By David Tuller, DrPH
A week ago, Britain’s National Institute for Health and Care Excellence published its new, evidence-based guideline for ME/CFS, which recommended against graded exercise therapy and cognitive behavior therapy offered as curative rather than as supportive care. Not surprisingly, this event creates some public relations problems for members of the CBT/GET ideological brigades, who have spent years promoting their dysfunctional beliefs that their favored interventions can cure the illness.
More recently, as protests against these treatments have gained steam, the investigators have tempered their claims without acknowledging that the underlying hypothesis is bogus. The hypothesis posits that patients are possessed by delusions of having an organic illness but are in fact severely deconditioned. The new guideline rejected this construct with its recommendations against any interventions based on these dubious speculations. In other words, this approach no longer has any credible scientific rationale, although the ideological brigades refuse to acknowledge this new and uncomfortable reality.
So what does that mean for, say, King’s College London, which emits a geyser of sub-par work in this field and is home to Professor Trudie Chalder, a lead investigator of the PACE trial? KCL has touted and sometimes flagrantly misrepresented the results of Professor Chalder’s studies. Given that NICE has essentially relegated the CBT/GET treatment paradigm to the dustbin of research history, the university might have to reconsider how it presents key information.
For example, why are there still active pages like this one hosting an article headlined “CBT for chronic fatigue syndrome”? Here’s the sub-head: “Our researchers were among the architects of bespoke talking therapy for chronic fatigue syndrome, which is now one of two treatments recommended in the UK.”
Hm. Not quite accurate at this point. Keep up, KCL!
Beyond the sub-head, the entire content of this page is no longer operative. In the article,, Professor Chalder spouts the same banalities she has spouted for years no matter how much the research base undermines her point. Here’s how she explains things:
“‘People often believe that if they don’t rest, their symptoms will get worse’, says Professor Chalder, ‘yet extended periods of rest can make people feel more tired and unwell by weakening muscles and disturbing the body clock.’
‘We think that what starts the fatigue is not the same thing that perpetuates the symptoms,’ she says. ‘People might initially develop the fatigue as the result of an illness, such as a virus, or after a period of stress. But once triggered, the fatigue is maintained by other factors, including some coping styles.
‘Beliefs and attitudes towards illness are important in many physical and mental conditions. In CFS, fear that exercise or activity may make symptoms worse can hinder recovery and inadvertently perpetuate the symptoms.’”
What she is saying might be true for people with idiopathic fatigue, or fatigue linked to depression or other mental health issues. While smart observers have known for years that this is all bunk when it comes to ME/CFS, NICE has now officially rated the main evidence for the effectiveness of these interventions to be of “very low” or merely “low” quality. (Of course, Professor Chalder and her allies disagree—that is to be expected. They would have every motivation to defend themselves against this resounding and humiliating public repudiation of the work in which they have invested much of their professional lives.)
Then there is what I sometimes think of as “PACE porn’—the knee-jerk praise bestowed on this purportedly definitive study: “Our researchers were involved in the landmark PACE trial, which showed that CBT and GET for CFS were more effective and more cost-effective than adaptive pacing therapy – where people balance rest with activity – or specialist medical treatment. One year, after a course of CBT or GET, a fifth of people had recovered and were able to partake in life without significant fatigue.”
Yeah, right.
For those who have the stomach, here’s the link to the whole article–complete with the photo of the young woman leaning on her academic notebook. I guess they couldn’t find the photo of the young woman glancing wearily upward with the back of her hand against her forehead?
‘
Comments
22 responses to “King’s College London Is Still Hyping “Bespoke” CBT for CFS as “Recommended” in UK”
Most scientists who used to hold to the ‘acid reflux’ theory of stomach ulcers have accepted that over 80% of these ulcers are caused by a bacterium, H. pylori, instead, and can be cured with the appropriate antibiotics.
After YEARS of fighting the correct hypothesis, they have backed down and gone with evidence-based therapy.
I wonder if any of them apologized.
Regardless, if your ‘science’ is proven wrong, and your theories incorrect, there is a time when you accept that you’re wrong, and go with the corrected theories. The psychosocial babble folk missed that boat years ago. Back when their statistics were challenged by statisticians, they might have been able to exit gracefully, even though they would have had to admit to what they had exaggerated beyond any credibility.
