By David Tuller, DrPH
People who know little or nothing about the illness or cluster of illnesses variously called myalgic encephalomyelitis, chronic fatigue syndrome, CFS/ME, and ME/CFS can’t seem to stop writing stupid and ill-informed stories about it. And Professor Michael Sharpe seems to blame “Americans”–rather than his own disastrous research–for his current problems and the reputational damage he has suffered. That’s mainly what I got from articles in The Guardian and Psychology Today that followed one another in quick and dispiriting succession last month.
Both stories were essentially rehashes of the March dung-heap written by Reuters “reporter” Kate Kelland, one of the Science Media Centre’s BFFs in the UK. Right now I’ll focus on the Guardian piece. (It ran on a Sunday, so it was presented as a piece in The Observer, the Guardian’s sister paper.)
The writer, Andrew Anthony, is a long-time contributor who apparently accepts whatever he reads in Reuters at face value. He presents Professor Sharpe as a man at the top of his field, an Oxford don of high principle and integrity, at the inexplicable mercy of irrational, abusive patients. And once again, I am presented as the enabler-in-chief and some sort of Pied Piper of ME, leading patients on a path away from science, reason and the evidence-based benefits of CBT and GET.
The article tries to balance Professor Sharpe’s silly statements by quoting Dr Charles Shepherd, the ME Association’s medical expert. But since Anthony appears to have little awareness of the issues involved or the problems with the trial, he largely adopts the frame presented by Professor Sharpe. As an example, let’s take a look at how the article explains why PACE was controversial:
The trial became the subject of controversy for several reasons. One is that it looked at ways of dealing with the symptoms of an illness rather than exploring a cure for a disease. Another is that it suggested there might be a psychological component to the manner in which sufferers experience the illness. And then finally, question marks were raised over the trial’s methodology.
The last sentence is true. The two that precede it are fantasy—the delusions perpetrated by Professor Sharpe and his colleagues. Did Anthony actually read the trial? The Lancet paper included detailed descriptions of the theoretical basis for the treatments. So it is very, very clear that the investigators did not view themselves as “dealing with the symptoms.” They were specifically treating the deconditioning that they believed was at the heart of the condition and the “unhelpful” beliefs that were presumed to be triggering sedentary behavior leading to that hypothesized deconditioning. I mean, they wrote a whole paper about “recovery” from illness, not about “recovery” just from symptoms of illness. They pronounced 22% of participants in the CBT and GET groups to be free of CFS. It is categorically false to state that PACE was only “dealing with” symptoms.
The second purported reason for the PACE controversy is one that these people routinely trot out–the notion that patients object to the treatments because the treatments imply the illness is psychological or psychiatric in nature. This is untrue. Patients object to the PACE trial because it stinks. It violated multiple methodological and ethical principles of scientific research, whether Professor Sharpe and his colleagues want to acknowledge this or not. I assume Anthony has not done his homework and has not read the open letters to The Lancet or other core documentation of the trial’s failings.
Interestingly and tellingly, the article ignores last summer’s open letter to The Lancet signed by 100+ experts from around the world or Wilshire et al, the BMC Psychology paper that reanalyzed the PACE and refuted all the core findings. (Disclosure: I was a co-author of that paper.) Beyond that, the article does not mention anything further regarding the “question marks” about the trial’s methodology–and especially that it is not only patients and me that have highlighted these “question marks.” In this case, such omissions arguably constitute journalism malpractice.
The statements about me further illustrate the story’s shaky relationship with, you know, reality. That section is preceded by Professor Sharpe’s interesting—and I guess not inaccurate–observation that everything was just fine until “the Americans got involved.” As the story segues to my involvement, Anthony refers to me as “a man called David Tuller”–as if there might be some question as to whether David Tuller is my actual name or only the name that I allow people to call me.
