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Guest blog by Kayla Doyle.
My name is Kayla.
In all areas of my 32 year long life I have been a voice for the little people in every aspect of my life including my career. So here I am Writing for ME International.
When I first looked at the information on the website I thought “WOW. How informative.” But my simple brain-fogged brain went “ Yeah, I can not read that.” LOL!! Now I don't know if it's because I was a whirlwind student and paid absolutely no attention in school, or if it was a combination of brain fog and ADHD. So here I am putting some of this into council estate, Independent chronically ill and also winging life language.
Today I will be telling you all about one of the symptom groups you will find you have when living with ME.
The first thing I will be covering is the Neurocognitive symptoms you will have.
Literally what does that word even mean and why is it so big!!
Through a little research I've figured out it's brain stuff!
So with this brain stuff when having ME symptoms you will find that you...
Just adding in one more funny!! As I write this my spell check is absolutely positive that Neurocognitive is spelt wrong!! So haa!! If my computer can't spell it then how can we process it?!!
I really hope that at least one person found this helpful. If I made someone smile, that is an extra bonus.
I wish you all the luck in the world in your ME journey and if you ever need anyone to reach out to for support or a non judgemental conversation, then contact the ME International Board members and they will get you on the right track!!
I am also always happy to hear from an ME warrior. So if you would like to connect with me personally, then just ask!
Much Love and Stay Strong!!
Note: The list of neurocognitive impairments can be found on page 7 of the #MEICPrimer
Step 1 - read through new recipe.
Step 2 - forget what you read.
Step 3 - get everything out.
Step 4 - rest.
Step 5 - remember the recipe is for four pizzas which you know you can’t manage, so decide to cut the recipe in fourths.
Step 6 - do the math with ME New Math. You all know it.
Step 7 - measure it all out and cover the bowl, done for the day.
Are you still with me?
Step 8 - mid morning, next day, read the next step of the recipe and realize you weren’t supposed to put the salt in because you have to proof the yeast first. But the water is already in and the 15 minute timer started.
Step 9 - rest, a bit defeated.
Step 10 - have a brilliant idea. Make a half recipe instead of 1/4. Add mixed flour from bowl and realize you just added more salt again.
Step 11 - light bulb moment; make the whole thing. Now though not sure how much I added of anything. New math is beginning to fail me; like it was ever not failing me.
Step 12 - add more flour, sugar and yeast kind of guessing at the amount after subtracting then adding backwards. Don’t ask. It’s possible with ME math.
Step 13 - reset the timer for the proofing.
Step 14 - have a lie down.
Step 15 - forget you have your science experiment.
Step 16 - after recovering from dizziness after rising too fast to race to the kitchen that’s 4 ft away, “yay! it’s proofed!” … and risen up the too small cup because it was supposed to be 1/4 the amount, over the sides and onto the counter.
Step 17 - scrape it into the bowl and add the rest of the flour that’s maybe the right amount and begin mixing. Hmmm, I’m sure I read that einkorn flour is a wetter dough. Ok, add more water. Then more water. Then more and ok, this kind of feels right. Einkorn isn’t as elastic because it’s low gluten.
Step 18 - read the instructions again for the next step. Whoops, olive oil was supposed to go in before kneading.
Step 19 - put dough back in bowl figuring I’ve already lost the flour and I’ve nothing to lose now. Stretch dough out and add oil. Knead again until it all feels incorporated. Phew!
Step 20 - put into bowl, cover with plastic, take a nap.
With reticence, I approach the bowl. It has risen its 30%. Still succeeding then!
Step 21 - read instructions. Cut and make 4 balls and place on cookie sheet. Set timer. Lay down.
Step 22 - fall asleep and some time later wake up and realize the alarm has not gone off. Check in with Alexa; no timer set. Oh, no! Forgot again to listen for her response. No idea how long it’s been but at least I turned the oven on so go for it.
Step 23 - pat dough out on flour dusted paper. Then remember you have to prepare the ingredients. Sigh. Ok. Get it done. Put it on the pizza. Transfer it to the stone in the oven. Set the timer for 13 minutes because the book says 15.
Step 24 - lie down of course! But, anxious, I check in with Alexa and at 10 minutes look in on it. Hmmm, browner than the photo. Pull it out to cool. Read the book again. Oh, on a stone it’s a lower temp. And not supposed to be on paper. And only 10 minutes. The paper is for cooking on a steel pan. Whoops.
Cut, eat. It’s not inedible. Call it a win. And three more not inedible doughs are in the freezer!
Cynthia Uribe (U.S.)
Seek life and living... then meet it.
Originally posted in the ME-I Chat room on Facebook. The ME-I Chat room is a Facebook group that utilizes the room feature allowing members to gather in video chats. See more HERE.
Cynthia lives, creates, and plays with her companion Molly who helps her keep her humor. Writing left her life along with gardening, baking, cooking, and many art interests when she became ill and very bedbound about 10 years ago. But all those are what helps her claw her way back to the living still. Writing is just now returning. Her most treasured is the last for her to regain. So she's put together a space for it and it's slowly growing.
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.
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.
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:
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:
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.
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:
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.
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
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 information provided at this site is not intended to diagnose or treat any illness and is not to be considered as medical advice.
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