The Failure of Clinical Guidance for People with ME

ME advocate Mary Dimmock has written a comprehensive report about the flawed science that led to the recommendation of cognitive behavioral therapy (CBT) and graded exercise therapy (GET) for people with Myalgic Encephalomyelitis.

 The patient community has long reported these treatments to be ineffective and harmful, and, yet, health societies and governments across the world continue to recommend them as treatment, including the Mayo Clinic and UK government.


Below is a two-page excerpt from Dimmock’s report. Read her full paper here.

Clinical Guidance for ME: “Evidence-Based” Guidance Gone Awry

This article is intended as a high-level summary of key issues in the conduct of ME “evidence- based” reviews and clinical guidance that have resulted in flawed guidance. This has misled medical providers on the nature of ME and its appropriate treatment and put people with ME at risk of harm.
Comments can be sent to [email protected].
For many years, ME evidence-based reviews and clinical guidance globally, such as those from Cochrane, UpToDate, Mayo, NICE, and various medical journals and societies around the world have recommended cognitive behavioral therapy (CBT) and graded exercise therapy (GET) as effective and safe treatments for ME. Further, these sources have sometimes claimed that disease risk and poor prognosis is the result of behavioral and psychological factors such as maladaptive coping, a history of abuse, perfectionism, and the patient’s belief that the disease is organic. In spite of patient surveys and ancedotal reports that these treatments were not only ineffective but harmful, these recommendations and statements have remained.
Since 2015, a growing chorus of international journalists and scientists, along with reports by the U.S. Health and Human Services have documented serious deficiencies in the supporting studies that call into question the validity of these recommendations. In parallel, the U.S. Institute of Medicine (IOM, now called the National Academy of Medicine) published a report that directly contradicts the disease theory underpinning these studies. These deficiencies and contradictions include the following (Further details in Appendix II):

  1. Lack of external validity: According to the US Agency for Healthcare Research and Quality (AHRQ), the use of an overly broad definition (the Oxford definition) in many of these studies resulted in the inclusion of “patients who may have an alternate fatiguing illness.” The 2016 AHRQ report also noted that studies using more specific definitions requiring hallmark symptoms of ME such as an abnormal response to exertion were “blatantly missing.” After excluding Oxford studies from its analysis, AHRQ found no evidence of effectiveness for GET and barely any for CBT. This raises serious questions about the validity of applying CBT and GET recommendations to people with ME.
  2. Study design and conduct issues: The CBT and GET evidence base is biased by unblinded studies that relied on subjective outcome measures, ignored or dismissed objective findings that contradicted subjective reports, switched outcomes, inflated claims of improvement and recovery, and contained other significant problems in the design and conduct of studies. The issues in these studies, including the UK’s flagship £5 million PACE trial, call into question the quality and reliability of claims of CBT and GET effectiveness.
  3. Inadequate reporting of harms: Conclusions that these therapies are safe are based on studies that inadequately reported adverse effects and did not monitor treatment compliance. Further, neither the evidence reviews such as Cochrane nor the individual studies adequately account for patient survey reports of harm from these therapies. Nor do they account for the published biomedical evidence and the IOM report demonstrating the disease’s abnormal physiological response to exertion, a response that supports concerns with the risk of harm from exertion. Claims of CBT and GET safety are not supported by the evidence.
  4. Flawed disease theory: The disease theory underlying the use of CBT and GET in this disease is that the symptoms and the debility are not the result of an organic disease but rather the result of deconditioning which in turn is the result of false cognitions and a fear of activity. This disease theory also links a predisposition to the disease and poor prognosis with behavioral and psychological factors such as those described above. This theory is unproven and the studies cited to support it have most often used the overly broad Oxford definition which could include patients with a primary mental illness. But more importantly, this psychogenic theory cannot be reconciled with the 2015 Institute of Medicine report which found that ME is not psychological or a problem of deconditioning. Instead, the IOM found substantial evidence of neurological, immunological, autonomic, and energy metabolism impairment. In no other disease would such impairment be treated by talk therapy intended to convince the patients they are not really sick. The ethicality of doing do in this disease must be questioned.