I’m hoping their own colleagues will realize that they are tainting themselves, and abandon them, sooner rather than later. Preferably, for their own credibility, BEFORE someone finds treatment and cure.
Because that WILL happen. The amount of research money suddenly available to the huge long-covid (another post-viral syndrome) cohort – and the economic loss of letting them fester – WILL figure out what has gone wrong, and find a way to fix it.
Kings clearly wants to get sued. If they carry on like this that is what will happen, if you don’t follow the guidance and you hurt people they are absolutely getting negligent treatment. They need to change their approach fast or they might find themselves in a lot of trouble really fast.
Unfortunately, David’s claim that ‘NICE has essentially relegated the CBT/GET treatment paradigm to the dustbin of research history’ is wishful thinking.
NICE is only ‘advisory’: https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC4480561/
The bodies with the real power to determine clinical practice in UK healthcare are the ‘Royal Colleges’ (together with the BMA), and they have more or less rejected the new NICE guidance: https://www.rcplondon.ac.uk/news/medical-leaders-sign-joint-statement-response-nice-guidance-mecfs
David also writes: ‘…if your ‘science’ is proven wrong, and your theories incorrect, there is a time when you accept that you’re wrong, and go with the corrected theories. The psychosocial babble folk missed that boat years ago. Back when their statistics were challenged by statisticians, they might have been able to exit gracefully…’
This looks like a false claim that NICE has agreed with the Kingdon et al re-analysis of the PACE trial, which found minimal therapeutic effects after applying a ‘Bonferroni’ statistical correction. The PACE/KCL statistician argued that the use of Bonferroni in this way was inappropriate: https://bmcpsychology.biomedcentral.com/articles/10.1186/s40359-019-0288-x
I can find no evidence that NICE considered this point. ‘Bonferroni’ does not appear in the 1342 pages of ‘comments and responses’ submitted by professional/academic bodies and responded to by NICE, published a week ago: https://www.nice.org.uk/guidance/ng206/history
Instead, NICE appears to have ‘rejected’ PACE on three main grounds. 1. The PACE follow up study, which found no lasting benefit. 2. PACE only provides ‘indirect’ evidence for treatment of Mecfs, because NICE’s new criteria include PEM, and patients assessed by PACE had less than 95% PEM. 3. Survey evidence that CBT and GET are often harmful.
All three of these grounds are based on the ‘judgement, taking account of context’ of this particular NICE committee, and they were all strongly contested by the Royal Colleges and other professional groups. NICE itself appears not to have made any significant claim to be determining ‘the science’ so, again, it is misleading for David to claim this.
The only realistic way for the PACE trial to be seriously undermined is to focus on the ethical flaw of patients not being informed of the lead investigators’ work for insurance companies. https://drnmblog.wordpress.com/2021/03/19/the-pace-trial-should-be-retracted-because-it-was-seriously-unethical-and-the-investigators-continue-to-deny-that/
If David and others were to do that, it would be essential to first properly disclose their own serious conflicts of interest. I hope they do. https://twitter.com/NMacFa/status/1448027220786749444?s=20
There are 1000s of comments on the social media platforms that never make it to the actual comment section on the article that David writes.
Excellent work David thank you!
These guys are dogmatic and bias not dispassionately seeking truth in the name of science as Simon Wessely claims is the goal of research!
Trudie needs some CBT for her negative M.E beliefs.
Not the only clinic clinging on to these treatments, a Bedfordshire clinic has told a pwme that their Graded Exercise Therapy is in line with new NICE state and she should not experience any adverse effects.
I’m hoping that pwme start telling practitioners that they will sue if it does cause adverse effects. It’s medical negligence not following New guidelines.
I’d suggest that they devise a therapy programme for themselves that encompasses both cognitive acceptance and behavioural commitment. That surely shouldn’t be too difficult with the main components already in stock? They’d only have to switch things around a bit (A for B, B for A), and switching and substituting does appear to be in vogue since the publication of the new NICE guideline.
Responding to Dr Neil McFarlane MRCPsych’s comment above:
NICE may be “only ‘advisory’ ” but wasn’t the EU Referendum supposed to be “only ‘advisory’ ” too -https://fullfact.org/europe/was-eu-referendum-advisory/?
