Psychology Today blog - The Dark Side of Social Media Activism in Science, 2019, S. Camarata

Andy · Jul 23, 2019

Moved from this thread

Thought this was posted here already but I can't find it.

So why are Dr. Sharpe and other clinical-translation researchers seeking to discover treatments to reduce the debilitating symptoms of CFS/ME being harassed and bullied? The leaders of the social activism movement, aimed at Dr. Sharpe, claim that studying the effects of “psychological” approaches to CFS/ME such as cognitive behavior therapy, behavioral interventions, and exercise imply that CFS/ME is psychosomatic and therefore not a real medical condition. They also argue that psychological approaches to treatment blame the patient and deflect discovery efforts away from the real biomedical/neurological cause(s) of CFS/ME[3].

Both of these premises are misguided and reflect a fundamental misunderstanding of how clinical translation research is conducted—and that beneficial treatments can be developed even when a biomedical “cause” has not yet been discovered. Indeed, the search for effective treatments can often lead to the discovery of causal mechanisms.

I recently interviewed a chronic fatigue patient who also happens to be a prominent family physician in his local community. When asked whether studies showing cognitive-behavior therapy and exercise can be effective treatments for CFS/ME means it is “all in his head” and not a “real medical condition,” he scoffed and replied that there are many well-accepted medical diagnoses wherein the precise mechanisms in the brain are unknown. He also reported that the symptoms of his own CFS were much improved with exercise, so he directly benefited from Dr. Sharpe’s research.
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www.psychologytoday.com/us/blog/the-intuitive-parent/201907/the-dark-side-social-media-activism-in-science

The reference in the quote is to the Reuters article.

chrisb · Jul 23, 2019

That was a major research effort. How long does it take to read Kate Kelland's article uncritically?

Jonathan Edwards · Jul 23, 2019

I have posted a comment that seems to have gone up - but I guess might be taken down!

Sly Saint · Jul 23, 2019

Jonathan Edwards said: ↑

I have posted a comment that seems to have gone up - but I guess might be taken down!
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Superb.
Just in case

Ill-informed comment
Submitted by Jonathan Edwards on July 23, 2019 - 6:28am
I am a professor of medicine in the Department of Medicine at University College London and have been asked by the UK NICE ME/CFS guidelines chair to provide an expert witness testimony on problems with trials in ME/CFS. I have no competing interest and am involved in ME/CFS simply as someone asked to advise on research quality. The article misrepresents the criticism of the PACE trial and associated work. The problem with PACE is that as an unblinded trial with subjective endpoints it is essentially valueless. The Wilshire critique is excellent and has in no sense been refuted (I cannot quite think what grounds there would be for beginning to refute it).
My view is not atypical. At a show of hands poll at the UCL Department of Medicine Grand Rounds all but one (of 80) agreed that trials of this sort are unreliable and unsatisfactory. The one exception abstained wanting more information. I provided that information with a Round of my own asking for further input from colleagues to inform my submission to NICE. As far as I could judge everyone was in agreement with my analysis and the abstainer now exhorted me to make my case strongly to NICE.
Apart from the basic structural problem PACE also suffers from a number of other methodological flaws. Moreover, if you do not truncate the Y axis for the outcome, as was done in the Lancet, you can see that even if the effects were real they were trivial.
The clinical psychology profession needs to recognise that trials of this sort are of no value. When I submitted an invited commentary on these trials I was asked by a referee to remove comments about lack of blinding because they would case doubt on other trials! It sounds as if there is a major problem here.
The activism here is not the dark side. It is shedding much needed light.
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Trish · Jul 23, 2019

Jonathan Edwards said: ↑

I have posted a comment that seems to have gone up - but I guess might be taken down!
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Thank you. Excellent comment. I didn't see it until after I'd written a comment too.
Here's mine, in case it gets taken down.

The dark side of... bad science
I am surprised that Psychology Today has published such a poorly researched article. It is indicative of just how poorly researched that the references are all old, off topic or journalistic hype. Where is the science?