In July 2017, the US Centers for Disease Control and Prevention (CDC) removed long-standing recommendations for CBT and GET from its website. Yet, today, the vast majority of providers for clinical guidance for ME globally still continue to use these flawed studies as the basis of CBT and GET recommendations and conclusions about poor prognosis.
In Japan, recommendations for CBT and GET are scheduled to be published in a widely read medical journal in March. In the UK, NICE has agreed to review its guidelines but the current CBT and GET recommendations remain. In the US, even clinical guidance that has adopted the IOM criteria with its hallmark abnormal response to exertion still recommends CBT and GET. For instance, one medical education provider has adopted the IOM criteria and IOM-derived statements about neurological, immunological, and metabolism impairment but then goes on to recommend PACE-style CBT and GET and link poor prognosis to a patient’s belief that the disease is physical.
It is stunning that such highly regarded organizations continue to produce “evidence-based” guidance for ME using such poor-quality, contested, and inappropriate evidence. Doing so not only misleads medical providers on the nature of ME and its appropriate treatment but puts people with ME at direct risk of significant harm by their medical providers.
To best protect patients from further harm, it is essential that evidence review publishers such as Cochrane and providers of evidence-based clinical guidance such as Uptodate, Healthwise, Mayo, and various medical societies reevaluate the quality and validity of the evidence that they are using to support their conclusions and recommendations for ME. It is essential that these organizations update their reviews and guidance to remove the erroneous conclusions and recommendations based on poorly conducted, invalid studies and to incorporate what is known today about the biopathology of ME and its proper treatment.
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8 thoughts on “The Failure of Clinical Guidance for People with ME”

  1. It’s an excellent summary, but the decision to only use the label ME when discussing the studies and the treatment guidelines renders this useless for the majority of ME patients whose doctors have diagnosed their illness with the label CFS.

    1. I can’t agree that using ME rather than CFS here changes the validity or usefulness of this important article. It is well known that ME has been used, rightly, or in my opinion wrongly, interchangeably with CFS or ME/ CFS by many doctors and the problem of the lack of an agreed distinction remains either way. Using the label CFS is much more likely to be a problem.

  2. Rebecca Susan Culbertson

    Thank you for your work on this subject. My former physician pressured & pressured me to exercise. I have had CFS/ME for 30+ yrs. I used to run a mile every morning, then I couldn’t walk 10 feet by myself. I gave in to my doctor’s pressure & attempted treadmill walking in a slow, gentle pace. I began to try walking a bit longer, a bit faster, and I ended up hospitalized with a complete relapse. #MEACTION, please keep telling CFS/ME patients & their physicians that exercise has the complete opposite effect desired.

  3. Thank you very much Mary, for this excellent continuance of your work re GET and coercive CBT, contraindicated for ME.
    Two points:
    1) Page 6 of your article says the 2013 PACE Recovery publication noted the researchers modified Fukuda to only require one week of symptoms, not 6 months. Since first reading this some time ago, I have always thought this is a glaring problem. One week of ME-like symptoms could mean a person has the flu, not ME. It is puzzling that governments and medical establishments take this study seriously with such a criteria modification, even setting aside all the other many glaring problems. And, it is ironic for the millions of pwME who go for years without a diagnosis. These researchers can apparently diagnose a pwME in one week!
    2) I wonder how the PACE researchers explain active pwME who experience gradual onset. If one slowly develops ME, after, let’s say, a bout of Mono, all the while still exercising a great deal, e.g. several hours/week, how do the PACE practitioners explain the development of ME in these cases? How do they fit these people into their theory? How do they explain that maintaining an active exercise regime did not stave off ME? Of course, we know it doesn’t, and there are countless pwME who led very active lives before ME. Many of them who experienced gradual onset, but remained very active, until ME finally overcame them.
    Thanks very much Mary, for your extremely valuable work in this area!

  4. Excellent! TY to Mary Dimmock.
    It’s certainty that if more accurate definitions such as the International Consensus, the Canadian, or the Nightingale Definition were used, and objective improvements required (vs. rather than pressuring the patient to think of themselves as better, and then “reporting” the results of this process) the improvements claimed would evaporate.
    This is striking as, in an era of Evidence Based Medicine… these improvements are the sole “evidence” presented for the exercise avoidance-deconditioning theory of ME. Most likely what deconditioning in ME is of similar scale to any other chronic disease of equal severity.
    How many people have been harmed, or even killed, by following such obviously flawed guidelines already? Considering all the people who report harms in patient support groups or forums, it must be very many…
    It is madness that such flawed guidelines should dominate medical practice in the US, UK, and many other advanced nations for so long.