(This naturally brings me back to the American literature survey course I took my freshman year of college. “Call me Ishmael” is the first line of Moby-Dick and among the most famous first lines in American literature. Anyone who reads Moby Dick in a college literature course learns immediately that you have no idea if Ishmael is his name or not. All you know is that’s what he wants people to call him, for whatever reason. So, given that: Call me David Tuller.)
Ok, moving on from whales. Anthony cites me as an example of the “tough kind of activist” bred in the wild environment of the litigious private US health care system. I have no idea how he came up with this perplexing origin story for me. It is also unclear to me what the private US health care system, litigious as it might be, has to do with the fact that PACE participants could be “disabled” and “recovered” simultaneously for physical function or that the PACE investigators rejected the objectivity of their own objective measures. What does the private US health care system have to do with my desire to publicly expose such shenanigans?
And of course, like the fictional account published by Reuters, the Guardian article includes no mention of my doctorate in public health and my academic position at UC Berkeley’s Center for Global Public Health. Instead, my main qualification for my work appears to be that I am a former AIDS activist—a meme also perpetrated by Kelland. I have always been mystified about how my two-year involvement in ACT-UP more than 30 years ago, from 1986 to 1988, is relevant to my critiques of the body of literature revered by the CBT/GET ideological brigades in 2019. Once I moved to San Francisco to become a newspaper reporter, I no longer participated in any activism whatsoever. It was barred by the terms of employment. To raise it now as anything other than a mildly interesting factoid about my past is silly.
Next, the journalist writes this about my strategy: “He takes a highly detailed approach to medical papers, closely reading them to uncover any inconsistencies or potential flaws.” That this appears to be presented as part of the negative critique of my work and impact is confusing Given the context, the story seems to be suggesting that this “highly detailed” approach is problematic. But shouldn’t people be reading medical papers closely to uncover any inconsistencies or potential flaws? Especially since it appears that, in this domain of inquiry, the investigators themselves and reputable journal editors (I’m looking at you, Richard Horton and Fiona Godlee) appear unbothered by any such inconsistencies or potential flaws? This activity is only problematic if your studies, like the PACE trial, can’t withstand that sort of scrutiny.
And he calls me “instrumental” in Cochrane’s decision to withdraw a review of exercise therapies–but then he links not to the currently contested exercise review, which has not been withdrawn, but to the protocol for the individual patient data exercise review, which has been. It is clear from this section that Anthony does not understand that there were two separate Cochrane exercise papers. And the protocol for the individual patient data exercise review was withdrawn under withering criticism from peer-reviewers. To clarify: I have never claimed to have influenced Cochrane over anything. I have only noted that I “pressed hard” when I met with David Tovey, Cochrane’s recently retired editor-in-chief. There is no evidence that my actions have impacted Cochrane in any way at all.
I’m not going to deconstruct the entire article. But I couldn’t let this sentence pass without comment: “Sharpe counters that nowhere in his writing has he ever argued that there is no underlying disease, only that, given the disease has not been identified, the most effective current treatment has to be directed at the symptoms.”
As Professor Sharpe knows very well, the entire CBT/GET paradigm for treatment of ME/CFS is based on the notion that there is no underlying organic illness—just unhelpful illness beliefs that lead people to remain sedentary and become deconditioned. This approach was outlined in 1989 in a seminal article co-authored by Sir Simon Wessely and Professor Trudie Chalder, among others. Professor Sharpe and the rest of the CBT/GET cabal have routinely posited that this deconditioning, and nothing pathophysiological, is causing the symptoms.
It is only since the CBT/GET paradigm has been collapsing under its own absurdity and the PACE trial exposed as fatally flawed that Professor Sharpe and his colleagues are dialing down their previous claims. They are presumably eager to salvage at least a shred of scientific credibility. That Professor Sharpe now seems to be arguing that PACE was only targeting symptoms and that he has never argued against the existence of an underlying disease is ridiculous. He has once again moved the goalposts and is engaged in post-hoc reframing and reinterpretation of the PACE trial. It is unfortunate that The Guardian and its hapless correspondent have provided him with a platform for this dishonest and self-serving maneuver.
