By David Tuller, DrPH
I often feel so far behind in keeping up with developments in this field. Here are a few recent items I wanted to highlight.
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Action For ME’s report on NHS adoption of the new NICE guidelines
In October, 2021, after a protracted and highly contentious process, the UK’s National Institute for Health and Care Excellence (NICE) published new guidelines for ME/CFS. These guidelines rescinded the previous recommendations for graded exercise therapy (GET) and for cognitive behavior therapy (CBT) as a curative treatment. The new document is specifically meant to provide direction for the English branch of the National Health Service but is not legally binding on clinicians. Beyond England, NICE guidelines are often very influential throughout the UK and around the world.
NHS England administers health care through local and regional entities called NHS Foundation Trusts and Integrated Care Boards (ICBs). After the publication of the new guidelines, patients began reporting that many local trusts were either not aware of or not adopting the new approach—at least per the information on their websites, which often still highlighted GET and CBT as treatments for the illness. To counter these delays in response, the ME Association began contacting individual trusts and alerting them of the NICE changes, with some success.
Last month, Action for ME published a report based on freedom of information requests that it had submitted to all 162 NHS trusts and ICBs across England; 109 responded. According to a statement from the organization, “Our FOI report has revealed that people with M.E. are dealing with shockingly poor and patchy provision of services in England.” Among the key findings: only 28% of NHS Trusts and ICBs have implemented the 2021 NICE guidelines.
In her forward to the report, Action for ME’s chief executive, Sonya Chowdbury, wrote this: “It is apparent that there remains a lack of understanding of the pathways for patients who present symptoms of ME/CFS. Many of the responses highlighted that there is little to no central data gathering, and lack of follow through in support services through to a personalised care and support plan.”
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Brian Hughes deconstructs “myths” about the guidelines
Speaking of the NICE situation…My friend and colleague Brian Hughes, a psychology professor at the University of Galway in Ireland, gave a talk in Belfast on International ME Awareness Day called “Getting it Right: Addressing Myths about the 2021 NICE Guideline for ME/CFS.” The conference at which he spoke was organized by the charity Hope 4 ME & Fibro Northern Ireland. (He is a scientific advisor for the group.)
The video of his talk has recently been posted on youtube, and it is well worth watching. In his presentation, Professor Hughes discusses various misstatements about the guidelines, and about the process for developing them, that “are currently being pushed from certain quarters,” as he noted on a recent post on his blog, The Science Bit. “Certain quarters” is a polite way of referring to the committed members of the CBT/GET ideological brigades.
After publication of the new guidelines, those on the losing side of the debate leveraged their influence to publish high-profile whines in major journals. They mounted and continue to mount bogus arguments in opposing the vision. Some of these myths, as Professor Hughes calls them, are the following:
*“CBT and GET are ‘evidence-based’ treatments for ME/CFS!”
*“Evidence cannot just ‘change’!”
*“The NICE review was driven by patient advocacy!”
*“The defenders of the old guideline are simply standing up for science!”
*“You cannot evaluate ME/CFS outcomes using objective measures!”
(Related: I recently interviewed Brian about his latest book, A Conceptual History of Psychology.)
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Professor Sharpe spouts his usual nonsense in San Francisco speech
One of the big losers in NICE’s decision to rescind its previous recommendations was Professor Michael Sharpe, co-lead investigator of the discredited and arguably fraudulent PACE trial—the ur-trial for the misguided psycho-behavioral treatment approach to ME/CFS. As with other research into CBT and GET, NICE’s review of the literature found PACE and related research to be of poor quality.
That humiliating public rebuke has not caused Professor Sharpe to stop touting his theory of a “vicious cycle” causing a syndrome that benefits from CBT and GET. He did this again in late May—in San Francisco, my home turf–in a speech to the gathered eminences at the American Psychiatric Association’s annual conference.
I was lucky to have forgotten about the event until after it happened. Otherwise, I might have felt compelled to attend and listen to his musings out of some sort of misguided sense of professional obligation. In any event, for those who missed it, his talk was written up in an article in Psychiatric News, the APA’s house organ.
Professor Sharpe was the recipient of something called the Adolf Meyer Award. The annual Adolf Meyer Award Lecture given by the honoree “advances psychiatric research by enabling psychiatrists and other conference attendees to hear and interact with outstanding research scientists.” Ok, then.
