME - This Covid-19 pandemic brought sudden shock and horror and will result in post traumatic stress...
this is what happens when someone gets #ME - This Covid-19 pandemic revealed a hell nobody knew existed...
this is what happens when someone gets #ME - This Covid-19 pandemic brings financial ruin and the need to exist on social security benefits...
this is what happens when someone gets #ME - This Covid-19 pandemic will bring increased suicide rates due to mental and/or physical suffering...
this is what happens when someone gets #ME
BUT
This is NOT what happens when somebody gets #ME nor even when an estimated 17 million people around the globe, have #ME.
We are watching in both amazement and horror, as reports are now appearing of possible permanent post-viral damage in Covid-19 patients. Will they too be subjected to disbelief when they don’t recover quickly enough, or never recover. Will they be ’exercised’ into an even worse state, or sent to cognitive behavioral therapists because the viral load has disappeared and routine blood tests are ‘normal’?
Will the money tree run out and they’ll have to pay for biomedical research? Will they become invisible or airbrushed away, just like those discovered to have been overlooked in care homes during the current pandemic.
Will we be validated with all the new biomedical research into post-viral fatigue states, only time will tell and we are well accustomed to waiting, for decades.
THIS is why we have to scrutinize and question healthcare more closely than most, it’s a response to the decades of gas-lighting, neglect, abuse, indifference and the fact we’ve been left to rot, due to the influences of a very powerful U.K. psychiatric lobby.
This is WAY much bigger and probably way outside the understanding of anyone who hasn’t experienced the losses above.
See information HERE about the PACE trial and the role of the UK psychiatric lobby: https://www.statnews.com/2016/09/21/chronic-fatigue-syndrome-pace-trial/?fbclid=IwAR2Ut45sURbVhB0qHDjvrRGzSFXlhISW89F72UK50CXv7GiWopy0Mp_VcV0
#MyalgicE #MyalgicEncephalomyelitis #PwME #MEICC #MEIntl #SevereME #PwME4ICC
(Note: NEW! information is put at the top of this blog, and will later be moved to its subject matter location.)
UPDATED 01/14/22 - People with Myalgic Encephalomyelitis (#pwME) are experienced at dealing with a dysfunctional immune system, which includes social distancing and avoiding viral infections. We could teach the world a thing or two about how it's done ... if only they'd listen. We will try to update this blog as additional information comes to light.
Much of this information is outdated, but it being left within the blog to show changes over time (and how little we know of the situation).
Much of this information is outdated, but it being left within the blog to show changes over time (and how little we know of the situation).
Covid-19 Stats:
Worldwide and by Country by Worldometer (updated daily)
HERE is a link to a document, last updated 15 July 2020, from the London Business School on the "economics of a pandemic". Chapters of interest include science, health policies, economics, and macroeconomic policies.
06/16/20 - An interactive map and daily updates can be found HERE from CovidActNow. Signup for their email at covidactnow.org/alert_signup.
COVID Act Now is a multidisciplinary team of technologists, epidemiologists, health experts, and public policy leaders working to provide disease intelligence and data analysis on COVID in the U.S. Partnering with Georgetown University and Stanford Medicine; click HERE to enter your state to see its current progress.
Worldwide and by Country by Worldometer (updated daily)
HERE is a link to a document, last updated 15 July 2020, from the London Business School on the "economics of a pandemic". Chapters of interest include science, health policies, economics, and macroeconomic policies.
06/16/20 - An interactive map and daily updates can be found HERE from CovidActNow. Signup for their email at covidactnow.org/alert_signup.
COVID Act Now is a multidisciplinary team of technologists, epidemiologists, health experts, and public policy leaders working to provide disease intelligence and data analysis on COVID in the U.S. Partnering with Georgetown University and Stanford Medicine; click HERE to enter your state to see its current progress.
NEW INFORMATION:
01/14/22 - This LINK to the Infectious Disease Society of America's IDSA Guidelines on the Treatment and Management of Patients with COVID-19 (updated 04 Jan 2022) addresses recommended medications and testing, This is information your doctor should know if you contract COVID.
