Trial By Error: Steve Brine’s Troubling Claim in Parliamentary Debate on ME

By David Tuller, DrPH

Update on January 29: I love how patients keep me on my toes. A savvy reader pointed out to me today that even members of the GET/CBT ideological brigades have dropped the notion that attributing symptoms to a physical cause itself leads to a poor prognosis. That was the prevailing outlook some years ago, but since then a number of studies from this group of investigators have acknowledged the fallacy of that position.

That hasn’t made them wary of the idea that “unhelpful” beliefs lead to negative outcomes and that CBT is essential to altering such dysfunctional cognitions. They’ve just focused on other apparently unhelpful beliefs—like patients’ purported fear of activity–that they maintain lead to negative outcomes and need to be changed.

Here are three such studies:

Knoop et al. 2010. The central role of cognitive processes in the perpetuation of chronic fatigue syndrome.

Wiborg et al. 2012. Towards an evidence-based treatment model for cognitive behavioral interventions focusing on chronic fatigue syndrome.

Heins et al. 2013. The process of cognitive behaviour therapy for chronic fatigue syndrome: Which changes in perpetuating cognitions and behaviour are related to a reduction in fatigue?

This raises another question for Professor Chew-Graham. Since she is presumably steeped in this literature, she should have known–even if I didn’t–that her colleagues had already dissected and debunked this issue. Given that, why did she include such outdated information in the RCGP course in 2012, and why was it not removed during either the 2015 and 2018 reviews?

And here’s an over-arching question about this whole mess: Didn’t whoever advised Steve Brine MP to tout METRIC for addressing “misconceptions” about the illness realize that this public claim would lead to a closer look at the course? And that Brine would come off as foolish and clueless to be praising a program that unequivocally reinforces the very treatment paradigm that MPs were in the process of denouncing?

This situation is getting curiouser and curiouser.

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During last Thursday’s historic debate on ME in the House of Commons, it was refreshing to watch one MP after another stand up and slam the PACE trial and the non-evidence-based treatment paradigm promoted for decades by the GET/CBT ideological brigades. It was also interesting to note that no one defended this egregious research or the eminent authorities who have produced it.

Of course, the government–in the person of Steve Brine MP, the Parliamentary Under Secretary of State for Public Health and Primary Care–presented its typical non-responsive response. Perhaps because he has been provided misinformation by proponents of the now-discredited GET/CBT treatment paradigm, Brine was able to offer little of value to his colleagues after their unanimous expression of revulsion at the long history of abuse and neglect perpetrated on patients and their families by the medical profession and its government enablers.

Since I’m not analyzing the overall debate in this blog, here is an account posted by MEAction. Members of the Science For ME forum also discussed the debate here.

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I want to focus on a point Brine made regarding the importance of including updated information about ME in medical education—one of the key planks in the motion passed by unanimous voice vote on Thursday. In suggesting that there are currently such resources available, Brine cited a training program developed by the Royal College of General Practitioners.

Here’s what he said: “The RCGP has also produced an online course on ME for GPs. It highlights many of the common misconceptions, and considers the challenges for primary care professionals that surround this complex condition.”

This statement is taken almost word-for-word from the course itself, so it is perhaps unfair to take it as an endorsement. But even a cursory perusal of this particular program, called METRIC (ME: Education, Training and Resources In primary Care) makes it immediately clear that it is an unequivocal piece of biopsychosocial garbage–much worse than nothing. Based directly on the FINE and PACE trials, it transmits their unscientific claims without any hesitation or caution–in effect perpetuating rather than clearing up the “misconceptions” about the illness.

Here is the description:

“This online course provides GPs and other primary care practitioners with an overview of the presentation, diagnosis, assessment and ongoing management of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).

It highlights common misconceptions about CFS/ME and considers the challenges that surround this complex condition for patients, carers and primary care professionals.

This course was developed as part of the METRIC study, funded by the National Institute for Health Research (NIHR) Research for Patient Benefit programme, which aims to improve the care of adults with CFS/ME based on the biopsychosocial model and focuses on the deconditioning theory. It provides resources for patients and education for primary care professionals.”