Comments
35 responses to “An Ill-Informed Article in The Guardian”
I applaud your patience and perseverance in dealing with this frighteningly powerful gang of charlatans and quacks.
Your work is incredibly important.
“He takes a highly detailed approach to medical papers, closely reading them to uncover any inconsistencies or potential flaws.”
What are you, a third-year Science major or something? Wait, you’re saying JOURNALISTS have a responsibility to read things this carefully?
To read your thoughts about the Guardians bad article were actually really funny. I laughed out loud when I read that your “highly detailed” strategy were problematic.
Dear David, thank you for your support for those affected by this terrible condition.
Your dogged determination in pursuit of the truth in this matter is greatly appreciated.
Those responsible for the criminal treatment dished out to thousands of ME sufferers should be made to face up to their professional incompetence.
Once again thank you.
Welcome back. You will always feel needed!
Anyone who is actually impartial will eventually get it; but they seem rather dimwitted and slow.
I always appreciate your honest, straightforward, and at times humorous, style of writing. You are a treasure. Thank you for grounding us all in reality when it comes to this illness — a refreshing change compared to some of the nonsense put out there.
Please continue your work. We need a rational challenging voice (who always does his homework).
It’s strange what Sharpe said about Americans since you’d think he’d be rather fond of them. As President-Elect of the Academy of Consultation-Liaison Psychiatry ACLP (previously the American Academy of Psychosomatic Medicine APM – renamed in 2017) he must spend a fair proportion of his time consulting and liaising with them. Could he be secretly planning a Great British takeover of that harsh American system? Or perhaps he thinks he can gently persuade the Americans to adopt a soft and fluffy model of healthcare like we have in the UK?
Interesting how Sharpe says in the Guardian article that he never said there was no underlying disease in ME/CFS, yet at the very same time, he has a new paper in BMJ Medical Humanities, “Chronic fatigue syndrome and an illness-focused approach to care: controversy, morality and paradox”, in which he calls it an “illness-without-disease”: https://mh.bmj.com/content/45/2/183.full
From the paper: “for patients with ‘illness-without-disease’ such as CFS, psychological and behavioural therapies for fatigue may not be seen as beneficial.”
Funny that!
Great response. Thank you so much!
Please leave ME out of this discussion. There is no illness or cluster named ‘ME/CFS’. The PACE trial was CFS only.
Thank you for this, David. Your work continues to be greatly appreciated and of great importance.
I am a subscriber to The Guardian and was incredibly disappointed to see this material regurgitated in The Observer. I wrote to the editor but suspect that the Science Media Centre and its friends have more influence over the content than the patient community.
We can of course all see the errors in the piece but for the casual reader it helps to bolster opinions that the biggest problem with ME is in the minds of patients rather than the psychologists who purport to study the condition.
The Guardian really should be writing about the fact that a 17 year old with severe ME is being held against her will at Lewisham hospital. The fact that they are trotting out untruths on behalf of researchers who have been debasing ME treatment for over two decades is really unhelpful.
Perhaps Sharpe forgot to tell Anthony that 4 or more years before the publication of the PACE trial results he was working with US researcher Kurt Kroenke on a 2007 paper entitled “Revising the Classification of Somatoform Disorders: Key Questions and Preliminary Recommendations” – and that Arthur Barksy was included in the CISSD Work-Group that convened in London and Oxford in the UK and in Indianapolis in the US to identify the key questions that are presented in the paper.
[Kroenke, K., Sharpe, M., & Sykes, R. (2007). Revising the classification of somatoform disorders: Key questions and preliminary recommendations. Psychosomatics, 48(4), 277-285. https://doi.org/10.1176/appi.psy.48.4.277%5D
Barksy co-authored this 2005 paper on the costs of ‘somatization’ in the US healthcare system –
Barsky AJ, Orav EJ, Bates DW. Somatization increases medical utilization and costs independent of psychiatric and medical comorbidity. Arch Gen Psychiatry. 2005;62:903–910 .