Also, this article Advice for Long-Haulers, from the Life-Longers by Megan Doherty (04 Dec 2020) notes how the ME community has "dealt with long-haul-like symptoms for years" .
Quercetin is a proven antiviral compound, which could be taken at the first sign of catching COVID-19. This 2020 article "A Role for Quercetin in Coronavirus Disease 20119 (COVID-19)" addresses that.
01/14/22 - This LINK to the Infectious Disease Society of America's IDSA Guidelines on the Treatment and Management of Patients with COVID-19 (updated 04 Jan 2022) addresses recommended medications and testing, This is information your doctor should know if you contract COVID.
Also, this article Advice for Long-Haulers, from the Life-Longers by Megan Doherty (04 Dec 2020) notes how the ME community has "dealt with long-haul-like symptoms for years" .
Quercetin is a proven antiviral compound, which could be taken at the first sign of catching COVID-19. This 2020 article "A Role for Quercetin in Coronavirus Disease 20119 (COVID-19)" addresses that.
Click below to go to the chosen topic directly:
Signs & Symptoms
Contamination
Getting Tested
Sanitizing
What You Can Do
Practical Links
Caregivers
Public Support / Mutual Aid Groups
Studies / Research
Other Information
Signs & Symptoms
Contamination
Getting Tested
Sanitizing
What You Can Do
Practical Links
Caregivers
Public Support / Mutual Aid Groups
Studies / Research
Other Information
DIVERSIONS, HUMOR, AND ME WRITINGS
Before we start, HERE is a pdf with Diversions, Humor, and ME Writings. The link/document for Things-To-Do has been moved into this pdf. If you have additional suggestions, please send them to David.Steckel@ME-International.org.
06/02 - Here's a link for Museums that offer virtual tours. Hours of intellectual browsing!
Before we start, HERE is a pdf with Diversions, Humor, and ME Writings. The link/document for Things-To-Do has been moved into this pdf. If you have additional suggestions, please send them to David.Steckel@ME-International.org.
06/02 - Here's a link for Museums that offer virtual tours. Hours of intellectual browsing!
SIGNS & SYMPTOMS
We have learned a lot since our original post on 20 Feb 2020. In addition to the usual symptoms, new unusual symptoms are showing up. See this AAPP article titled "Unusual Symptoms of COVID-19 You Need to Know About". These are listed above the typical signs and symptoms for Coronavirus include (from the Report of the WHO-China Joint Mission on Coronavirus Disease 2019 (COVID-19) 20 Feb 2020):
11/28 - New/updated info is shown, with a good graphic of "Where COVID Goes" can be found HERE.
07/09 -NBC News reports WHO acknowledges 'emerging evidence' of airborne spread of COVID-19. The agency said it will release a scientific brief on all modes of transmission in the coming days. With additional information HERE. There's a growing consensus that tiny viral particles can spread through singing, speaking loudly, or breathing heavily, in addition to respiratory droplets, usually from sneezes or coughs.
We have learned a lot since our original post on 20 Feb 2020. In addition to the usual symptoms, new unusual symptoms are showing up. See this AAPP article titled "Unusual Symptoms of COVID-19 You Need to Know About". These are listed above the typical signs and symptoms for Coronavirus include (from the Report of the WHO-China Joint Mission on Coronavirus Disease 2019 (COVID-19) 20 Feb 2020):
- COVID Toes - red or purple lesions/rashes on patients' hands and feet
- loss of taste or smell
- mild to severe hallucinations
- possible hearing loss
- fever, dry cough, fatigue, sputum production
- shortness of breath, sore throat, headache, dizzines, confusion
- Digestive symptoms - loss of appetite, diarrhea, nausea or vomiting, abdominal pain
- myalgia or arthralgia, chills
- nasal congestion, hemoptysis, conjunctival congestion
11/28 - New/updated info is shown, with a good graphic of "Where COVID Goes" can be found HERE.