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METRIC was written in 2012–that is, before it was clear to most people, other than patients and advocates, that PACE was not only a sham but a likely example of research misconduct and that deconditioning had nothing to do with the illness. Most disturbingly, this program was reviewed in April of last year—long after the international community had expressed its dismay at the methodological and ethical violations committed by the PACE investigators. So Brine might want to think twice next time before citing this propaganda as an example of acceptable medical education.

Needless to say, those associated with this training program are card-carrying members of the GET/CBT ideological brigades. The lead author is Carolyn Chew-Graham, a professor of general practice research and the director of clinical academic training at Keele University. Not only does she endorse wholeheartedly this discredited treatment paradigm, she is also a leading proponent of the dangerous movement to psycho-pathologize patients who present with so-called “medically unexplained symptoms,” or MUS. In the UK, this phenomenon is why patients with ME are currently being railroaded into mental health treatment through the ongoing expansion of the program known as Improving Access to Psychological Therapies, or IAPT.

(More later on Professor Chew-Graham’s erroneous claims about the cost of MUS to the NHS.)

In METRIC, Professor Chew-Graham misrepresents the findings from both FINE and PACE. She was in fact a co-author of the FINE trial, along with others on the METRIC team. Let’s remember that FINE produced null results for both of its primary outcomes–fatigue and physical function at follow-up one year after treatment. Nevertheless, METRIC has declared that “this project builds on our previous work–the MRC funded FINE Trail.” Why would the RCGP, or anyone, decide to anchor a training module in such a failed approach?

Well, in the case of FINE, METRIC cites post-hoc, non-peer-reviewed findings to justify the claim that pragmatic rehabilitation reduced fatigue levels in participants–without mentioning that the findings are post-hoc and not peer-reviewed. For PACE, she fails to point out that the reanalyses based on the original raw data and the protocol-promised assessment methods have shredded the findings of the published PACE papers. Since I have spent the years between 2015 and now explaining over and over and over again why this body of research stinks, I would have found the decision to ignore the massive ongoing changes in attitude toward the GET/CBT paradigm shocking if it weren’t so predictable.

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Let’s review this purported “medical” education in more detail.

Here’s how Professor Chew-Graham describes the FINE findings: “Compared with treatment as usual by the GP, pragmatic rehabilitation improved fatigue, sleep and depression by the end of the treatment period, with the effect on fatigue persisting to one year of follow up.”

Of course, this was NOT the reported finding from the FINE trial published in BMJ. On the contrary, the trial had null results for both of its primary outcomes–fatigue and physical function–at the one-year follow-up period. However, a post-hoc reanalysis of the fatigue data using a different scoring method did find modest benefits in fatigue at that assessment. It must be stressed that these findings were never peer-reviewed but published online as part of post-publication, rapid-response correspondence.

It is unacceptable for Professor Chew-Graham to cite post-hoc, non-peer-reviewed findings as if they represented the actual published, peer-reviewed, protocol-promised results of the study. To include such results at all would already be problematic, given that they contradict the peer-reviewed reported findings–which are not mentioned in METRIC. To highlight these results without making their questionable provenance very, very clear is highly deceptive—although it isn’t, in the end, very surprising, considering the persistent pattern of fuzzy reasoning and irrational argumentation that mars the research and statements of this cohort of investigators.

In their desperate efforts to salvage something actionable from FINE, the GET/CBT ideological brigades have repeatedly cited these post-hoc findings without qualification—such as in the most recent Cochrane exercise review. Yet as a professor of “general practice research,” Professor Chew-Graham surely knows that such inaccurate citations are inappropriate–or if she doesn’t, then she should.

And here is what METRIC claims about PACE:

“The PACE Trial (White P et al., 2011) provides convincing evidence that Graded Exercise Therapy (GET) and Cognitive Behavioural Therapy (CBT) are safe and effective therapies.
Adaptive Pacing Therapy (APT) has not been shown to be effective as delivered within the PACE Trial, but this may differ from activity strategies promoted by CFS/ME services nationally. This trial shows that approaches aimed at staying within limits imposed by the illness are less effective than those that test or extend such limits…This trial has also shown that people with CFS/ME who had support from specialist therapists to gradually increase their activity levels were more likely to report improvements in function and symptoms at the end of the year-long study.”

