Rethinking the treatment of CFS — a reanalysis and evaluation of findings from a recent major trial of GET and CBT (2018) Wilshire et al.

Specifically, we support this study's conclusion that research into effective treatments must move away from behavioural approaches and focus instead on the pathophysiology of the condition and its phenotypes. Action for M.E. actively supports investment in collaborative research that helps us stratify the illness, identify biomarkers, and ultimately lead to better treatments, and hopefully a cure.

We would also like to highlight our concerns regarding the Science Media Centre statement, published yesterday in advance of the re-analysis, and its dismissal of the significant scientific debate, and the growing lack of consensus, about appropriate treatments and clinical guidelines for M.E. and/or CFS.

This lack of consensus is evidenced by the decision taken by the Centers for Disease Control and Prevention, the leading national public health institute of the United States, to stop recommending CBT and GET, following careful consideration of peer-reviewed research, including the Institute of Medicine (IOM)’s 2015 report on M.E.
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https://www.actionforme.org.uk/news/​pace-update-latest-analysis-and-comment/
 
Congratulations and thanks all round.

If readers wish to promote the study, an excellent way to do so is to link to the paper in posts on websites adding a little text to accompany the post. Use keywords like PACE, ME, CFS etc.

This creates a web leading to the paper, and is taken into account in search engine rankings. The higher the 'quality' of the site linking to the paper, the more likely it is to boost the rankings. (what 'quality' is, is generally unknown as is hidden by the search engine companies to avoid 'gaming' the results.)

It's a pretty good way to do activism in a way that is available to most.

If you need help in linking, reply to this post and I'll try to help out.
 
The Wilshire et al. paper is also covered in the print edition of today's Times – on page 2!

It's different to the online coverage. It's written by Tom Whipple, the science editor:

Findings of £5m ME study 'worthless'

A landmark £5 million study that formed the basis for NHS treatment of ME sufferers has been heavily criticised for its "troubling" use of data, in new research that claims its recommendations were largely worthless.

Since 2011 the estimated 250,000 Britons with ME, also known as chronic fatigue syndrome, have been offered treatment based on exercise and cognitive behavioural therapy, after a study known as the Pace trial was published in The Lancet and seemed to show this approach improved symptoms.

Now, after a freedom of information request forced the scientists behind the 2011 study to release their raw data, other researchers have performed their own analysis. They said their study, published in the journal BMC Psychology, raised "serious concerns about the robustness of the claims" made about exercise and therapy.

Keith Geraghty, from the University of Manchester, said at the very least the £5 million trial represented wasted resources. "I would argue it could have been spent more wisely," he added.

The authors of the original Pace trial stood by their findings.
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Very good, I think, especially considering the space restrictions - and I'm very pleased to see something like this so prominent in the paper.
 
The Daily Mail:
Findings of chronic fatigue study `not reliable´
Findings from a controversial medical trial which claimed psychotherapy and exercise helped patients with ME were not reliable, a new study has found.

The PACE trial, which was funded by the Medical Research Council, aimed to establish the best way to treat sufferers of myalgic encephalomyelitis, otherwise known as chronic fatigue syndrome.

When its results were published in 2011, researchers claimed that graded exercise therapy (GET) and cognitive behavioural therapy (CBT) were “moderately effective” forms of treatment, each leading to recovery in more than a fifth of patients.
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Lead author Dr Carolyn Wilshire, from the University of Wellington in New Zealand, said: “Our re-analysis was designed to explore how the PACE trial outcomes would have looked if the investigators had adhered to the primary outcome they described in their original published protocol.

“We also looked into the published data on long-term outcomes to examine whether they had been influenced by the treatments patients had received after the trial had ended.

“We found that the groups receiving CBT or GET did not significantly outperform the control group after correcting for the number of comparisons specified in the trial protocol. Rates of recovery were consistently low and not significantly different across treatment groups.”
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No mention of the SMC 'facts'.

http://www.dailymail.co.uk/wires/pa/article-5532233/Findings-chronic-fatigue-study-not-reliable.html
 
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chicaguapa said:
There are 2 audiences for this 1) Expert health professionals/ scientists who drive research and 2) The public and the medical profession who cast a glancing eye over these types of stories.

Don't underestimate the power of planting a seed of doubt over GET/CBT. We know how damaging headlines saying ME patients can exercise themselves out of it have been, even when people don't read the story. The way this paper has been presented by the BBC and The Times is good from that perspective. Easy bite sized pieces we can share with the uninitiated who don't want to wade through scientific sounding papers or even read the story.
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Yep, mainstream media stories shouldn’t be scientific essays or no average member of the public will ever read any of it. Having these stories planting the seed of doubt out in the British mainstream media is fantastic and a huge achievement. Well done to everyone who got this out there!
 
I saw the article on the BBC news front page at 9.45am and was surprised (astounded!) as I thought it would be another attack on ME patients. I went back at 10.15 to check some wording and discovered it had been removed to the health pages. Obviously the story that had run for 3 days about "Claire's Accessories and your childhood" was of more pressing importance.
 
The Canary (the tittle is a bit over the top IMO)

The mainstream medical community just declared war on people living with ME
Patients: trying to “disrupt” research?
The Science and Media Centre (SMC) is a charity that promotes cooperative working between the media and the medical and scientific communities. On Wednesday 21 March it appeared to strike out preemptively against the new research with an updated “factsheet” on ME/CFS called The illness and the controversy. Advocating for the PACE Trials’ results, it said it and CBT/GET were:

Highly controversial among a minority of patients and doctors.

Filmmaker Jennifer Brea, who lives with ME, noted it went on to ‘disrespectfully‘ dismiss patients and medical professionals who disagreed with the PACE Trials. The SMC said:

Some people do not accept that psychological factors play a role in the illness or its treatment… Some also claim that these treatment are harmful. A minority have engaged in activities designed to actively disrupt such research.

Those who disagree with… [the PACE Trials’] body of evidence cite review articles and reanalyses of trial data published in low impact factor journals…

But Brea, who made the groundbreaking film Unrest about living with ME, hit back at the SMC. She claimed it was “promoting pseudoscience” and that it was compromised by a trustee’s links to the psychological model of understanding ME.

So, what caused the SMC to fire an opening salvo against this new research? And why is Brea so angry about its updated factsheet?
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https://www.thecanary.co/discovery/...y-just-declared-war-on-people-living-with-me/
 
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