Despite its stated limitations, this much-cited paper (cited by Sharpe) seems to have been influential both within and outside the US, but then who takes the time to read papers properly and heed their limitations these days?
US and UK alike, it’s about how much money can be cut from physical healthcare by diverting patients to psych care instead.
Sheer hypocrisy from The Guardian and Observer.
Their coverage of HIV/AIDS and ACT-UP activism portrays patients as brave and heroic fighting for their lives against the medical establishment at times.
https://www.theguardian.com/society/2016/nov/29/act-up-aids-new-york-spencer-cox
Change that to people with ME and see the difference.
Sharpe claims to have retired from “CFS” research but he never takes a day off from attacking patients and our advocates. These attacks won’t stop until the Wessely School of psychobabble is held to account in a court of law.
The tobacco industry settlements show that sometimes justice prevails. It is a very slow process, so we better start soon…
For more on the CISSD project (2003 – 2007), that I mentioned in my comment above, see –
[https://www.meassociation.org.uk/2009/06/cissd-project-report-from-dr-richard-sykes/]
Scroll to the end of the article (Appendix B) for a list of those involved and which countries they were from. From the USA, I counted – the Chairman (Kurt Kroenke), 7 “active” consultants (including Barksy) and 7 “advisory” consultants – making a total of 15 of the 44 listed.
So it appears that ‘Americans got involved’ with the debate, and with Sharpe, and a UK patient charity (Action for ME) was also involved in the same project, a significant time before the PACE trial results were published in 2011.
Well worth a read, IMO.
Thank you once again David, for a great reply to the put downs peddled by people, employed by once great newspapers. Your concise taking apart of this and other stuff written about an illness that is seriously affecting so many of us, (thus causing distress to very ill people) is brilliant, you are a knight in shining armour.
It’s true that I call you PACEman. Amazing critique! “David Tuller” at his best. Thank you!!!
It’s pathetic the way the UK papers persist in these baseless slurs against one particular patient group, year on year, decade on decade. Thankfully, they are mostly in decline, and we won’t miss them one bit.
I love you Dr. Tuller! I can sleep easier (for 16+hrs at a time) knowing that we ME/CFS sufferers have you in our corner. You are the MAN. ✊
The PACE trial and its subsequent media campaign, with Michael Sharpe at the helm of all of it, left me feeling powerless and frustrated in ways I had no energy left to describe. Everyone affected by ME knows the feeling. It has meant so much to watch every step of push-back that now has Sharpe back pedaling. Thank you for fighting for us David.
Professor Sharpe’s comment that everything was just fine until “the Americans got involved” is revealing. It shows that Sharpe, White, Wessely, and associates form what Professor John Ioannidis calls an inbred scientific group. Everybody in the group shares research paradigm and common values, and is unwilling to listen to outside criticism or to re-evaluate his/her position in light of new evidence. When this clique of high-profile British scientists was challenged by “Americans”, it was immediately dismissed as an attack by outsiders. The primal response was to close ranks and launch counterattacks—such as the Guardian article. In their fervour to rally against the “outsiders”, they even forgot that they have been challenged by many British and non-Anglo-Saxon scientists as well.
Sten – please read my 3 comments above. Sharpe and colleagues have not been working in isolation in an ‘inbred scientific group’, well not a British one at least. They have been working with Americans, Europeans and others to try to spread their model around the globe. They have been involved with ‘Americans’ for a very long time, which makes it such a ludicrous thing for him to have said.
(He is President-Elect of the US-based Academy of Consultation-Liaison Psychiatry and Vice-President of the European Association of Psychosomatic Medicine).
Couch Turnip: I understand that they have been working with many people outside their own peer group. The point is that Professor Sharpe defends his position with the argument that everything was fine until “the Americans got involved”. That is a tribal attitude and implies that the criticism should be dismissed out of hand because it is put forward by outsiders. It is also telling that—at least as far as I know—no senior researchers in the Oxford school has changed his/her opinion, in spite of the egregious flaws of the PACE trial. That again suggests that they are unwilling to question their own research paradigm.