This would be laughable if it weren’t so worrying. Remember, this content was supposedly reviewed last April—a month after publication of Wilshire et al, which authoritatively documented that the reported PACE findings were the result of data manipulation and outcome-switcing. (Disclosure: I was one of the seven co-authors of that paper.) It is dismaying that Professor Chew-Graham has not updated this section to address the changes that have occurred since…well, frankly, since I published my initial Trial By Error series and began orchestrating open letters that highlighted PACE’s singular flaws and were signed by dozens of prominent scientists and other experts.

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Under the heading “The Dysregulation Hypothesis,” METRIC includes these pearls of wisdom:

“Patients can find themselves in a vicious cycle. Excessive rest in healthy individuals can have the following effects:

Cardiovascular deconditioning
Reduced exercise tolerance
Muscle pain (may be delayed) on activity
Weakness, dizziness, postural hypotension
Changes to body temperature regulation
Loss of concentration and motivation”

This is undoubtedly true. But the underlying implication is that the illness in question is due to “excessive rest” and the individuals are otherwise “healthy.” Of course, there is no legitimate evidence to back this claim about ME patients. So why is Professor Chew-Graham presenting information about the “vicious cycle” she claims afflicts healthy people? What does that have to do with ME, except in the minds of the GET/CBT ideological brigades?

Moreover, in discussing the “model for CFS/ME,” Professor Chew-Graham not surprisingly cites leading biopsychosocial myths, such as the suggestion that patients’ belief in a physical cause for their illness is itself leading to negative outcomes. (Research does show an association between belief in a physical cause and poorer prognosis, but the assertion that the first causes the second is unwarranted; the logical explanation is that those patients have worse outcomes because they have a realistic and correct understanding that their illness is physical. In short, Professor Chew-Graham, like her colleagues in this field, interprets the available data backwards–and incorrectly.)

It is disheartening to see such nonsense still being propagated, much less praised and endorsed by the government in parliamentary debate. Here are some other problematic statements in this section of METRIC:

“belief that symptoms are indicative of damage or impending relapse leads patients to stop doing things”
“fear driven avoidance of activity”
“significant others may inadvertently reinforce unhelpful beliefs and behaviors”

METRIC also includes a video from Professor Alison Wearden, lead investigator of FINE, about patients’ “erroneous health beliefs.” Let’s remember that, as I reported in a lengthy analysis of FINE more than three years ago, the trial website included a presentation comparing the illness to “very severe jetlag.” After explaining how and why pragmatic rehabilitation led to physical improvement, the presentation offered this hopeful message, in boldface: “There is no disease–you have a right to full health. This is a good news diagnosis. Carefully built up exercise can reverse the condition. Go for 100% recovery.”

The PACE authors themselves chose to ignore FINE’s null results, failing to mention them in the text of the 2011 Lancet paper, despite claiming for years that Wearden’s study was PACE’s “sister trial.” Yet Brine has now presented treatments anchored in the FINE notion that “there is no disease” other than something comparable to “very severe jetlag” to be appropriate for these desperately ill patients in 2019.

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Another document from 2012–the RCGP’s response to a government report on patient autonomy and the importance of shared decision-making in clinical care–provides some insight into the organization’s mind-set. It could help explain the irrational attachment to a program promoting debunked treatments, like METRIC.

Overall, this RCGP document endorses the shared decision-making concept. But there are exceptions–among them when the patient has illnesses referred to by the RCGP as “complex psychological problems, such as Chronic Fatigue Syndrome”:

“We would take issue with Paragraph 5.18–the statement that patients who had a choice of therapy were more content than those who wanted a choice but did not receive it is so obvious as to not need stating. Further, they were more content with their therapy–but what were the clinical outcomes? And what of patients with complex psychological problems, such as Chronic Fatigue Syndrome, where a choice of treatment might do more harm than good?”