Chronic Fatigue Syndrome, now usually referred to as ME/CFS, has been poorly served by very low quality psychological research. The PACE trial, on which Prof. Sharpe was one of the lead researchers is so flawed as to be useless. Peer reviewed research has shown it to be so, and a letter signed by over 100 leading scientists has asked the LANCET to review their publication of the main trial paper.

For example, they changed the protocol approved criteria for improvement and recovery so that on some criteria a patient could be classed as sick enough to enter the trial while at the same time 'recovered'. No trial making such a nonsensical claim should have been published. There are other faults so bad it is now taught in at least one University as an example of how not to do a clinical trial. The most egregious fault is the use of subjective outcome measures in an open label trial, particularly one in which the 'treatment' involves persuading patients to interpret their symptoms differently, and in which patients on the active treatment arms are told this, and furthermore that the treatments have been shown to be effective. Trials that are not blinded need to use objective outcome measures to be credible.

The recognised cardinal symptom of ME/CFS is not just 'fatigue' but Post Exertional Malaise (PEM), a significant worsening of all symptoms, including pain, cognitive dysfunction, flu like symptoms and severe debility that occurs, often the next day and lasting for days or weeks, following what a healthy person would class as normal levels of activity.

Objections to Prof Sharpe and his colleagues' claims (that CBT and graded exercise therapy are effective) are made on the basis that increasing activity outside that individual's current energy 'envelope', far from improving health, actually makes the patient sicker, sometimes permanently. Patients with ME/CFS are harmed by being told to exercise.

Dr Sharpe and his colleagues have muddied the waters by conflating ME/CFS with the single symptom 'chronic fatigue'. I am glad for the individual described in the article who suffered from 'chronic fatigue' that they were helped by exercise. But by definition, someone who is helped by exercise does not have ME/CFS, since part of the definition of ME/CFS is PEM - worsening on exercise.

The criticism of Prof Sharpe and his colleagues' work on CFS is not on the basis of beliefs about cause, nor are these criticisms made only by patients. Scientists around the world are critical of it on the basis of bad science. People with ME are not anti-psychiatry, they are sick people who have been harmed by exercise based therapies. The treatments do not work. The two largest trials of these treatments, the PACE and FINE trials, both showed transient, slight and not clinically significant improvements on subjective measures. The difference between treatment groups and control groups on both trials had vanished by follow up. The treatments did not work.
I would respectfully ask Dr Kamarata to open his eyes and read more widely on the topic. As a starting point I refer him to the reference list below.

References:
1.Sense About Science USA. Editorial: On PACE.
2.Journal of Health Psychology Special issue on the PACE Trial
Note particularly the editorial by David Marks, and articles by Prof Jonathan Edwards and Dr Keith Geraghty.
3.Psychology in Crisis, by Professor Brian Hughes, 2018, Palgrave MacMillan, Chapter 6.
4. Dr David Tuller's research and open letters with multiple signotories posted on the science blog: Virology blog.
5. Rethinking the treatment of chronic fatigue syndrome—A reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT, BMC Psychology. 2018;6:6. Wilshire et al.
6. Cognitive behavioural therapy for ME/chronic fatigue syndrome is not effective. Re-analysis of a Cochrane review, 2019, Vink & Vink-Niese, Health Psychology Open.
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James Morris-Lent · Jul 23, 2019

The psychology behind the writing of this latest piece seems the same as when any Joe becomes riled up enough to write some misbegotten diatribe after being duped by a Facebook fake news article.

The author worries about the seething masses on social media when he himself appears to be operating from the same sort of prejudicial tribalistic pique that he imagines motivates these straw men.

This sort of goonishness is one of the most effective ways to erode public trust in scientific institutions and empower brazen bullishitters on the outside and inside of those institutions.

Jonathan Edwards · Jul 23, 2019

James Morris-Lent said: ↑

This sort of goonishness
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I think that is a little unfair on Peter Sellars, Spike Milligan and Harry Secombe.

James Morris-Lent · Jul 23, 2019

Jonathan Edwards said: ↑

I think that is a little unfair on Peter Sellars, Spike Milligan and Harry Secombe.
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Whoever they are, I'm sure they don't deserve to implicated!