07/09 -NBC News reports WHO acknowledges 'emerging evidence' of airborne spread of COVID-19. The agency said it will release a scientific brief on all modes of transmission in the coming days. With additional information HERE. There's a growing consensus that tiny viral particles can spread through singing, speaking loudly, or breathing heavily, in addition to respiratory droplets, usually from sneezes or coughs.
CONTAMINATION
Virus can live on objects for various periods of time. How to clean these surfaces can be found in THIS BBC ARTICLE (3/17/20). An article from the Journal of Hospital Infection titled "Persistence of coronaviruses on inanimate surfaces and their inactivation with biocidal agents" has a pretty comprehensive table of different surfaces and times. (March 2020)
Virus can live on objects for various periods of time. How to clean these surfaces can be found in THIS BBC ARTICLE (3/17/20). An article from the Journal of Hospital Infection titled "Persistence of coronaviruses on inanimate surfaces and their inactivation with biocidal agents" has a pretty comprehensive table of different surfaces and times. (March 2020)
- AIR: up to 3 hours
- COPPER: up to 4 hours
- CARDBOARD: up to 24 hours (setting aside mail for a day makes sense)
- PLASTIC/STAINLESS STEEL: up to 2-3 days
GETTING TESTED
The current parameters for getting a COVID-19 test often include fever. As ME includes a dysfunctional immune system, many pwME have a lower than normal base temperature and may not exhibit a fever when ill. Doctors may be more willing to recognize a fever if there is a baseline record of lower than average temperature. The following information may be helpful to share with medical professionals if testing is denied due to lack of fever.
Patients may want to have a copy of the following on hand:
1. The IC Primer can help doctors understand the unique biological abnormalities of ME.
2. Dr. Weir and Dr. Speight of the 25% M.E. Group put out a notification (download) regarding severe ME patients and Coronavirus. "PWME should be aware of the fact that they sometimes do not develop a fever when they acquire a virus infection."
3. Emergency Room Info for People with ME - This document contains information compiled from patient input and expert documents to assist patients and caregivers in communicating with medical professionals.
More info on lack of fever:
The current parameters for getting a COVID-19 test often include fever. As ME includes a dysfunctional immune system, many pwME have a lower than normal base temperature and may not exhibit a fever when ill. Doctors may be more willing to recognize a fever if there is a baseline record of lower than average temperature. The following information may be helpful to share with medical professionals if testing is denied due to lack of fever.
Patients may want to have a copy of the following on hand:
1. The IC Primer can help doctors understand the unique biological abnormalities of ME.
- Loss of thermostatic stability: e.g. subnormal body temperature, marked diurnal fluctuations; sweating episodes, recurrent feelings of feverishness with or without low grade fever, cold extremities. pg #8
- The initial infection may cause profound dysregulation of the immune system, which in turn may result in persistent infection or abnormal immune response. pg #5
2. Dr. Weir and Dr. Speight of the 25% M.E. Group put out a notification (download) regarding severe ME patients and Coronavirus. "PWME should be aware of the fact that they sometimes do not develop a fever when they acquire a virus infection."
3. Emergency Room Info for People with ME - This document contains information compiled from patient input and expert documents to assist patients and caregivers in communicating with medical professionals.
More info on lack of fever:
- Immune Deficiency Foundation COVID-19 Update - "..many individuals with a primary immunodeficiency (PI) report that they don’t run a fever even when they have contracted a serious viral infection."
- Cohen Children's Northwell Health Body Temperature in Patients with Primary Immunodeficiency (pdf download) - "67.7% reported absence of fever with infection"
SANITIZING
Use bleach or 70%+ alcohol to kill virus on surfaces. A recipe for a 1:10 bleach spray solution is provided by VeryWellHealth.com as: "1 part bleach for every 9 parts water. A good amount to start with is 1/4 cup bleach and 2¼ cups of water. Carefully pour the bleach into the spray bottle or jar first, then add the water. Mixing the solution in this order will prevent the bleach from splashing up on you." (1/5/20) NOTE: It may be safer to add bleach to the water, even though bleach is basic and not acidic. (Thank you M.R.)