In other words, the RCGP clearly views ME as a psychiatric or psychological disorder. And the organization singles out people with the illness at the core of METRIC–and last week’s parliamentary debate–as potentially too disturbed or irrational to make their own treatment choices. The apparent justification for suggesting that they might not warrant this fundamental right is that the RCGP has determined that their “choice of treatment” could be harmful to their health. Does Brine share this view of ME patients? [Paragraph edited after posting; see original paragraph at end of post.]

Since these misguided opinions appear to be the declared position of the professional group that developed METRIC, Brine should reconsider his decision to repeat the RCGP claims that the program addresses “misconceptions” about the illness. On the contrary, METRIC reinforces the misbegotten delusions that have caused such harm for this population.

If the RCGP does not believe that these patients should be able to decide for themselves what strategies to pursue, it is understandable that its members tend to accuse those who reject its treatments as being hysterical and anti-science–rather than acknowledging that the treatments themselves are not based on legitimate research but on biased studies that violate core principles of academic inquiry. This sort of attitude also likely explains why health professionals might decide to call in child protective services when parents seeking to protect their kids from harm refuse to let them undergo these possibly dangerous treatments.

In short, Professor Chew-Graham and METRIC are presenting “fake news”—in the words of my current president–as the real thing. Anyone involved in developing and promoting this terrible program has a lot of explaining to do. Rather than being hailed by Brine MP or anyone, METRIC should be withdrawn immediately.

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Edited paragraph before editing: “In other words, the RCGP clearly views ME as a psychiatric or psychological disorder. And the organization singles out people with the illness at the core of METRIC–and last week’s parliamentary debate–as too disturbed or irrational to be allowed to make their own treatment choices. The apparent justification for depriving them of this fundamental right is that the RCGP has determined that to grant it would be harmful to their health. Does Brine share this view of ME patients?”

{ 20 comments… add one }
  • Couch Turnip 28 January 2019, 2:24 pm

    “too disturbed or irrational to be allowed to make their own treatment choices” – This reminds me of an IAPT evaluation document where it indicates that,while self-referral is promoted for other IAPT patients, those with LTC (long term conditions) and MUS (medically unexplained symptoms) – so including ME/CFS patients – will likely need to have their problem defined for them by ‘clinical experts’ who will refer them to IAPT instead. Why? Because apparently they are prone to somatization and avoidance and/or may be in denial and lacking the self-awareness to take care of themselves. Sounds kind of the same, doesn’t it?

  • Simon Ellis 28 January 2019, 2:59 pm

    This is spot on! I’ve been struggling with health problems since a viral infection in 2010 caused damage to my heart requiring a mechanical aortic value to replace the damaged valve. I’ve undertaken every possible test on my heart and the cardiologist has assured me the operation has sorted the problem.

    However, I’ve been struggling ever since the virus, but because of the heart issue I was only diagnosed with CFS/ME in 2017.

    The biggest problem I’ve faced since then is that I developed depression and all the treatment I’ve been offered has been to alleviate the depression or GET.

    CFS/ME has stopped me working, (I was an airfield operations manager) stopped me playing sport, (I used to fence 4 or 5 times a week, coached the local junior club & ran half marathons) and destroyed my social life.

    But they don’t seem able to accept that I have a physical issue and the depression is a result of, not the cause of my problems and continue to push GET as a treatment, but I’ve only ever found it to be counterproductive and making my symptoms worse.

  • Alicia Butcher Ehrhardt 28 January 2019, 3:36 pm

    So easy to just lie your way out of things, isn’t it? By the time someone follows up, you’re long gone. Shame on him. For ignorance and for abuse of authority, as well.

  • Samuel Eglington 28 January 2019, 3:36 pm

    I probably don’t need to tell you but since it isn’t in the blog. Simon Wessely’s wife Claire Geralda was head of the Royal College of GPs for a time. Quite probably when this was produced.

