While NICE Waffles, US Specialists Publish New Clinical Guidelines for ME/CFS

By David Tuller, DrPH

Two weeks ago, NICE abruptly announced that it was putting the brakes on publication of its new ME/CFS guidelines—a move precipitated by fierce opposition from key members of the GET/CBT ideological brigades in the British medical establishment. Then last week, Mayo Clinic Proceedings, a well-known journal, published a different set of ME/CFS guidelines that—like the unpublished NICE document—specifically advises against the traditional GET/CBT approach.

The article, developed by a group of specialists known as the US ME/CFS Clinician Coalition, is called “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management.” The clinicians make it clear that no treatments have been shown to be curative. Instead, they focus on advice for managing and treating symptoms like orthostatic intolerance, cognitive dysfunction, pain and sleep dysfunction. That the article appears in a publication affiliated with the Mayo Clinic represents something of an ironic twist. The Mayo Clinic has been pretty persistent in offering GET/CBT-type rehabilitation approaches for ME/CFS, despite years of appeals from patients. I hope in future Mayo patients bring a copy of this article to their appointments.

The guidelines focus mainly on the criteria for the illness established in 2015 by the National Academy of Medicine (formerly the Institute of Medicine), but also mention that many clinicians find both the 2003 Canadian Consensus Criteria for ME/CFS and its follow-up, the 2011 International Consensus Criteria for ME, to be helpful. Dr Lucinda Bateman, an ME/CFS specialist in Salt Lake City, reviewed the guidelines in a video posted on YouTube.

Medical journalist Miriam Tucker did her usual excellent job in covering the publication of the guidelines in an article for Medscape, so check out more of the details in her piece. “There are things clinicians can do now to help patients even without a disease-modifying treatment,” co-author Lily Chu, a physician and co-vice president of the International Association for CFS/ME, told Tucker. “These are actions they are already familiar with and carry out for people with other chronic diseases, which often have limited treatment options as well. Don’t underestimate the importance and value of supportive care for patients.”

The authors recognize that guidelines for ME/CFS have taken on added significance given the wave of patients reporting prolonged symptoms following acute bouts of COVID-19. “There are many steps that clinicians can take to improve the health, function, and quality of life of those with ME/CFS, including those in whom ME/CFS develops after COVID-19,” they write.

The guidelines are also explicit about the former standard of care involving GET and CBT, alone or in combination. As the paper notes, “the United States and other governments as well as major health care organizations have recently withdrawn graded exercise and cognitive-behavioral therapy as the treatment of choice for patients with ME/CFS.”

These guidelines represent the clinical experience of the leading American physicians in the field. These sorts of consensus views, of course, are subject to the biases of those doing the consenting. And it would be fair to note that, in a field with so much non-conclusive data and so much bad research promulgated by the GET/CBT promoters, it is hard to state much of anything with certainty. The guidelines do a good job of acknowledging the limitations of the research and discouraging unsupported claims of benefits.

In contrast, the powers-that-be in Britain continue to hype the GET/CBT approach, as evidenced by their efforts to derail the new NICE publication. Let’s hope that effort doesn’t succeed and that NICE finds the backbone to stand up to these anti-science zealots.





20 responses to “While NICE Waffles, US Specialists Publish New Clinical Guidelines for ME/CFS”

  1. Wendy Avatar

    The 2011 ICC for M.E. has nothing to do with CFS. It was written to replace the CCC 2003 which erroneously cited ME & CFS as the same thing. Carruther’s et el’ voided the CCC with the ICC. Carruthers & Sande also provided the ICPrimer 2012 as a diagnostic tool for physicians with no 6mth waiting period.

    ICC 2011 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3427890/

    IC Primer 2012 https://www.njmecfsa.org/wp-content/uploads/2009/12/ICC-primer-2012.pdf

  2. Wendy Avatar

    From the blog; “ The guidelines focus mainly on the criteria for the illness established in 2015 by the National Academy of Medicine (formerly the Institution of Medicine), but also mention that many clinicians find both the 2003 Canadian Consensus Criteria and its follow-up, the 2011 International Consensus Criteria, to be helpful.”

    The 2011 ICC & 2012 ICPrimer were written to replace the 2003 CCC because it erroneously stated that ME & CFS are the same thing. Carruther’s et el realized the problem and corrected it with the ICC.

  3. Alicia Butcher Ehrhardt, PhD Avatar
    Alicia Butcher Ehrhardt, PhD

    Since there is no way of definitively stating that a person with the same symptoms either has ME or has CFS, this constant harping on them being the same or different is ridiculous, harmful to finding a solution, and unsupportive of the patients living with these symptoms.

    What diagnosis you get depends on where, when, and who – and people living with ME/CFS don’t have the energy, the time, or the ability to participate in the charade.

    NOBODY who has had it for three decades, like myself, goes around looking for someone to make a ‘fine’ distinction that doesn’t exist. We just try to get through each day, and possibly get something done, when the help is non-existent for the illness as a whole.