The article in Psychiatric News included the following passage, which mentions and links to a 1996 study but seems to be describing the PACE study, whose first results were published in 2011 in The Lancet. I assume this conflation was an error on the part of the journalist; Professor Sharpe is proud of PACE and I see no reason why he would tout a 1996 paper instead. Anyway, here’s the key passage from the article:
“In patients with chronic fatigue syndrome (sometimes called myalgic encephalomyelitis), Sharpe described a “vicious circle” of fatigue, fear of fatigue, avoidance of activity, disability, and physiological changes leading to more fatigue. A study published in the British Medical Journal in 1996 compared four interventions designed to gradually reduce avoidance of activity: cognitive-behavioral therapy (CBT), graded exercise therapy, adaptive pacing therapy, and standard medical care.
“Patients receiving CBT had the lowest scores on fatigue (standard medical care had the highest) and the highest scores on physical function. ‘Cognitive-behavioral therapy was both acceptable and more effective than medical care alone in improving patients’ day-to-day functioning in the medium term,’ wrote Sharpe and colleagues. ‘It was also more effective in helping patients to feel better.’”
These claims have all been debunked, of course. It’s a shame that Professor Sharpe’s peers have provided him with yet another prestigious platform to push his pile of horse manure. It seems like some people haven’t had a new idea in 30+ years.
Thanks for continuing to try to clean the Augean stables. To bad we can’t use Hercules’ method to do it once and for all. The river of public opinion and media attention is too fickle to do much water blast cleaning – no harnessable power.
It took forever for the establishment to accept H. pylori’s role in stomach ulcers, but that knowledge is now standard; we hope to get to the same state of certainty – your work is crucial.
There was a time when getting an award meant something (good). It might still do at school and university but beyond that I’m sceptical now
and rather inclined to think the reverse.
If the article is accurate, Sharpe’s speech was incredibly disingenuous:
“But the historical separation of psychiatry from the rest of medicine has made that integration challenging, and Sharpe said psychiatry needs to define specifically what it can bring to the care of medically ill patients and prove its value in robust clinical trials.
“As examples, he presented clinical trials focused on three problem areas of medical care: management of chronic fatigue syndrome. . . .”
It thus seems that he now agrees that ME/CFS patients are “medically ill” and that CBT/GET addresses only “management of chronic fatigue syndrome.” In other words, he appears to have silently retracted the PACE claim that CBT/GET “reverses” ME/CFS and that patients can “get back to normal” with his therapies.
If so, those are huge concessions, but he will not come right out and admit it.
I disagree.
Until Sharpe
1) Retracts the PACE study
2) Holds a press conference admitting he is wrong, and the biomedical approach is correct
3) Resigns from his university in disgrace for his mistreatment and maligning of ME/CFS patients
4) Publicly announces who paid him and why
I would not believe or assign to him any thoughts or actions in such a forgiving fashion.
The man is cruel, abusive, unacademic, unscientific, and until he is held accountable by his university and his peers for his unscientific ideas and behaviour, do not believe his BS PR. And even if this all happened- do not believe it then either.
It’s you who concede too much to him- rather than hold him responsible for who and what he is.
Talking of awards, look who’s just got a gong -https://www.gov.uk/government/publications/the-kings-birthday-honours-list-2023 . There are at least 2 people on that list who I think have done far more harm than good. The UK stinks, but I suppose gong farming has always been quite a smelly business. It’s enough to make your stomach churn.
One person I was very happily surprised to see on the honours list mentioned above is ME sufferer and advocate Joan McParland “For services to People with Myalgic Encephalomyelitis and to their Families and Carers in Northern Ireland.” What a complete shock to see someone given a gong for helping people with ME rather than harming them. This is a momentous step in the right direction. Am truly pleased for her.
I appreciate that some very deserving people get to be on the honours list too and would not want to deprive them of the recognition for what they’ve done or achieved….but I can’t respect a system that honours people who have neglected or harmed others and it seems to me that this is done year on year. I’m afraid I don’t see this as a step in the right direction but more like one step forward, two steps back. To my mind, the system should go and its removal is long overdue.