  • Alan Gillott 28 January 2019, 3:42 pm

    A not insignificant number of individuals I know personally who are struggling with ME/CF exhibit the symptoms of chronic Lyme disease which is extraordinarily difficult to diagnose by any specific test and doctors have been actively discouraged from treating such patients even though their symptoms and their response to treatment is positive (for example an herxheimer of extreme fatigue after antibiotic treatment is a key smoking gun). Persistently low vitamin C levels is another. These along with other key and obvious responses are enough in some countries to trigger an aggressive treatment for Lyme which is generally successful. Whilst it is invidious to blame Lyme for all ME patients, it is reasonable to suggest that the lack of severe winters which usually provides an annual kill of Lyme is going to lead to an increase of infections; and as the primary symptoms are often missed (not everyone gets the bulls eye rash or cat scratch fever,) there will be an invidious increase in chronic Lyme and consequently ME patients. [As an aside Lyme which is a treponeme, and probably a precursor to syphilis, it follows many of the pathways and can lead to a number of neurological symptoms too.]
    It is not clear where the official blind spot has been mandated, is it the DoHealth trying to save money or ME practitioners trying to hang on to patients or some subtle interaction of the two?
    While accepting Chronic Lyme as a real condition may be in the short term expensive in the long run it can reduce the demand for MS, Parkinsons, Hodgkinsons and, of course, ME clinics. It has always been a source of amazement that the UK medical community has been so dismissive of chronic Lyme when the medical communities of The US and Germany are very convinced of its real impact.

  • Jo 28 January 2019, 5:46 pm

    Reading that & some of the comments just makes me feel sick. Reading that Wessleys Wife was involved in royal college of gps. This evil web creeps further than we knew. It’s like a horror story that never ends. They have got in everywhere. Hopefully the govt debate will provide us with the super hero’s we need to fight the evil.

  • Steve Boyle 28 January 2019, 7:30 pm

    The problem of nomenclature for the illness is amply demonstrated here; the BPS use various terms and to counter/comment on what they write, there is little option but to also use those same terms. The sooner the illness is known only as ME, the better for sufferers; I’m aware that it many not be considered to be 100% accurate in strictly scientific terms, but it has been around for so long, it no longer matters. It wouldn’t cross your mind, for instance, as to whether ‘Parkinsons’ or ‘Addisons’ accurately describe those illnesses. I’ve always been of the opinion that using different terms for ME is a deliberate strategy to muddy the waters and enable the use in studies of patients who do not even have ME, so that the parameters can be stretched as widely as possible. Nowadays, we see studies just referring to “chronic fatigue” – you might as well stand on a street corner and pull into a study anyone who admits to being a bit tired now and then. No criticism at all is directed at David Tuller for also using different terms for ME; we all have to do it to make our voices heard, because this unhelpful variety of labels is what is in current usage.

  • Justin Reilly 28 January 2019, 8:10 pm

    Thank you for another excellent piece!

  • Valentijn 29 January 2019, 4:04 am

    This document (2012) was indeed produced during Lady Wessely’s tenure running the RCGP (2010-2013). Based on that document and all the other BS coming from that group, apparently she thought their policy needed to move in the direction of supporting quackery and abusing ME patients more.

    Also, I disagree with David Tuller’s conclusion that the document is primary in favor of patient choice – keep in mind that they are speaking British, so are not being very direct in disagreeing. But they’re explicitly opposed to a “greater range of providers” (who would presumably offer more choices). They also want to expressly limit the options of patients by being the determiners of what is clinically appropriate, especially in the case of whatever they label as a mental illness. They directly reject “patient choice” and insist that GP’s basically have veto power – and the suggestion of therapy for people who presumably don’t make the right choice, which may be the pathologization of disagreeing with a GP. Allowing the switching providers is also discouraged, with no reason given – presumably because it lessens the control of GPs over patients who disagree with them.

    And then it gets into it being too difficult to explain everything, and patients being too stupid to make informed decisions even after their ignorance has been appropriately dispelled by the doctor. Hiring more doctors to spend time convincing patients to do what they’re told after an explanation will be much more costly than simply telling the patient what to do. And of course, if the patient still disagrees and wants a stupid treatment (like something other than torture?), a train negotiator will need to brought in to get the patient to accept the torture by adding some vitamins on the side perhaps. Then they go on to warn that GPs who are not heeded will have their feelings hurt and neglect the patient, resulting in poorer outcomes.