An inbred scientific group doesn’t mean that group members don’t interact with outsiders, only that they share the same fundamental postulates, bolster each other’s beliefs by repeating bad arguments ad nauseam, are not willing to question the postulates in face of new evidence, and close ranks to defend to their paradigm when challenged by outsiders.
Sten – I think it would be a mistake to regard the Americans and Europeans that Sharpe has interacted with (and continues to interact with) as ‘outsiders’. They are part of his group which is a multinational group and the ACLP (that used to be the APM) considers the EAPM as its ‘strategic partner’ [https://www.clpsychiatry.org/about-aclp/strategic-partners/].
I should add that I suspect the reason that Sharpe brought the ‘Americans’ into it in the way he did, (of course in addition to the link with David Tuller being American), was to appeal to Guardian/Observer readers who would mostly be sympathetic to the view that the US private healthcare system is a harsh environment and not one that is wanted by people on the left of politics in the UK. I suspect it had little to do with what he actually thinks/believes.
Couch Turnip: Professor Ioannidis used the term scientific inbreeding when an interconnected group is able, temporarily at least, to dominate a scientific area and control and contain criticism of flaws consistently characterizing their work. That means that scientific results are reproduced in studies that all have the same flaws. I think that this concept applies to studies of CBT/GET for ME/CFS according to the Oxford model, as all studies are unblinded with primary subjective outcomes and select a heterogeneous group of patients.
In his 2012 paper, Ioannidis wrote: “Some types of seemingly successful replication may foster a spurious notion of increased credibility, if they are performed by the same team and propagate or extend the same errors made by the original discoveries Besides same-team replication, replication by other teams may also succumb to inbreeding, if it cannot fiercely maintain its independence. These patterns include obedient replication and obliged replication.”
I think that the PACE authors have consistently tried to delegitimize criticism as anti-science or harassment of angry patients, in contrast to the legitimate pro-scientific views put forward by the proponents of the PACE paradigm. I take your point that Professor Sharpe appeals to antipathy towards the American health care system, but I think that he also implies that he belongs to a group of experts that represent true science, as opposed to his critics that don’t belong to this group.
Sten: Yes, I’m sure there are elements of that, but the point I’m making is that Sharpe has been involved with an international group of people, including Americans, for a very long time. The PACE trial reported 8 years ago and he has since moved on with his life and has left that seemingly exclusive Oxford/PACE clique behind to an extent, (although he does appear to be still close to them). He’s made the point himself that he’s quit research into ME/CFS, and looking at his research record he appears to have done that some considerable time ago. While the ME community was (quite rightly) protesting about the PACE Trial, the Trial researchers went their separate ways with Michael Sharpe broadening out into studying MUS and now the even broader field of ‘liaison psychiatry’. His current research includes the liaison-psychiatry-based HOME study, where the aim is to reduce the time that elderly people spend in hospital (PLUS THE ASSOCIATED COSTS) by providing them with ‘integrated’ mental health ‘care’. As far as I know, the people he is working with on that do not include the PACE trial researchers. But I’d imagine that he HAS maintained his link with ME and CFS research and researchers through his involvement with the ACLP (APM as was) and the EAPM. To my mind, the ME/CFS management model is the lynchpin of the MUS model that this group of psychosomatic researchers seems intent on rolling out across the globe. I assume that’s why Sharpe is now so vigorously attacking Tuller and defending the PACE Trial when he (Sharpe) is no longer directly involved with ME research. They would have a lot to lose if the PACE trial is retracted, and not just their reputations. Their economic models are based on keeping patients away from biomedical healthcare by giving them cheaper mental healthcare, such as CBT, instead.
Thank you very much for your work, Dr. Tuller.
Thank you for all you do
Thank you, again, David Tuller.