Jonathan Edwards · Jul 23, 2019

James Morris-Lent said: ↑

Whoever they are, I'm sure they don't deserve to implicated!
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Blasphemy

MSEsperanza · Jul 23, 2019

James Morris-Lent said: ↑

Whoever they are, I'm sure they don't deserve to implicated!
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https://en.wikipedia.org/wiki/The_Goon_Show

Trish · Jul 23, 2019

Excellent comment by @Michiel Tack.

Misrepresentation of criticism
It should be noted that not only patients have questioned the research into graded exercise therapy (GET) and cognitive behavior therapy (CBT). Researchers have done so as well including psychologists such as Caroline Wilshere, James Coyne, Leonard Jason, and Ellen Goudsmit. It would be difficult to argue that these psychologists have a bias against psychological treatments.

It seems more likely that they oppose this type of research because of its methodological faults. Studies into GET and CBT are not blinded, inadequately controlled and focus on subjective outcomes. [1] Reported improvements are often not sustained at follow-up and are not supported by objective measures such as exercise tests, work resumption, actigraphy, or exercise tests. [2]

A reanalysis of the largest study, the PACE-trial, showed that the authors had inflated recovery rates threefold. [3] A letter asking to address these issues has been signed by 100 ME/CFS experts, including prominent researchers in the field, members of Parliament and just about every ME/CFS patient organization worldwide. [4]

Clearly, this is about more than “antiscience” activism on social media. I’m afraid Stephen Camarata is mostly unaware of the discussion he just got himself involved in.

References

[1] Ahmed SA, Mewes JC, Vrijhoef H. Assessment of the scientific rigour of randomized controlled trials on the effectiveness of cognitive behavioural therapy and graded exercise therapy for patients with myalgic encephalomyelitis/chronic fatigue syndrome: A systematic review. J Health Psychol. 2019 May 10:1359105319847261.

[2] Vink M, Vink-Niese A. Graded exercise therapy for myalgic encephalomyelitis/chronic fatigue syndrome is not effective and unsafe. Re-analysis of a Cochrane review. Health Psychol Open. 2018 Oct 8;5(2):2055102918805187.

[3] Wilshire CE, Kindlon T, Courtney R, Matthees A, Tuller D, Geraghty K, et al. Rethinking the treatment of chronic fatigue syndrome-a reanalysis and evaluation of findings from a recent major trial of graded exercise and CBT. BMC Psychol. 2018 Mar 22;6(1):6.

[4] Tuller D. Trial By Error: Open Letter to The Lancet, version 3.0. Virology Blog. 13 august, 2018.
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Mithriel · Jul 23, 2019

Excellent comment from you too Trish. So glad we have such articulate people explaining our problems to the wider world.

RuthT · Jul 23, 2019

Gosh, the responses posted to ‘answer’ or respond to critiques of the article are very poor indeed.

Peter Trewhitt · Jul 23, 2019

RuthT said: ↑

Gosh, the responses posted to ‘answer’ or respond to critiques of the article are very poor indeed.
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The is standard fare. The defences by the PACE apologists have always been poor, I guess because they are attempts at defending the indefensible.

rvallee · Jul 23, 2019

Even by the usual standards, this is lazy and poorly researched. The author is basically doing the equivalent of reviewing the movie based on watching the first half of the trailer. I don't know why people feel the need to display their misunderstanding of the situation this way.

This belongs more in politics than science. The crux of whatever is being argued here is: there are "others". Unseen and working in the shadows, "others" are doing bad, though unspecified, things. Those things only amount to a handful of tweets that essentially criticize how disastrous the impact has been, essentially mocking us for objecting to informed consent and scientific rigor having being waived off entirely. But there is innuendo of more. More what? BAD THINGS!

However here "leaders" are mentioned and I'd really like for it to be spelled who those "leaders" are supposed to be. Usually it's an indistinct "activists" but here it's pointing fingers in a general direction, with the intent of blaming someone without naming them. Cowardice.

To borrow a famous quip: shallow and pedantic.

rvallee · Jul 23, 2019

RuthT said: ↑

Gosh, the responses posted to ‘answer’ or respond to critiques of the article are very poor indeed.
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I particularly love that they essentially amount to "those refutations are wrong because I don't like them", literally the claim being made against all evidence. It's all so lazy and transparent.