    The rest is just examples of why patient should be limited, in their exalted opinions. CFS is not being targeted for special treatment in denying choice – it is merely being used as an example for why choice should be denied to patients in general.

  • Couch Turnip 29 January 2019, 4:25 am

    In response to Valentijn’s last sentence, I think they are doing both. They have built their psych model on ME/CFS patients, they HAVE targeted them, but now they are extrapolating it and rolling it out to everyone else.

  • r. wijbenga 29 January 2019, 5:02 am

    disheartening indeed.. sigh

  • jimells 29 January 2019, 12:06 pm

    Steve Boyle wrote: “using different terms for ME is a deliberate strategy to muddy the waters”.

    Yes, there certainly is a deliberate strategy to create confusion and chaos, with more than *twenty* names and definitions. Is there even one other illness with so many criteria? Disability insurers and government agencies exploit the confusion in order to deny benefits or limit them to two years as a “mental illness”.

    Why do insurers limit mental health benefits to two years? Because they can. It’s as simple as that: a pure naked power play regardless of the harm. And because “Useless Eaters” should stop being “a burden on society” and kill themselves.

    The message our “Dear Leaders” are pounding into us every day is that everyone, well and sick alike, is as disposable as dandruff: “We know what’s best for you. Do what you are told or be cast aside.” They no longer even bother to dress it up with appeals to patriotism or sacrifice “for the Homeland”.

    The Wessely School are knowingly harming us on behalf of their insurance industry paymasters. These obvious conflicts of interest are not speculation; instead they are very well documented even to the point of being part of a UK Parliamentary Inquiry known as the Gibson Enquiry. [1]

    In other times and circumstances this would be understood as an obvious criminal conspiracy. Ambitious state attorneys general would be all over it. The tobacco industry conspiracy to hide the addictive nature of nicotine comes to mind. They owned Congress but sometimes the US and UK courts are still independent.

    Perhaps the difference is that the tobacco companies, while wealthy and powerful, are not at the top of the hierarchy. Compare that to the insurance companies and their fellow parasites in the FIRE sector (Finance, Insurance, Real Estate), who have muscled their way to the top of the power pyramid.

    In going up against the insurers and all their puppets we are going up against the very “Masters of the Universe”. It will be a hard pull all the way. But what choice do we have?

    [1] http://erythos.com/gibsonenquiry/Report.html

    p.s. please pardon me for the painful reminder that the current US President is a billionaire real estate parasite and the UK Prime Minister is married to an investment banker.

  • Yvonne 30 January 2019, 5:00 am

    Thank you David for your scrutiny of the minister’s response to the debate. This revelation is appalling. While the use of evidence based medicine is expanding, ME is stuck with this delusion based medicine.

  • Jane Smith 30 January 2019, 6:43 am

    You nailed it with an observation of their backwards thinking. They only see the people after illness has set in and label them as ‘fearful of activity’ or worse. Tosh! These people were runners, skiers, dancers, rock climbers, doing degrees, school, working. Some were even Doctors themselves. They all desperately want to get back to it. All try only to be knocked back with symptom flares. Some by careful personal management and lots of domestic support do show some improvement but it has to be controlled by the person to their highly fluctuating daily capacity. This refusal to hear the patients telling them that these therapies as administered aren’t working is shocking. And the idea that those of us who support pwME are enabling their illness is absurd and insulting.

  • Richard Smallfield 30 January 2019, 1:53 pm

    ‘…Loss of concentration and motivation”…. This is undoubtedly true.’

    Loss of concentration, yes. Loss of motivation, no.

  • Findlow 1 February 2019, 11:13 am

    Has anyone else noticed that on the opening description of the METRIC course the words (as quoted above):
    “……..based on the biopsychosocial model and focuses on the deconditioning theory. It provides resources for patients and education for primary care professionals.”

    are replaced with:

    “……..by developing information and resources for patients and education for primary care professionals”.
    http://elearning.rcgp.org.uk/course/info.php?id=93

    Make of that what you will!

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