NOTE: A bleach solution can lose its potency over a couple of days. HERE's an informative blog from Clorox discussing this. (7/4/20)
Recipes for hand sanitizers can be found on the web. Ingredients may include isopropol or rubbing alcohol (or very high proof drinking alcohol like Everclear), aloe vera gel or xanthan gum for thickening, and essential oils or lemon juice for fragrance. Be sure to follow the recipe closely, as too little [alcohol] can make it ineffective and too much can dry out your hands. Best advice is to WASH YOUR HANDS and AVOID TOUCHING YOUR FACE.
These Common Household Products Can Destroy the Novel Virus by Consumer Reports shows you how to use them and which products to stay away from. (03/17/20)
Use bleach or 70%+ alcohol to kill virus on surfaces. A recipe for a 1:10 bleach spray solution is provided by VeryWellHealth.com as: "1 part bleach for every 9 parts water. A good amount to start with is 1/4 cup bleach and 2¼ cups of water. Carefully pour the bleach into the spray bottle or jar first, then add the water. Mixing the solution in this order will prevent the bleach from splashing up on you." (1/5/20) NOTE: It may be safer to add bleach to the water, even though bleach is basic and not acidic. (Thank you M.R.)
NOTE: A bleach solution can lose its potency over a couple of days. HERE's an informative blog from Clorox discussing this. (7/4/20)
Recipes for hand sanitizers can be found on the web. Ingredients may include isopropol or rubbing alcohol (or very high proof drinking alcohol like Everclear), aloe vera gel or xanthan gum for thickening, and essential oils or lemon juice for fragrance. Be sure to follow the recipe closely, as too little [alcohol] can make it ineffective and too much can dry out your hands. Best advice is to WASH YOUR HANDS and AVOID TOUCHING YOUR FACE.
These Common Household Products Can Destroy the Novel Virus by Consumer Reports shows you how to use them and which products to stay away from. (03/17/20)
WHAT YOU CAN DO
For personalized management and treatment information for ME, see the ME IC Primer starting on pg#13.
02/18/21 - from CovidActNow - Hydrating the Respiratory Tract: An Alternative Explanation Why Masks Lower Severity of COVID-19 by Courtney - 02 Feb 2021 - "A study demonstrates how using masks, including cloth masks, increases the humidity of the air that a person inhales. Mask wearing promotes hydration of the respiratory tract, which increases the respiratory track’s general immune defense against infections and prevents viruses from reaching the lower respiratory tract. The researchers suggest that this change might be one of the ways that even wearing cloth masks decreases our chances of getting COVID."
8/19 -Dr. Monica Gandhi on Why Wearing a Mask is Crucial for Containing COVID - "Dr. Monica Gandhi (MD, MPH University of California San Francisco) breaks down how mask usage has contributed to both reducing the infection rate and severity of COVID through a series of examples, and discusses what you can do to help mitigate the impact of the pandemic in your community." ~ COVID Act Now
12/23/20 - HERE are some mask tips from AARP for: how to fit and wear your mask, what materials are best, and mistakes to avoid.
12/27/20 - Dr. Hillman of Huntersville, NC answers "Should I take the COVID-19 vaccine when it becomes available?" (pertaining to CFS and FM patients).
6/17 - Medical News Today's article Best available evidence supports physical distancing and wearing face masks "Until randomized controlled trials are conducted and can offer a greater degree of certainty, this study, which appears in The Lancet, provides doctors and policymakers with interim information on which to base key decisions." (6/4/20)
What I Learned From Nursing My Husband Through COVID-19 by Martha Campbell - This article discusses what was done at home to help minimize COVID-19 effects at home, as practiced by a couple who are medical professionals. (4/19/20)
Consider using acetaminophen (TYLENOL®) / paracetamol (EU) instead of ibuprofen. Read THIS from MastCellDisease.com. "Ian Jones, a professor of virology at the University of Reading, said that ibuprofen’s anti-inflammatory properties could “dampen down” the immune system, which could slow the recovery process."
