ME INTERNATIONAL
  • Home
    • Current Newsletter
    • Members in the News
    • Archived Newsletters
    • Advocacy
    • Board of Directors >
      • Annual Report 2021
      • Annual Report 2020
  • Criteria
    • Understanding Criteria
    • Severe ME
    • FAQs about ME
    • The History of ME
  • Medical/Research
    • Primer/Info Sheets
    • Patient Resources >
      • Communicate w/Doctor
      • ER Info for pwME
      • Assistance
      • Do I Have ME?
      • Pain
      • PENE
      • Sleep Problems
      • Disability
      • Coping with Symptoms while waiting for a Cure
      • Medical Specialties
    • Exercise Dangers
    • Published ME-ICC Studies >
      • Published ME-CCC Studies
    • Possible Biomarkers
    • Videos / Music
  • Orgs
    • Crisis Information
    • International ME-ICC Orgs
    • Australian ME-ICC Orgs
    • Canadian ME-ICC Orgs
    • E.U. ME-ICC Orgs
    • German ME-ICC Orgs
    • Irish ME-ICC Orgs
    • Japanese ME-ICC Orgs
    • New Zealand ME-ICC Orgs
    • Norwegian ME-ICC Orgs
    • Portuguese ME-ICC Orgs
    • South African ME-ICC Orgs
    • Spanish ME-ICC Orgs
    • Swiss ME-ICC Orgs
    • UK ME-ICC Orgs
    • US ME-ICC Orgs
  • Connect
    • Membership Application
    • FB Groups
    • Committees
    • Contact
  • Blog List
    • Outside Blogs on ME
  • Donate
    • Pulse Oximeter Fundraiser

ME International Blogs

Please share to your favorite Social Media Page!

The Illness That It's OK To Mock

12/12/2021

1 Comment

 
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

Picture of Paul Mc Daid
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

Clarity for ALL

9/28/2021

16 Comments

 
Image of magnifying glass showing G93.3


Proposed US diagnosis code change would lump ME, ME/CFS, CFS & SEID under new G93.32 code.

UPDATE: 10 June 2022
The 01 October 2022 edition of the ICD-10-CM  will mark a change to the US ICD code system for ME, ME/CFS, and CFS as follows:
  • G93.3, used for Myalgic Encephalomyelitis, will become G93.32
  • R53.82, used for Chronic Fatigue Syndrome, will also become G93.32
  • ME/CFS, which previously did not have a code, will also be G93.32
  • G93.3 (previously ME) will be labeled "Post Viral and related fatigue syndromes"
Doctors need to be educated on how to diagnose ME using the ME ICPrimer and be directed to use the updated code of G93.32 starting on October 1st, 2022.

NOTE:  ME International submitted comments with concerns about this change.  Please read our blog below for details. 


UPDATE: 25 Jan 2022
While there was little expectation a decision would be made for the ICD-10-CM INDEX to DISEASES and INJURIES 2022 Addenda April Update, this notification indicates no change to the G93.3 or R53.82 coding will occur in the April update.  We will continue to watch for notifications regarding any changes to myalgic encephalomyelitis ICD-10-CM code.
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:
  • Removal of Benign from Benign Myalgic Encephalomyelitis
ME INTERNATIONAL REJECTS THE FOLLOWING:
  • Change of G93.3 label
  • Moving Myalgic Encephalomyelitis to G93.32
  • Moving Chronic Fatigue Syndrome to G93.32
  • Adding ME/CFS and myalgic encephalomyelitis/chronic fatigue syndrome to G93.32
  • Adding SEID to Index terms
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:
Image of proposed coding for G diseases of the nervous system.
Image of proposed coding for R Symptoms, signs chapter.
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

Image of current coding for diseases of the nervous system.
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.
Image stating
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
Image showing modifications to the coding of ME.
with Systemic exertion intolerance disease [SEID] added to the Index and also coded to the proposed new G93.32 sub-code.
16 Comments

ME-I Chat Rooms

3/29/2021

2 Comments

 
Image of the ME International logo with

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

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”.

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.

2 Comments

MEI Pulse Oximeter Project

1/10/2021

1 Comment

 
Image of pulse oximeters to be shipped.

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:
  • 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.
See the U.S. FDA write-up HERE.

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.
1 Comment

#MyalgicE Videos - Understanding Diagnosis

5/6/2020

0 Comments

 
Images of the ME International logo.
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:
  • 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

0 Comments

Coronavirus (CoVid-19) and #MyalgicE

3/14/2020

0 Comments

 
Image of the COVID-19 virus.

(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).

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.
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.
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
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!
 
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):
  • COVID Toes - red or purple lesions/rashes on patients' hands and feet
  • loss of taste or smell
  • mild to severe hallucinations
  • possible hearing loss
Typical Symptoms:
  • 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)

  • 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  
Source: NEJM Original Article - Aerosol and surface stability of HCoV-19 (SARS-CoV-6 2) compared to SARS-CoV-1 (pg#3)
 
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.
  • 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)
 
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
  • 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
NOTE: High doses (>2,000 mg daily) of vit C can cause digestive and other issues. 
            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).
 
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. 
​
 
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:
  • 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.
0 Comments

    Archives

    March 2022
    December 2021
    September 2021
    August 2021
    July 2021
    May 2021
    April 2021
    March 2021
    February 2021
    January 2021
    August 2020
    May 2020
    April 2020
    March 2020

    Categories

    All
    General
    Guest
    Science

    RSS Feed

    Back to Blog List
Google Translate
Crisis Information
DONATE
ME International logo
​The information provided at this site is not intended to diagnose or treat any illness and is not to be considered as medical advice.
ME International is a 501(c)(3) nonprofit and is listed as a nonprofit corporation with the state of Colorado.

Copyright 2019-2022 ME International. All rights reserved.
EIN 84-3568066

  • Home
    • Current Newsletter
    • Members in the News
    • Archived Newsletters
    • Advocacy
    • Board of Directors >
      • Annual Report 2021
      • Annual Report 2020
  • Criteria
    • Understanding Criteria
    • Severe ME
    • FAQs about ME
    • The History of ME
  • Medical/Research
    • Primer/Info Sheets
    • Patient Resources >
      • Communicate w/Doctor
      • ER Info for pwME
      • Assistance
      • Do I Have ME?
      • Pain
      • PENE
      • Sleep Problems
      • Disability
      • Coping with Symptoms while waiting for a Cure
      • Medical Specialties
    • Exercise Dangers
    • Published ME-ICC Studies >
      • Published ME-CCC Studies
    • Possible Biomarkers
    • Videos / Music
  • Orgs
    • Crisis Information
    • International ME-ICC Orgs
    • Australian ME-ICC Orgs
    • Canadian ME-ICC Orgs
    • E.U. ME-ICC Orgs
    • German ME-ICC Orgs
    • Irish ME-ICC Orgs
    • Japanese ME-ICC Orgs
    • New Zealand ME-ICC Orgs
    • Norwegian ME-ICC Orgs
    • Portuguese ME-ICC Orgs
    • South African ME-ICC Orgs
    • Spanish ME-ICC Orgs
    • Swiss ME-ICC Orgs
    • UK ME-ICC Orgs
    • US ME-ICC Orgs
  • Connect
    • Membership Application
    • FB Groups
    • Committees
    • Contact
  • Blog List
    • Outside Blogs on ME
  • Donate
    • Pulse Oximeter Fundraiser