A historic change for the ME/CFS community

Today, on 29 October 2021, the National Institute for Health and Care Excellence (NICE) has finally published its new guideline on the diagnosis and management of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). The development of the guideline has been a long process mired with controversy, criticism, and unexpected delays. Its final publication, however, represents a historic change for the ME/CFS community. This blog post tries to clarify why.

The psychosomatic model

For those who could use some background info going into this story: ME/CFS is a chronic illness that causes debilitating fatigue, concentration problems, and many other dreadful symptoms. It often starts after infection but its cause and pathology remain largely unknown. Patients can become terribly ill (some are bedbound) but lab tests usually come back normal. Although the prognosis for ME/CFS varies, it’s usually unfavorable. Many patients remain incapacitated for decades.

The syndrome received increased attention after the Centers for Disease Control and Prevention (CDC) published a case definition in 1988. For most of the years that followed, the standard medical approach to ME/CFS was based on a psychosomatic model. It assumed that ME/CFS symptoms are the result of unhelpful thoughts and avoidance of activity. According to the theory, patients might have rested too much after infection and misinterpreted lingering fatigue after resuming activities as a sign that they were still sick and therefore needed to rest more.

A vicious cycle was envisioned which started with the patient’s belief in an organic disease as the cause of her (most ME/CFS patients are women) problems. This resulted in avoidance of activity, deconditioning, sleep disruption, anxiety, depression, and eventually more fatigue. The more symptoms the patient got, the more she rested, and then the cycle started all over again.

The group of mostly British psychiatrists who had formulated this fear-avoidance theory claimed to have a solution. Rehabilitative interventions were seen as a way out of the vicious cycle. The goal was to change patients’ beliefs about the cause of their illness and show that they could safely resume activities as long as they did so in a gradual and supervised way. Cognitive behavioral therapy (CBT) was offered to change patients’ “unhelpful” cognitions while graded exercise therapy (GET) was the tool to get patients back in shape.

This storyline was immensely popular among healthcare professionals. Until recently, it was the dominant narrative in prestigious medical journals such as The Lancet and the BMJ. It was dressed up in fancy terms such as kinesiophobia, somatic attributions, fear-avoidance, catastrophizing, and so forth. Because standard medical tests failed to show any abnormalities, it was easily assumed that there must be something wrong with the patients’ thoughts or behavior. Not the doctor’s ignorance but the patients were to blame. And GET and CBT offered easy solutions. Patients were told they could get better if they wanted to and tried hard enough. The previous NICE guidance on ME/CFS, published in 2007, recommended both GET and CBT.  

Post-exertional malaise

Since the beginning of this theory, patients and some scientists performing biomedical research have voiced their objections. ME/CFS patients desperately want to be more active but can’t. Each time they try to do more and push through, their symptoms get worse. In the scientific literature, this phenomenon is referred to as “post-exertional malaise (PEM)”. Nowadays, it is generally viewed as one of the most characteristic features of ME/CFS. It looks like this: the patient overextends herself – for example for a doctor visit or family meeting –  seems to be doing relatively fine but then suffers a severe setback afterward. This setback is often delayed and happens each time patients exceed their energy limit. It takes them a long time to recover and get back to the level they had before. Some say it feels like being trapped in a prison of energy limitation that gets smaller each time you try to escape.

GET and CBT assume that this prison is a dangerous illusion, that patients can safely increase their activity levels, and that they can fully recover by doing more. As one infamous paper stated, these treatments “assume that the syndrome is perpetuated by reversible physiological changes of deconditioning and avoidance of activity.” As soon as these treatments became the medical standard to treat ME/CFS, however, patients started reporting harm. In surveys that span multiple decades and various countries, ME/CFS patients have said that they became worse following GET and CBT or that they had to quit these treatments prematurely because their health deteriorated.

In part because of these reports of harm, patients and researchers started looking more closely at the scientific evidence for these interventions. ME/CFS is a heterogeneous condition with vague diagnostic criteria. One could assume that some patients responded favorably to these treatments while they have just the opposite effect in a different subgroup. This was a common assumption at the time. The more people looked at the evidence base, however, the more it became clear that it was seriously flawed. There was no reliable indication that these treatments worked for anyone. At long-term follow-up, the control group did just as well (or as bad, depending on how you look at it).

Ever since, patients and their families have been trying to get the attention of scientists to take a closer look at these problems. They wrote letters to scientific journals and pointed out that there is no method in place for monitoring adverse outcomes of GET and CBT. A collaboration of patients and scientists showed that the largest trial of these treatments had misleadingly claimed they were effective. After a tribunal ordered the release of the raw data, it was shown that improvement rates were inflated threefold. The more experts looked at the science behind the psychosomatic model of ME/CFS and its preferred treatments, the greater skepticism grew. Then, in September 2017, NICE decided it was time to review its guideline on ME/CFS.

The NICE review

By this time pretty much all ME/CFS organizations were advocating against GET, CBT, and the psychosomatic model. The feedback they got from patients suggested something was going wrong. They requested a thorough review of the evidence and NICE was the appropriate institute for this, producing evidence-based guidelines that are well-respected and influential even outside England and Wales.

NICE gathered a panel of 21 experts with different perspectives on ME/CFS. Although most were physicians, the guideline development group also included a psychologist, social worker, nurse, dietician, and several patients. They assessed the evidence for a long period of approximately 3 years. NICE also conducted a thorough review of the scientific evidence using a standardized approach. It published hundreds of pages full of assessment tables. On top of that, it performed its own qualitative research, for example, on the experiences of children with ME/CFS and patients with severe ME/CFS.