HERE's a breathing exercise to enhance ventilation of the lungs in case of sickness or to prepare beforehand. Short summary:
5× breathe in deeply, hold, breathe out, then 1 strong cough
Repeat this cycle 2× , then breathe for 10 minutes laying on stomach/pillow to free up most of the lungs.
Review this 25% M.E. Group's notification (as a download from https://25megroup.org/download/1796/?v=3236) for guidance
Dr. Nancy Klimas talks about Coronavirus & ME/CFS (14:02 - 03/13/20)
Dr. Sarah Myhill advises on Treating Viral Infections (5:21 - 03/12/20)
See dosage info HERE and HERE.
For personalized management and treatment information for ME, see the ME IC Primer starting on pg#13.
02/18/21 - from CovidActNow - Hydrating the Respiratory Tract: An Alternative Explanation Why Masks Lower Severity of COVID-19 by Courtney - 02 Feb 2021 - "A study demonstrates how using masks, including cloth masks, increases the humidity of the air that a person inhales. Mask wearing promotes hydration of the respiratory tract, which increases the respiratory track’s general immune defense against infections and prevents viruses from reaching the lower respiratory tract. The researchers suggest that this change might be one of the ways that even wearing cloth masks decreases our chances of getting COVID."
8/19 -Dr. Monica Gandhi on Why Wearing a Mask is Crucial for Containing COVID - "Dr. Monica Gandhi (MD, MPH University of California San Francisco) breaks down how mask usage has contributed to both reducing the infection rate and severity of COVID through a series of examples, and discusses what you can do to help mitigate the impact of the pandemic in your community." ~ COVID Act Now
12/23/20 - HERE are some mask tips from AARP for: how to fit and wear your mask, what materials are best, and mistakes to avoid.
12/27/20 - Dr. Hillman of Huntersville, NC answers "Should I take the COVID-19 vaccine when it becomes available?" (pertaining to CFS and FM patients).
6/17 - Medical News Today's article Best available evidence supports physical distancing and wearing face masks "Until randomized controlled trials are conducted and can offer a greater degree of certainty, this study, which appears in The Lancet, provides doctors and policymakers with interim information on which to base key decisions." (6/4/20)
What I Learned From Nursing My Husband Through COVID-19 by Martha Campbell - This article discusses what was done at home to help minimize COVID-19 effects at home, as practiced by a couple who are medical professionals. (4/19/20)
Consider using acetaminophen (TYLENOL®) / paracetamol (EU) instead of ibuprofen. Read THIS from MastCellDisease.com. "Ian Jones, a professor of virology at the University of Reading, said that ibuprofen’s anti-inflammatory properties could “dampen down” the immune system, which could slow the recovery process."
HERE's a breathing exercise to enhance ventilation of the lungs in case of sickness or to prepare beforehand. Short summary:
5× breathe in deeply, hold, breathe out, then 1 strong cough
Repeat this cycle 2× , then breathe for 10 minutes laying on stomach/pillow to free up most of the lungs.
Review this 25% M.E. Group's notification (as a download from https://25megroup.org/download/1796/?v=3236) for guidance
- Vitamin C
- Vitamin D
- Zinc
Dr. Nancy Klimas talks about Coronavirus & ME/CFS (14:02 - 03/13/20)
- 0:33 Risks of exposure
-
1:28 What you should do
- Wash hands, disinfect, social distancing etc.
- 2:30 Virus lifecycle
-
3:38 Products that may help prevent
- Xylitol based nasal spray (may be easier to find in the allergy aisle)
- Cellulose spray (Canada & Europe)
- 4:50 Asthmatics
-
6:45 Supplements (dosage and warnings in video)
- Vitamin C
- NAC (N Acetyl Cysteine)
- Co Q10 in the ubiquinol form
- Liposomal glutathione
- Carnitine
- Methyl B12
- Methyl Folate
-
9:34 Antivirals (dosage and warnings in video)
- Isoprinosine (U.S.)