  5. This is a stunning, scholarly work, Mary, thanks so much!
    When a whole society finds reasons to ignore continuing damage to a particular group in the teeth of evidence such as this, we have to seek the reasons
    Attitudes to women, embedded in language: women ‘complain’ of symptoms, men ‘report’ symptoms. Men are more likely to be taken seriously, women are offered reassurance, tranquillizer and told they ‘must be depressed’.
    The valorisation of exercise as invariably beneficial to health.
    The concept of ‘fighting’ illness, the importance of denying and ignoring symptoms.
    Economic pressures…sick and disabled people are assumed to be malingering for personal benefit. Appropriate provision of ‘sick leave’ has been replaced by sanctions and threat of job loss if days off are taken, forcing people to come to work even when ill.
    The same policies are now applied in schools, with parents threatened if children do not have perfect attendance records.
    A major factor in the acceptance of CBT and GET for people with ME is the unspoken assumption that these treatments will get people back to work/children back to school.
    Insurers have clear financial interests in hiring psychiatrists who will keep ME patients within a psychiatric classification, allowing them to limit disability payments.
    The psychiatrists who work for insurance agencies also have great influence within the UK political establishment, and will continue to use every strategy at their disposal to maintain the current situation. This is the fundamental reason why the wide scientific discrediting of PACE and related documents is having so little effect.
    When we can show that appropriate treatment of people with ME (as Ramsay recommended, rest from the inception) is what will help patients regain function and be able to resume their jobs/education…and that CBT and GET have spectacularly failed to do this…then maybe policies will begin to be revised.
    On ME/CFS: Patients are right to insist that the disease be called ME, and the use of CFS discontinued, as the IOM recommended. However, because the US CDC gradually ‘disappeared’ ME and only referred to CFS in its website for several years, many people in the US and elsewhere only know their disease by the name ‘CFS’. Some have never heard of ME and know nothing about it.
    Wessely has suggested calling the disease ‘CFS/ME’ and then losing ME, and this is what the CDC did. In the meantime, I use ME/CFS to flag to anyone who has ME but has been given the label CFS, that there is information, research and advocacy support for them out there. (It was Strauss’s stated intention to make ME disappear as a distinct disease by widening the definition, calling it CFS, and making research focus on the symptom of fatigue…obvious he was successful.)
    Conflating depression and ME. They are virtually opposite conditions, including the fact that depressed mood is lifted by exertion, while ME is made worse by it.
    The use of the word ‘fatigue’ facilitates the confusion, and should be retired in both cases.
    People with ME do not have ‘fatigue’, they have progressive muscle failure upon minimal exertion; multisystem harm upon protracted exertion.
    People who are depressed are not ‘fatigued’, they are in emotional distress..sad, discouraged, self-critical, they have ‘apathy’, not ‘fatigue’.
    Finally can we start a campaign, like the anti-drug one: When offered GET, JUST SAY NO.
    And like the women’s rights movement, to our doctors who offer us GET: NO MEANS NO!

  6. Thank you very much Nancy, for your laser analysis:
    1) Phrases and notions we take for granted in our everyday life, and how these beliefs affect the millions with ME. The women’s movement for one, has noted these many societal attitudes that view men as assertive and powerful, and women as bitches for saying, or doing the same things.
    2) Some, have noted the case definition for depression is very broad; yet another example of the psychologizing of our lives. And, as with many other diseases, as you say, depression has been conflated with ME.
    3) Over time, we have seen biomedical science topple psychology’s reign over such diseases as asthma, stomach ulcers, some forms of arthritis, epilepsy, MS etc. Psychiatrists’ authority over many diseases has notably diminished. As you say, practitioners with vested interests, will continue to push back with every available weapon to keep ME in their realm. This is why public awareness, and in particular education for those with this devastating disease, as well as medical professionals is so vital.
    4) We can learn a lot from other civil rights and environmental movements. There was an excellent article in a Canadian newspaper this week about environmental concerns, and governments ignoring science in favour of preferred political information: “Case studies revealed governments justifying politically preferred policies by exaggerating — without empirical confirmation — the size and resilience of carnivore populations. Such contempt of the public trust fosters what the authors term, ‘political populations’ — those with imaginary attributes contrived to serve political interests.”
    We, in the ME community are also a “political population”; we have been given imaginary attributes. It’s an easy step for those with vested interests in keeping ME in the psychiatric bailiwick to use the embedded suspicions of the sick and disabled, misogyny, and even the tendency in some, toward mistreatment of others to inflate one’s own ego, as tools to promote ME as merely a figment of the imagination. A psychological condition requiring guidance from mental health practitioners in the form of GET and coercive CBT. Thank you again to Mary Dimmock, and thank you Nancy, for revealing some of the underlying societal beliefs that help perpetuate erroneous health policies about the ME community.

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