Yes, there have been some undeserved gongs for people who have done harm, thanks to cronyism. There needs to be an uninvolved 3rd-party’s impartial scrutiny of each candidate’s full history both good and ill, rather than blindly accepting ‘old boy network’ bigging-up of each other.
In this case, what is a huge step is that the gong was -specifically- “for services to People with Myalgic Encephalomyelitis”. That has never happened before. It is unprecedented. It sends a wake-up call: “Gosh, people with ME are deserving of help?? Who’da thunk it? Shock Horror!!” etc. It’s a milestone.
Ezzied commented:
“It’s a milestone”.
Not in my book, I’m afraid. I wish it was but it’s ‘same old’ to me.
Diane O’Leary called out Michael Sharpe in this article published in 2020. Good on her:
Diane O’Leary. Med Humanit. 2020 Dec;46(4):e4. doi: 10.1136/medhum-2019-011743. Epub 2020 Jun 29.
A concerning display of medical indifference: reply to ‘Chronic fatigue syndrome and an illness-focused approach to care: controversy, morality and paradox’
Abstract
In ‘Chronic fatigue syndrome and an illness-focused approach to care: controversy, morality and paradox’, authors Michael Sharpe and Monica Greco begin by characterising myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) as illness-without-disease. On that basis they ask why patients reject treatments for illness-without-disease, and they answer with a philosophical idea. Whitehead’s ‘bifurcation of nature’, they suggest, still dominates public and professional thinking, and that conceptual confusion leads patients to reject the treatment they need. A great deal has occurred, however, since Whitehead characterised his culture’s confusions 100 years ago. In our time, I suggest, experience is no longer construed as an invalid second cousin of bodily states in philosophy, in medicine or in the culture at large. More importantly, we must evaluate medical explanations before we reach for philosophical alternatives. The National Institutes of Health and the Institute of Medicine have concluded that ME/CFS is, in fact, a biomedical disease, and all US governmental health organisations now agree. Although it would be productive for Sharpe and Greco to state and support their disagreement with the other side of the disease debate, it is no longer tenable, or safe, to ignore the possibility of disease in patients with ME/CFS, or to recommend that clinicians should do so. When we find ourselves in a framework that suggests the possibility of medical need is somehow beside the point for medical providers, it is time to reconsider our conceptual foundations.
PMID: 32601171 DOI: 10.1136/medhum-2019-011743
Exactly. Sharpe has evidently changed his ME/CFS tune from “illness without disease” to “medically ill,” and from using CBT/GET for “reversal” to “management.” A serious scholar would admit that he had been wrong for decades, but Sharpe disingenuously continues to insist on the validity of his imaginary “vicious circle.”
I suppose one other aspect to note is that of the concept of hope. My understanding is that presently there is no cure for ME/CFS. Medical professionals, at least from my experience, would like nothing better than to provide a cure for their patients regardless of their illness. Some medical professionals provide false hope in certain situations with the thinking they are doing something positive for the patients in light of a non-curable illness. Many medical professionals I’m sure are frustrated with non-curable illness and communicating with patients. Perhaps Michael Sharpe is a practitioner who has some personal issues with the concept of hope in medical care. I don’t know. This is a good read from the oncology literature:
“Both hope and cure have different meanings for individual patients, oncologists, and contexts. Hope is essential for all human beings, including patients and their oncologists. Oncologists should communicate in a way that fosters and sustains realistic hope even in the setting of advanced cancer.”
Source: Belinda E Kiely, Martin R Stockler. When Should Oncologists Use the Words Hope and Cure?JNCI Cancer Spectr. 2020 Aug 14;4(6):pkaa066. doi: 10.1093/jncics/pkaa066. eCollection 2020 Dec. PMID: 33225210
In a previous comment I expressed my view that the awarding of an honour (by the UK honours system) to a well-deserving ME sufferer and advocate was not the ‘milestone’ that another commenter considered it to be. I would like to stress here that I think that many who receive such honours are extremely well-deserving, as I’m sure she is, but in my view the system is tainted by honours being awarded to people who have, through various means, caused harm to others. In this round, I picked out 2 people (who have been given higher honours than that ME advocate) who I believe bear responsibility for harm and distress caused to patients with unexplained symptoms. It’s good, of course, that the advocate’s work and dedication has been publicly recognized but I wish there was some other way that that could have been achieved.