- Immunovir (Canada & Europe)
- 11:55 Don't Panic
Dr. Sarah Myhill advises on Treating Viral Infections (5:21 - 03/12/20)
- Iodine with salt pipe
- Vitamin C
See dosage info HERE and HERE.
PRACTICAL LINKS:
- HowToGetOn - Newest News In the Time of Coronavirus Many useful links on many different subjects. [There's a link to the previously posted 50 State Guide to Unemployment & Paid Leave During Coronavirus within this site.]
- HowToGetOn - For those on Facebook there is a new page that will be posting information. Love & Discounts in the Time of Coronavirus - "A guide to food, money, and kindness during Coronavirus 2020."
CAREGIVERS:
Care Alliance Ireland - Creating a Backup Plan: Covid-19 and Family Carers
12/15/20 - HERE's a FACT SHEET FOR RECIPIENTS AND CAREGIVERS from Pfizer regarding their BIONTECH Covid-19 vaccine. Please make note of the warnings included for those with allergies & immune system issues, and that what you should tell your vaccination provider.
06/13/20 - From AARP ...What to Do If You Have Coronavirus and No Caregiver to Help Experts provide tips on where to turn in a caregiving emergency (with a link for Spanish translation).
Care Alliance Ireland - Creating a Backup Plan: Covid-19 and Family Carers
12/15/20 - HERE's a FACT SHEET FOR RECIPIENTS AND CAREGIVERS from Pfizer regarding their BIONTECH Covid-19 vaccine. Please make note of the warnings included for those with allergies & immune system issues, and that what you should tell your vaccination provider.
06/13/20 - From AARP ...What to Do If You Have Coronavirus and No Caregiver to Help Experts provide tips on where to turn in a caregiving emergency (with a link for Spanish translation).
PUBLIC SUPPORT / MUTUAL AID GROUPS:
AARP - Find a Mutual Aid Group - "We have aggregated these mutual aid groups as a public resource. Because these groups are formed in local communities, we cannot verify or vouch for any group or individual offerings. Please exercise all necessary judgment when interacting with community members not previously known to you."
Collective Care Is Our Best Best Weapon Against COVID-19 - This is a "...growing list of mutual aid pandemic disaster care, in alphabetical order ..." compiled by Cindy Milstein for the US, Canada, Britain and Germany that is said to be updated daily as additional info is collected.
UK - FreedomNews.org - A long list of mutual aid groups throughout the country. "We have done our best to include all already existing mutual aid groups below. If your group is not listed, or you set one up after this text’s publication, please get in touch and we will fix it. You can reach us either via our Facebook page, or send an email to editor@freedompress.org.uk.
U.S. - Seattle, WA - Office of the Mayor
U.S. - Nextdoor - Nextdoor is an app to connect neighbors. "Every neighbor must verify their address in the neighborhood. Every neighbor must use their real name. Nextdoor is securely encrypted using the HTTPS Internet protocol."
The North Carolina Dept. of HHS has established a website and a COVID-19 hotline. Check to see if your state has done the same. Your county may also be providing this service. The National Governors Association has "Current Information On The Status Of COVID-19 In The United States And Abroad, What Actions States/Territories Have Taken To Address It, And The Latest Efforts By The Federal Government" HERE.
AARP - Find a Mutual Aid Group - "We have aggregated these mutual aid groups as a public resource. Because these groups are formed in local communities, we cannot verify or vouch for any group or individual offerings. Please exercise all necessary judgment when interacting with community members not previously known to you."
Collective Care Is Our Best Best Weapon Against COVID-19 - This is a "...growing list of mutual aid pandemic disaster care, in alphabetical order ..." compiled by Cindy Milstein for the US, Canada, Britain and Germany that is said to be updated daily as additional info is collected.
UK - FreedomNews.org - A long list of mutual aid groups throughout the country. "We have done our best to include all already existing mutual aid groups below. If your group is not listed, or you set one up after this text’s publication, please get in touch and we will fix it. You can reach us either via our Facebook page, or send an email to editor@freedompress.org.uk.