Link to Science Media Centre Governance page (Wesssely))
https://www.sciencemediacentre.org/about-us/governance/
It is really important that we understand exactly what David is up against, and to do so, we need to learn about the background…it runs deep…and Wessely is everywhere in the story, and in agencies in the UK, Wellcome, the SMC and now of course, the ‘Mental Health Tsar’?
Links to two articles by George Monbiot which provide the background to the influence of Wessely and his mates:
https://www.theguardian.com/education/2003/dec/09/highereducation.uk2
https://www.gmwatch.org/en/news/archive/2009/10732-george-monbiot-article-about-sense-about-science
Here is a quote from an article discussing the difference between the Social Model of Disability, which argues for provision of services and structural changes which can give disabled people access to a more normal life-style, and the Biopsychosocial Model which basically blames their disability on ‘false thinking’, and how this model has been used by medical insurers in close alliance with the DWP, to deny support to disabled people. Note that PACE was funded by the DWP. It is thus central to the whole political drive to deprive disabled people of benefits.
https://disability-studies.leeds.ac.uk/wp-content/uploads/sites/40/library/A-Tale-of-two-Models-Leeds1.pdf
‘Rutherford argues: in the 1980s Unum, and insurance companies Provident and Paul Revere were in trouble in the U. S. They had increased profits by sharing similar policies on disability and sickness insurance and selling to professionals. A combination of falling interest rates and the growth of diagnosed illnesses which were not subject to the insurance sector‟s tests appeared to be increasing, affecting the professionals who had taken out policies with the companies, and in turn affecting company profits. These illnesses included: Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS), Fibromyalgia, Chronic Pain, Multiple Sclerosis, Lyme disease.
An aggressive „Chronic Fatigue Syndrome plan followed, with claims being managed in a way that continued to maximise profits. The insurance industry called on the academics, Professor Simon Wessely of King’s College and Professor Michael Sharpe of Edinburgh University (both participants in the Woodstock conference) in an attempt to reclassify those conditions that were costing money, and lobby the medical profession on such conditions so they fell outside the remit of „pay outs‟. It meant that specific illnesses were targeted in order to discredit the legitimacy of claims. This „strategy‟ was to prove useful in dealing with the UK‟s welfare reform and in overriding the basis of medical opinion on a whole set of conditions. As the state joined in the denial with its set of private companies and supporting academics Unum achieved more market returns while disabled people began to see their own welfare support rapidly diminishing.’
This situation is the reason why Sharpe and co have the British establishment, academia, the medical establishment, the mainstream media, and public opinion…and Reuters, obviously, completely in their hands.
I suppose knowing about it is a start…and David is the guy trying to bring some sanity into this mess…but he’s not just up against some editors and some terrible academics…it is much bigger than that…
Couch Turnip and Stem
Yet again, link to my article about MUS…which is not a medical or psychiatric condition and should not even be called that…medically unexplained symptoms are symptoms which require explanation….putting initial caps on that phrase does not thereby create a ‘condition’. MUS is a cynical political strategy to avoid giving sick people medical care…I know you guys know that….it’s just something these psychiatrists are using to maintain their control over the definition of ME/CFS etc as mental health issues…to save the insurers money.
http://www.positivehealth.com/article/cfs-me/medically-unexplained-symptoms-diverting-5-year-funding-from-mental-health
The JCPMH MUS guidance is riddled with inconsistencies and flaws but where can we find an excellent journalist with a penchant for detail to help expose them?
Thank you….ummmm, I think you asked to be called David Tuller 😉
It’s always nice to hear the voice of reason, especially when it counters what we can essentially call “fake news”. Lay people have enough difficulty understanding good science, well presented. Just look at the anti-vaxxers and their denial of the evidence.
To have to wade through what you have called stupid and ill-informed material makes it even harder for them, as they often lack the skills to critically assess the methods, statistical probabilities etc. of the trials from the original articles and trust journalists to give them the bottom line truths.
So I’m glad to see a well grounded, intelligent rebuttal from someone who knows whereof he speaks. I look forward to reading more of your work in the future.
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