The NICE committee concluded that the evidence for GET and CBT was of “low to very low quality”. The guideline says that GET should no longer be recommended while CBT should only be offered to help patients cope with their chronic illness. It should not be offered as a cure for ME/CFS. Although the final guideline is a compromise where many issues remain (more about that in later blog posts) the overall message is clear. The psychosomatic theory of ME/CFS is viewed as misguided while many of the concerns patients have raised are vindicated.

NICE isn’t the only medical institution that came to that conclusion. The Healthcare Councils of Belgium and the Netherlands recently made a similar U-turn regarding the use of GET. In the United States, the website of the CDC no longer recommends GET and CBT for ME/CFS. Cochrane, another influential player in the medical field, is currently in the process of revising its systematic review on GET for ME/CFS.

The UK however, has always been the stronghold of the psychosomatic view of ME/CFS. It’s where most of the trials of GET and CBT were conducted. A relatively small group of British ‘experts’ has been able to present its psychosomatic approach to ME/CFS as evidence-based without much opposition. With the publications of the new NICE guideline, it seems that those days are over. For the ME/CFS community 29 October may turn out to be a historical turning point. Hopefully, this will open the way to more fruitful scientific research on the illness and eventually, a cure.

6 thoughts on “A historic change for the ME/CFS community

  1. Alicia Butcher Ehrhardt says:

    Thanks for your detailed and prompt analysis.

    The statement that a major physical disease “started with the patient’s belief in an organic disease as the cause of her (most ME/CFS patients are women) problems” is deeply misogynistic.

    It is galling, and follows previous ‘theories’ of hysteria and wandering wombs. The idea that women recover from many other diseases just fine, but that a bunch WITH THE SAME SYMPTOMS are somehow keeping themselves ill because they like it or get something out of it (so contrary to the evidence of lives, including men’s, which were productive and then suddenly became unlivable) is ludicrous.

    The amount of gaslighting by this small group of psychobabble pseudo-scientists has been of epic proportions. It saved money somewhere, and kept some ‘reputations’ alive, and caused unimaginable harm, including death and much exacerbation, to countless people unlucky enough to run up against their ignorance. And of course derailed legitimate research for decades.

    Research that might have put the world in the position to HELP those now victims of not recovering from another virus – the long-covid cohort.

    Already being blamed by many on malingering women. History will not be kind.

    My career in research physics but a distant memory three decades later, I mourn with you.

    Reply
  2. Alan Gurwitt says:

    This historical review is going in the right direction but is highly flawed. It is based on the events in the UK. There is nothing about the research in the USA, Canada, Australia, New Zealand, Norway, There is little that is vague but there is much research yet to be done. to reach a comprehensive scientific understanding. British psychiatrists have misled the world, Now that solid research is underway in many countries there is hope that we will finally figure out the true pathology and following that better forms of treatment

    Reply
    1. ME/CFS skeptic says:

      Thanks for your comment. It’s true that the article focuses mostly on the UK but that was the intention. British research on ME/CFS has been highly influential in the rest of the world. So now that things are changing in the UK, this can be seen as a big deal for the whole ME/CFS community. We hope to write about other ME/CFS research in future blog posts.

      Reply
  3. annique boomsma says:

    The fact that long-Covid has sparked an interest in the scientific and medical community in figuring out what causes this fall-out from a viral illness is a blessing for the ME/CFS community, of which I am one, but it also is painful that it took so incredibly long for scientists and the medical world to take ME/CFS serious and find ways to really help us, rather than take shots in the dark some of which help but never provide a cure or even prevent crashes, post-exertional malaise etc. I hope a cure is found for these illnesses with a viral (or traumatic) onset.

    Reply
  4. Michael Dyson says:

    I think we all seek an explanation for why the 2021 guideline is in some respects a total repudiation of the 2007 guideline. If evidence for GET was in principle inadequate in 2007 then why didn’t NICE pick up on that back then? Was GRADE not around in 2007 or was it applied differently? It’s clear enough that if studies purporting to support an intervention fail on the basis requirements of being genuinely scientific then the justification for rejecting them was there in 2007; there was no need to wait another 14 years.

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  5. not very sharpe says:

    Why were psychologists ever permitted to hijack control of the entire narrative over ‘research’ into a medical illness?
    Why didn’t anyone qualified ever expose that they were being paid by reinsurers to deny medical care to patients–directly and indirectly? Grossly unethical to make these claims and fail to disclose this.
    Why didn’t anyone qualified and independent review their falsified data and identify it immediately, thereby saving decades of torture of millions of patients worldwide based on their “work?”

    Why, with complete access to all of this information and many calls to make review and correction, have NICE and GMAUK and Parliament refused to hold themselves and these Psychologist frauds accountable? This is CRIMINAL. It requires investigation, prosecution, compensation (not that money is ever adequate to replace lives lost or years of torture), and an immediate stop to their ongoing campaigns of fraud and slander.

    The wishy washy language by even those who are supporters (thanks, but PLEASE….) must mutate to the appropriate level of forcefulness and clarity. Call for action: accountability in every legal forum possible and immediately.

    At the same moment, a tremendous surge of funding is necessary to accelerate research, treatment and supportive care now.

    Reply

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