U.S. - Seattle, WA - Office of the Mayor
U.S. - Nextdoor - Nextdoor is an app to connect neighbors. "Every neighbor must verify their address in the neighborhood. Every neighbor must use their real name. Nextdoor is securely encrypted using the HTTPS Internet protocol."
The North Carolina Dept. of HHS has established a website and a COVID-19 hotline. Check to see if your state has done the same. Your county may also be providing this service. The National Governors Association has "Current Information On The Status Of COVID-19 In The United States And Abroad, What Actions States/Territories Have Taken To Address It, And The Latest Efforts By The Federal Government" HERE.
STUDIES / RESEARCH:
- 12/20/20 - ME patients are known to have Blood-Brain Barrier issues. Results from this recent study: “… show that intravenously injected radioiodinated S1 (I-S1) readily crossed the blood–brain barrier in male mice, was taken up by brain regions and entered the parenchymal brain space. I-S1 was also taken up by the lung, spleen, kidney and liver. Intranasally administered I-S1 also entered the brain, although at levels roughly ten times lower than after intravenous administration.” So WEAR YOUR MASK!!
- 12/15/20 - Re: Long covid: doctors must assess and investigate patients properly by Nina Muirhead (09 December 2020) - A response to the original article by Lokugamage, Bowen and Blair, regarding the link between post-COVID patients and those having ME. "Long COVID and ME/CFS are complex and heterogeneous. Both need greater recognition and research. The worst outcome would be to ignore or dismiss both. There is a pressing need for better education so that we can take the right approach and avoid causing patients harm."
- 11/28/20 - Attack on Red Blood Cells a Prime Suspect in COVID’s Debilitating Effects
by Chris Casey (17 November 2020) - The lingering oxygen-level difficulties are explained by the lifespan of red blood cells. The cells circulate for up to 120 days before the body replaces them. To make room for hemoglobin, red blood cells have evolved to lose nuclei and organelles that allow other cells to replace damaged molecular components. So if the virus damages red blood cells, it will be up to four months before they are cleared and replaced with cells that do not carry such damage. - 10/10/20 - Coronavirus and the brain: Diagnosing and treating COVID-19's neurological effects by John F. Connolly (23 July 20) - "COVID-19’s “neuro-invasive” features are leading to calls to prepare for the consequences of the daunting relationship between COVID-19 and neurologic pathologies. As more patients recover, we need to continue to monitor them as they return to their everyday lives. Are they functioning as they did before they caught the virus? Or are they experiencing difficulties returning to work, with complications concentrating or maintaining focus?"
- 8/29/20 - Effect of Calcifediol Treatment and best Available Therapy versus best Available Therapy on Intensive Care Unit Admission and Mortality Among Patients Hospitalized for COVID-19: A Pilot Randomized Clinical study by Castillo, Costa, Barrios, Díaz, Miranda, Bouillon and Gomez (Spain, Belgium) - "The vitamin D endocrine system may have a variety of actions on cells and tissues involved in COVID-19 progression."
- 09/01/20 - A Supercomputer Analyzed Covid-19 - and an Interesting New Theory Has Emerged by Thomas Smith. "The [bradykinin] hypothesis provides a model that explains many aspects of Covid-19, including some of its most bizarre symptoms. It also suggests 10-plus potential treatments, many of which are already FDA approved." There are also Bradykinin connections related to ME (the regulation of blood pressure and a breakdown of the blood-brain barrier). ~ MEI
OTHER INFORMATION:
During this time, your PC may also be under attack - more than normal. We will be adding to a link-list in THIS DOCUMENT to give you ways in which to help protect your IT world. These lessons are good to learn even after the current onslaught of hackers, etc. is diminished.