    Find out why our cells don’t make energy. Find out – and fix it – and you can call it anything you like.

  4. Guido den Broeder Avatar
    Guido den Broeder

    Like the NICE guideline, the target group of this American guideline is SEID. Not ME, not CFS. An illness named ME/CFS doesn’t exist, the two are medically unrelated.

    This means that we have yet another pile of crap. There is virtually no literature on SEID, and the sources cited aren’t it. There are no leading experts in the field, because there is no field. It’s empty rhetoric.

    There is really nothing more to say. ME patients are once again victimized. What happened to do no harm, David?

  5. Ezzie Avatar

    ‘ME’ and ‘CFS’ are one and the same condition. The name was originally ME and it was changed to CFS in the mid-90s by psychiatrists. Now that the tide has turned back to calling it ME, the name ‘ME/CFS’ was adopted to try to avoid confusion. See here for the 1996 TV news piece on the name change: https://www.youtube.com/watch?v=qrVO1s8u3K0

  6. Ezzie Avatar

    PS: The important thing to remember is that ME, or CFS, is not CF, which is an entirely different condition. That’s the distinction a lot of folks both in the media and medical practice seem unable to make.

  7. Guido den Broeder Avatar
    Guido den Broeder

    Ezzie, don’t build your beliefs on a random news item.

    Wessely’s unfounded proposal was rejected by the WHO (the authority, backed up by thousands of experts from all over the world).

    ME is a specific vascular neuroimmune disease of enteroviral cause, akin to polio. CFS is a research diagnosis for unexplained fatigue and malaise.

  8. Ezzie Avatar

    @ Guido: I haven’t built my beliefs on a random news item, thanks. I got ME in 1983 when it was called ME and was considered a physical illness, with much biomedical research into it at the time, and then saw the horrifying mess unfold when the psychs took over and were allowed to run with their own pet theories about it being ‘fatigue’ and how to treat that. I know the score.

    Nobody knows for sure what ME ‘is’, aside from a post-viral syndrome. It was thought in the 1950s that it may be ‘atypical polio’ but there is no evidence for that. Hoping that current biomedical research will pick up where it left off in the 1980s.

  9. Guido den Broeder Avatar
    Guido den Broeder

    The name ME tells you what it is. If someone claims not to know this, they have ulterior motives.

    The nature of ME has been known since 1905, that is why the name was chosen after the definition of polio changed in 1954.

    You can see it on a SPECT, PET or qEEG scan and there are many markers. See e.g. Hyde (2020), ‘Understanding Myalgic Encephalomyelitis’.

    Only about 2% of all SEID patients have ME, so research into SEID will not be of much help.

  10. LC Avatar

    Hi, Guido, where is the source of your statement “Only about 2% of all SEID patients have ME, so research into SEID will not be of much help.” I’d really like to know.

    Back in 2017, I did a study examining the overlap between CCC, ME-ICC, and SEID to see how much overlap there was or wasn’t between the different case definitions. The overlap between SEID and CCC was 97% and SEID and ME-ICC was 95%. I was hoping more of these studies would be done after mine comparing the different definitions – not just by comparing lists of symptoms (which many do) – but by comparing the presence of symptoms among actual patients. That has not been done as far as I know.


    BTW, if you mean that only 2% of patients presenting to a clinic with chronic fatigue end up being diagnosed with SEID, that would be correct. That is what the CDC found recently and in line with what is expected: whether ME, ME/CFS, or even CFS, generally 10% or less of chronic fatigue patients are eventually diagnosed with these conditions. Most have fatigue due to lifestyle factors (e.g. overwork, lack of sleep) or other medical / psychiatric conditions.

  11. Guido den Broeder Avatar
    Guido den Broeder

    There must have been some major mistakes in that study.

    The prevalence of SEID is about 1.1% (Jason). Remember, SEID has no exclusions. The prevalence of ME is about 0.08%. However of all ME patients, less than 30% fulfills the SEID criteria (Stichting ME Research).

  12. Wendy Avatar

    As long as we have Licensed Terrorists using psychological warfare against those who are living with a debilitating neurological disease called & recognized as Myalgic Encephalomyelitis we must defend ourselves in every way possible. This is a disease that’s been around for decades, long before 1988, and it has nothing to do with CF, CFS or ME/CFS.

    Our needs are different, our criteria is different and the neglect inflicted on us is different. Those who claim we are quarrelling about the name simply don’t understand or don’t want to understand that we have a disease that is different. SPECT and/or QEEG Scans can prove it.