But on a more serious note – it’s so incredibly sad that the quality of healthcare for UK ME patients now appears to come down to the medical establishment’s intellectual power games. People are suffering unimaginable pain and distress but it sounds as if hubristic elbowing by medical leaders (who likely have more than a little self-interest in the outcome) might now determine their fate. But then this has always been a game to some, I think, and ignoring patient plight has been par for the course for way too long.
Instead of arguing and nitpicking over the new NICE guideline, isn’t it time that the UK medical establishment said ‘sorry’ to all the ME patients who’ve been harmed over the past 5+ decades?
Symptoms which worsen when the tissues they involve get more active are a cardinal sign of autoimmunity.
Seems ludicrous to me that the CBT brigades did not recognize that a decade or two ago, it is so obvious.
But then, CBT is faith healing masquerading as science for the 21st Century, and if Professor Chalmers et al hadn’t picked up where Mrs. Eddy left off, more effective advocates might have, so I suppose we should be grateful.
‘Chalder’, not Chalmers. Not sure why I have a hard time getting her name straight.
Dr MacFarlane is certain the PACE trial results are solid and no trial participants were harmed by GET and CBT. Surely he will support an independent examination of the trial raw data and the release of *all* of it.
Unless, of course, there is something to hide, like exactly how many participants reported that GET and/or CBT made them worse, in their own words.
I have no college degrees or royal awards, but it is obvious even to me that unblinded treatments plus subjective questionnaires equals highly biased and unreliable results. Why can’t eminent self-important psychiatrists understand that? Does their pay and their prominence depend on *not* understanding basic clinical trial methodology?
It’s extremely rude of Dr MacFarlane to come into Dr Tuller’s salon and crap on the carpet with vague accusations of conflicts of interest. Instead of telling us what facts Dr Tuller has got wrong, Dr MacFarlane engages in personal attacks. Outside of the Royal Colleges and Twitter, that sort of behavior is not very persuasive.
jimells:
You seem to be unaware that I am the first UK psychiatrist to openly criticise the PACE trial. I have called for it to be retracted, and have stated that it is ‘at significant risk of fraud’? See the penultimate link in my previous comment.
It follows that yes, I would support a futher, properly independent, review of PACE.
I don’t agree that ‘unblinded treatments plus subjective questionnaires equals highly biased and unreliable results’. If that were true, then what would be the point of a further review of PACE?
Unfortunately, David and his associates have put forward such arguments, which undermine each other. I suggest that is one reason why they have such little credibility with most mainstream journalists.
The conflict of interest allegations are not ‘vague’. They are that, in his Journal of Health Psychology papers, David failed to declare 1. His blog was hosted by a Columbia University academic. That is highly relevant to papers opposing psychosocial causation in MECFS, because Columbia has multiple Pharma links, and is in fact notorious within psychiatry for its overpromotion of psychiatric drugs. 2. Funding by Kaiser Permanente, a HMO which is notorious for underprovision of psychotherapeutic interventions.
Neither are they in any way a ‘personal attack’. David and others have repeatedly criticised the PACE trialists for their failure to disclose insurance company funding. My allegations are of exactly the same kind.
CT: The UK medical establishment has acknowledged that some patients have been harmed.
I find it interesting that I can find no evidence that any of the UK charities, with whom David is closely associated, have supported any formal complaints made by any patient in the UK.
And my understanding is that thousands of patients received PACE-CBT and GET in the US, before the CDC ended its recommendation. I have been unable to find any reports of litigation, which is understood to be much more readily undertaken in the US than the UK.
Dr MacFarlane wrote: “I don’t agree that ‘unblinded treatments plus subjective questionnaires equals highly biased and unreliable results’. If that were true, then what would be the point of a further review of PACE?”
I’m at a loss for words. Perhaps Professor Edwards will join us to explain human behavior and why clinical trials are routinely double-blinded, especially when subjective endpoints are involved. But he probably has better things to do than explain basic trial methodology to psychiatrists, who should already know this stuff.
The PACE trial still needs to be retracted and its advocates publicly humiliated in order to stop the abuse of ME patients. A thorough investigation may do that, as well as provide a case to prosecute the PACE investigators for fraud.
Dr MacFarlane wrote: “The conflict of interest allegations are not ‘vague’.”
I retract that characterization and replace it with “silly”. Meanwhile, Dr MacFarlane has still failed to inform us which facts Dr Tuller has got wrong.
Neil MacFarlane MRCPsych:
Where exactly has the UK medical establishment acknowledged that some ME patients have been harmed?