- 02/17/21 - from CovidActNow - Internet search patterns reveal clinical course of COVID-19 disease progression and pandemic spread across 32 countries by Lu & Reis (USA) - 11 Feb 2021 - "A study analyzed internet search trends related to COVID across 32 countries, finding that increases in COVID symptom-related searches preceded increases in reported COVID cases and deaths by an average of 18.5 and 22 days, respectively. Using the pattern of search terms, the timing of the appearance of COVID symptom was determined to be fever, dry cough, sore throat, and chills, first, followed by shortness of breath about five days afterwards. This result correlates with the clinical course of COVID as described in the medical literature. The study shows that internet searches can be used for real-time tracking of COVID and other infectious diseases at a population scale."
- 5/17/20 - Coronavirus (COVID-19) and Gulf War Illness (15:24) is an audio link by Dr. Nancy Klimas. Since GWI is a Complex Immunological and Neurological Disease (CIND), the information given is pertinent to ME also. She highlights the importance of taking antioxidants (CoQ10 ubiquinol at 100mg (or ubiquinone at 300mg), NAC at 600mg 2x/day, Vitamin C at 500mg 2-3x/day, and Isoprinosine (dosage on bottle) 5 days/week), AND notes that if you cannot hold your breath for 10 seconds, it's time to go to the ER.
- What Antibody Studies Can Tell You — and More Importantly, What They Can’t by Caroline Chen (ProPublica) "... here’s a primer on what they do, how they should be properly wielded and how you, a critical reader (or journalist), can interpret a study that’s hot off the presses." (4/28/20)
- Why smart people believe coronavirus myths by the BBC. "...we are seeing a fresh inundation of fake news – this time around the coronavirus pandemic. From Facebook to WhatsApp, frequently shared misinformation include everything from what caused the outbreak to how you can prevent becoming ill." (4/6/20)
- Answers to your DIY face mask questions, including what material you should use by the Washington Post (4/9/20), AND a (download) link to the CDC instructions for making and using face masks. Even the ARMY has done testing and has recommendations for how to make an effective face mask.
5/25 - In addition to our previous information on DIY Face Masks from the Washington Post, CDC and ARMY, HERE is a good site on how to make masks from cloth, a T-shirt, a bandana, and denim from Happy DIY Home. It contains many helpful illustrations, making this endeavor very plausible. - N95 vs FFP3 & FFP2 Masks - What's the Difference? by Fast Life Hacks. A good tutorial on masks and respirators. (4/6/20)
- Dealing with OCD and Coronavirus by Spoonie Living (3/31/20)
- Health Impact News - A Scientific Look at Botanical Plants and Supplements Against Coronavirus (3/15/20)
- iHerb The Blog - Coronavirus, Precautions, and Strengthening the Immune System (1/29/20)
- Healthline - 15 Impressive Herbs with Antiviral Activity (10/21/19)
- UK.gov - Face-to-face health assessments for benefits suspended amid coronavirus outbreak (3/16/20)
- Coronavirus Disease 2019: Resources from the American Academy of Otolaryngology - Head and Neck Surgery. This covers topics like financial relief assistance, latest news from federal agencies, and more.
- Here's A Seattle Intensivist's One-Pager on COVID-19 pdf from Nick Mark, MD. Of course we all know what an intensivist is (a board-certified physician who provides special care for critically ill patients - I had to look it up). This one-pager is very technical, but still has good layman information within.
- That Discomfort You're Feeling is Grief - Harvard Business Review (3/23/20)
David Kessler, the world’s foremost expert on grief, shares his thoughts on why it’s important to acknowledge the grief you may be feeling, how to manage it, and how he believes we will find meaning in it. - Bateman Horne Center - Useful medical information when treating COVID-19 in patients with underlying myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and severe fibromyalgia (FM) - While this information is focused on those who have ME/CFS and Fibromyalgia, some information also applies to ME. For general #MyalgicE treatment guidelines see the ME IC Primer starting on page 13.
During this time, your PC may also be under attack - more than normal. We will be adding to a link-list in THIS DOCUMENT to give you ways in which to help protect your IT world. These lessons are good to learn even after the current onslaught of hackers, etc. is diminished.
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