  13. Flora Christian Avatar
    Flora Christian

    How many of us have acces to PET or SPECT scans I have never been offered one. There is none in my local hospital perhaps there is one in one of the 3 high tech hosps in our capital I don’t know for sure but I’ve never been offered one. I have had issues since age 11 folliwing a Bornholms like virus and begining of my Endometriosis journey. Is my condition CFS/FMS, ME, CF ir plain Endometriosis fatigue but whatever I have the same cognative symptoms described by the Dutch psychologist on YouTube, I have issues with sleep quantity & quality I have fasiculations, post exertational fatigue, doesn’t everyone that has a debilitating chronic illness have exasperation of symptoms after exertion? I imagine if you have a debilitating condition pushing through will only make it worse it’s like flogging a worn out horse. Anyways research suggests that 36.1% of Endometriosis patients qualify for ME/CFS diagnosis and yes I did have Mononucleosis aged 28. Whatever you choose to call my conditiob it’s real I can barely stand up & walk a few feet now. I’m sick & tired of the my ME ia real & yours isn’t arguments how can we expect clinicians to take us seriously when all sufferers do is argue among them selves. Time to pull together & stop all the bickering what other illness does this happen in? I haven’t either the time, energy or cognitive resilience to read all these research papers that ye quote. I know sone if ye are Byron Hyde fans but hes no longer practising that’s another story.

  14. Guido den Broeder Avatar
    Guido den Broeder

    Flora Christian, ME/CFS is not ME, whether self-diagnosed or not. Endometriosis is not ME. There exists no Bornholm virus.

    If the diagnostics that you need are only available in your capital, go to your capital.

    You are right that post-exertional complaints are quite common, but that’s exactly why it doesn’t follow that you have ME. There are many other real diseases, like Bornholm Disease.

    ME patients have nothing to gain by pulling together with patients that don’t have it but satisfy some random criteria, have a different cause of their medical complaints and different expectations, need different treatment, management, prevention, and so forth. We would invariably end up as a small and completely ignored minority.

    Byron Hyde’s retirement has nothing to do with any of this. It doesn’t follow that you can suddenly ignore all the medical literature on ME and the WHO’s international classification of diseases.

  15. JL Avatar

    I’m hoping the Google search page information box will soon catch up, too. It is still saying that GPs, Psychologists and Psychiatrists are the treating professionals, and the medications are antidepressants. It cites sources as “Mayo Clinic and others”.

  16. Lady Shambles Avatar
    Lady Shambles

    Guido said:
    “ME patients have nothing to gain by pulling together with patients that don’t have it but satisfy some random criteria, have a different cause of their medical complaints and different expectations, need different treatment, management, prevention, and so forth. We would invariably end up as a small and completely ignored minority.”

    And the reverse is true. Those who don’t have ME have nothing to gain by being lumped in with a disease for which no one seems to care. As a long term patient I have time and again revisited the diagnosis in vain hope that it isn’t correct and I have something else which is amenable to treatment options. Indeed a ‘something else’ which *has* treatment options. Why anyone who is given the ‘ME moniker (and especially the inappropriate synonyms such as ‘ME/CFS’ or ‘CFS/ME’ or ‘CFS’) insists on the diagnosis without fully investigating every other possibility (which takes time, energy and very often money and isn’t easy to do, granted) I have no idea. It strikes me as a peculiar form of cognitive dissonance which could be doing patients harm. Nobody is saying that those who don’t fit the strict ICC ME criteria isn’t ill. But in no other field of medicine (as far as I’m aware.. please correct me if I’m wrong) is a disease, which has pretty much a one in two possibility of being wrong, allowed to stand uncritically, despite this poor record for misdiagnosis, where patients themselves are happy to cling to something which could, for them, be completely fallacious. We know why ‘the powers that be’ are ok with this situation (the politics of that has been well described and we can see it being played out in real time now) but that patients go along with the charade is bizarre, isn’t it? This is a disease that nobody wants (I suppose no one wants to be ill but there are easier diseases to live with..ME has rested at the ‘bottom’ of most QoL tables for many years now) so why be so entrenched? Why refuse to contemplate the possibility that you could relinquish your diagnosis for a different, better understood, better treated disease? That’s the mindset I find, after all these years, most curious…. unfathomable.

    I’ll apologise in advance for errors: typos, syntax, grammar. I’m extremely cognitively challenged now.

  17. jimells Avatar

    Insistent claims that these “MUST be the same” or “MUST be different” all tend to lack references. Without supporting evidence there is no logical way to make conclusions.

    Strident voices might want to keep that in mind.

  18. Wendy Avatar

    “ Insistent claims that these “MUST be the same” or “MUST be different” all tend to lack references. Without supporting evidence there is no logical way to make conclusions.

    Strident voices might want to keep that in mind.”

    There is tons of research available for Myalgic Encephalomyelitis that backs up what is being said here about ME but when I included it in my first comment, it got lost in moderation. You’re welcome to contact me for links or scroll through the GAME-ICC Facebook page at your convenience.

  19. Guido den Broeder Avatar
    Guido den Broeder

    jimells, can you please indicate which CFS criteria say that patients have brain and spinal inflammation, and which ME definition says that patients suffer from chronic fatigue?

  20. jimells Avatar

    Dr Tuller, I apologize for adding to the food fight on your webpage.