Where is their apology for that harm?
If it does admit that patients have been harmed then why is it that UK ME patients continue to be ignored, neglected and gaslighted?
Perhaps ME patients should start legal complaints/ proceedings now? Would you recommend that they do?
Also, on what basis do you write that David is ‘closely associated’ with UK charities?
jimells: NICE appears to have been influenced to some extent by Edwards’ submissions. But it did not accept his submission that ‘subjective measures’ trials of psychosocial interventions (which cannot be blinded to the patient) are ‘uninterpretable’. Search the ‘Comments & Responses’ documents (link above) for ‘Edwards’.
I did not say that David’s ‘facts’ were wrong, in the narrow sense, I said two of his claims were false.
Do follow my blog for further pieces on this!
CT: I am working on a submission which would effectively be an appeal to the Health Research Authority. David was keen on this a few months ago. He wrote: ‘Hi, Neil–I’m glad you’ve called for the retraction of PACE…’ (19th March).
He is no longer keen on this. That suggests to me that he (and others) may even have done a deal with the PACE trialists. I will be publishing evidence that indirectly supports that possibility. Do follow my blog for further pieces on this!
The UK charities, especially the ME Association, have promoted David’s work on their websites and social media. Until very recently, he was an ‘Honorary Fellow’ of DoctorsWithME, which includes the medical advisers of MEA and Action For ME.
Neil MacFarlane MRCPsych:
Can David stop organizations/charities promoting his work or bestowing honours on him?
If an organization gives you an honour does that really make you ‘closely associated’ with them? I’m not sure it does.
Anyway, I was really hoping for answers to my other questions.
Dr MacFarlane wrote: “NICE appears to have been influenced to some extent by Edwards’ submissions.”
Well, yes. That was the point. One hopes they would be influenced by a clinician-researcher who actually developed a successful treatment for Rheumatoid Arthristis using rigorous clinical trial methodology and extensive lab bench work showing why the treatment works.
One also hopes that other researchers whose theories and treatments have been shown repeatedly to be failures and to cause harm would be dismissed and de-funded.
Dr MacFarlane wrote: “[Dr Tuller] may even have done a deal with the PACE trialists. I will be publishing evidence…”
So these comments are just click-bait? At Dr Tuller’s expense. How rude.
Dr MacFarlane, what would be interesting is to see a credible defence of unblinded trials with subjective outcome measures as being an adequate evidence base for clinical practice. Are you aware of one?
I have had 2 bouts of ME/CFS, which left me extremelt faatigued. However, when I had an 80% block in my main artery on the left hand side, I was even more fatigued! When, after a few months, I went for an exercise ECG, I went on an exercise treadmill. The machine went faster and faster and steeper and steeper. After some time, I asked whether that was enough. The nurses said that they were fascinated as had never seen anyone, of my age, so fit. My fitness was the result of regular visits to the gym and I was 76 at the time. I could not even think of doing this with ME/CFS! I believe that I have solved the problem of ME/CFS but cannot get the treatment that I need. If there is any interest, I could tell of my research on the subject over the past 60 years, 30 of which was on ME/CFS.
I am still working on the link between ME/CFS and long COVID. I published my thopughts on COVID-19 and the Herpes simplex virus recently (“Ethniity and the relationship betweenCOVID=19 and the Herpes simpplex viruses. Med Hypotheses, 2021, 146: 110447). I have prepared another paper on the link between the herpes simplex virus, head trauma and Alzheimers.
In his first comment Dr Neil MacFarlane incorrectly attributes a quote to David, and then tries to refute it, at length, as part of a sustained attack on him, his work and ethics. Very strange!
The quote, that begins “…if your science is proven wrong…”.
That appears nowhere in David’s article, but appears in the fourth paragraph down in a previous comment, from Alice Butcher Ehrhardt, PhD. It reads “Regardless, if your science is proven wrong…”
Perhaps Dr MacFarlane would like to correct his error, and apologise to David?
My apologies for my brain-fogged mis-type above.
The second paragraph should of course read:
‘The quote, that begins “…if your science is proven wrong…”, appears nowhere in David’s article, but appears in the fourth paragraph down in a previous comment…’
Neil Mcfarlane seems to be some sort of conspiracy theorist who believes he can read peoples mental intentions.
Does he do cold reading as a sideline.