Jonathan Edwards · Jul 23, 2019

I was going to post under the heading:

Thank you troll Jim O'Brien MD for illustrating Jimells point perfectly

but I decided that trolls are best not fed.

I might have gone on to write:

Thank you troll Jim O'Brien MD for illustrating Jimells point perfectly

Think about it for a minute.

Is it your clinic policy to treat people with cluster B behaviour and classic projection by telling them they are trolls? You are an MD? Did you ever hear of respect or compassion? And what if your pet theories are wrong?

If your post was nothing to do with ME then would one not expect a doctor to have the tact not to put that sort of comment on a blog about ME on a professional psychology site?

If psychiatrists have this level of problem with negative transference (that's a code word for not liking people) with people who seem irrational online how do they cope in the clinic where most of the patients are irrational. Do they tell them they are hateful trolls. One dreads to think.

This guy is such a caricature I think he is best left to stew in his own juice.

Jonathan Edwards · Jul 23, 2019

Well done that troll jimells

Barry · Jul 23, 2019

Very nice post by someone:

Patients are not anti-science
Submitted by Anonymous on July 23, 2019 - 4:21pm
The argument that patients are anti-science is a lazy old trope wheeled out by Sharpe time and again, but is not at all true.

This year alone there have been international collaborative scientific conferences on ME/CFS at the NIH, in Australia, in London, at Harvard, and there will be another at Stanford this autumn. The conferences are attended by many scientists who are experts in the field of ME/CFS research, and by patients who attend to listen to the research. The researchers in attendance sit down and speak with patients, and report that they find this incredibly useful. I think all of the scientists at these conferences are in agreement that CBT and GET are not appropriate treatments for this condition. The psychosocial disease model (hypothesis) that CBT and GET for ME/CFS are based on, does not tally at all with the scientific findings of the researchers who are conducting biomedical research into the disease.

Sharpe doesn't engage with this research, but instead claims that the patients don't like CBT and GET because they are anti-science.

Patients are not anti-science at all, they are anti-bad-science which causes them harm. Which, in my view, is quite rational and understandable.

There are hundreds of high quality, highly qualified international biomedical scientists from reputable instorutions researching this disease as we speak. I don't see any of them claiming patients are anti-science. They don't go to the press to criticise sick and vulnerable people. They focus on doing good science, and on treating patients with compassion and respect.

Some of the same compassion would be welcome from Prof. Sharpe. Personally I find it disgusting that a professional in a position of power puts so much effort into broadcasting contempt for sick and vulnerable people in the press. And it concerns me that Sharpe is well aware of the multiple patients who have reported harms from CBT and GET, but appears to show little concern about this. As a researcher I would be concerned, and I would be asking why, not just assuming it's the patients' fault, or that the therapy hasn't been applied correctly. It's a very valid question - why are so many patients reporting serious harm?

The biomedical scientists are sayi to this is because there is a pathophysiology which makes GET potentially dangerous for ME/CFS. Examples of such scientists include Dr Mark van Ness, who has completed several exercise physiology studies in ME/CFS; Profs Donald Staines and Sonya Marshall-Gradisnik who have found problems with the calcium ion channels in ME/CFS patients which they state would make GET inappropriate; and Dr Christopher Armstrong who recently published a metabolomics study in which he clearly stated that GET was potentially harmful because patients have metabolic pathologies which are triggered by exercise.

These are just a few examples, there are hundreds of scientists who disagree with CBT and GET as a treatment for ME/CFS, but Sharpe doesn't engage with them or attend the conferences - he is on the outskirts of the field, not participating in the scientific community.

So I am personally getting extremely tired of this same old, tired argument being wheeled out every few months. It's untrue, it's all about Sharpe trying to save face, and is completely disconnected from the reality of ME/CFS research which is a vibrant scientific international collaborative effort in which Sharpe is not engaging.

So, I ask, who is anti-science?
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NelliePledge · Jul 23, 2019

I think the comments will be rather enlightening to some of the Psychology Today readership so well done all.

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