New poor Guardian article "ME and the perils of internet activism" 28th July 2019

My brief comments on some of what is said in the article:

"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.”
When researchers publish clinical trials on other behavioral interventions for ME/CFS such as the envelope theory or pacing, there is little controversy. When papers describe the negative effects stigma and misunderstanding have on ME/CFS patients there are no claims that studying this psychological component is inappropriate. When the vice-president of the IACFS/ME Lily Chu, wrote an article about depression and suicide in ME/CFS and the lack of access to appropriate mental health care, she was lauded for raising the issue. Some of the most vocal critics of the PACE trial such as James Coyne, Leonard Jason, Ellen Goudsmit and Carolyn Wilshire have been academic psychologists. It seems rather unlikely that they criticize the trial for "suggested there might be a psychological component to the manner in which sufferers experience the illness.”"

"finally, question marks were raised over the trial’s methodology."
The article doesn’t mention that the authors deviated from their protocol in reporting the outcomes and results of the PACE trial. They failed to specify these changes in full and did not provide a sensitivity analysis to see how the changes affected the results. When this was pointed out, the PACE-authors refused to provide answers or information about the effect of these changes. PLOS One had to publish an expression of concern for one of the PACE-publications because the authors’ refused to share their data is as recommended by journal policy. Eventually part of PACE trial data became available, through a freedom of information request and first tier tribunal decision. A reanalysis according to the method specified in the published protocol, found that the PACE authors had inflated recovery and improvements rate threefold. There was no longer a significant difference between the intervention groups. An open letter signed by more than 100 prominent ME/CFS experts including researchers clinicians and MP's has called the Lancet to "commission an independent re-analysis of the individual-level trial data, with appropriate sensitivity analyses."

"David Tuller, a former HIV campaigner, who has become something of a hero to the ME/CFS community in the UK."
David Tuller is an experienced journalist and Senior Fellow in Public Health in Journalism at the Center of Global Public Health, School of Public Health, University of California, Berkeley, California. Tuller reported on the findings of the PACE-trial in 2011 in an article for the New York Times, titled “Psychotherapy Eases Chronic Fatigue Syndrome, Study Finds.” It’s only when confronted with critical comments that he began to delve deeper into the methodological issues and became a vocal critic of the PACE-trial.

"he was instrumental in persuading the respected science journal Cochrane Database of Systematic Reviews to withdraw a paper that looked at eight randomised controlled studies of exercise therapy for ME/CFS."
Cochrane received a formal complaint about its review on graded exercise therapy by Robert Courtney in 2018. An internal audit at Cochrane indicated Courtney’s criticism to be well-founded. Therefore Cochrane has insisted on a revised version of the review which is currently ongoing. A detailed analysis of the review was published by Vink & Vink-Niese in 2018 in Health Psychology Open, doi: 10.1177/2055102918805187.

"Sharpe says that the Cochrane editor “wilted badly… under direct pressure” from activists. The editor has since retired, and Sharpe understands that his decision is to be reversed."
This claim has proven to be unfounded. Regarding the decision to potentially withdraw the review, former Editor in Chief David Tovey publically stated, “this not about patient pressure.” An internal email exchange between Cochrane and the Norwegian Institute of Public Health (which houses two of the authors of the review) indicates that concerns about the Cochrane review were raised by multiple experts. “When a collection of experienced and dispassionate colleagues are all making, in effect, the same criticisms”, Tovey wrote in an email, “it is hard to ignore this.” https://wordpress.com/block-editor/post/mecfsskeptic.wordpress.com/16

"He maintains that there was nothing untoward or biased about the trial. “We got a fairly clear answer, but it wasn’t an answer that people wanted to hear.”
The main researchers of the PACE have designed, studied and promoted graded exercise therapy (GET) and cognitive behavioral therapy (CBT) in ME/CFS, before the start of the PACE trial. A document by the authors explaining the need for the PACE trial, wrote: “We ourselves completed three out of seven of the RCTs of CBT and GET. The therapies and measures to be used are essentially the same as used in these successful trials.” Michael Sharpe was the lead author of “the Oxford criteria” used to diagnose patients eligible for the trial. Another author, Trudie Chalder, was the lead author of one of the trial’s primary outcome measure tools – the Chalder Fatigue Scale. The hypothesis, as specified in the trial protocol, was that GET and CBT would outperform the medical care offered in the control groups. During the study, the PACE team published a newsletter for participants that included information about the new NICE guidelines recommending GET and CBT and glowing testimonials from earlier trial subjects about how much the “therapy” and “treatment” helped them.

"He believes ME/CFS activists are absolutely set against “any implication whatsoever that there could be any aspect to their illness which isn’t rooted in biological disease. Any little hint that it couldn’t be, becomes [the] equivalent of saying it’s not real, it’s imagined, you’ve made it up.”
I hope that ME/CFS advocates are entitled to a full reply to this accusation.

 

I can’t see a comment facility. Well that keeps things neat and tidy for them

@dave30th you’ll want to read this

 

Well i was feeling a sense of utter despair... I mean i dont know how long i can go on enduring this non-life that I'm living when these people seem to have the reality twisting completely sewn up. It's just completely extraordinary, the way everything he does is twisted & reported as what we (patients) are doing. It is self evidently they who start out with a right/wrong answer & design their trials to appear to prove it. It just mangles my brain the way everything they are accusing 'activists' of, is what they are doing themselves. It's frickin genius & i just feel despairing that it will ever change.

And then Sten Helmfrid, with a quote on that twitter thread that just made me laugh so much, it's glorious in it's juvanile appropriateness.

thank you Sten, thank you.


Edit - changed 'infantile' to 'juvenile' - brainfog

 

Are comments possible to this article? I agree that a comment by someone like Jonathan Edwards would be helpful, but it would do little to change the narrative. Few people would read it, I guess.

What is needed, I think, is a counter-article or published comment where critics of the PACE-trial explain how their critique has been misrepresented and how they have been the subject of intimidation and false accusations for raising issues with the trial's methodology. People like Carolyne Wilshere, James Coyne, Jonathan Edwards, Keith Geraghty and perhaps also Caroline Struthers, Carol Monaghan, Julie Rehmeyer etc. have been public about this and might be willing to sign such a letter if someone were to take the lead.
Evidently, the focus should be on the issues with the PACE-trial not on what ME/CFS is or not or how 'promising' biomedical research on ME/CFS is...

 

I think what is needed is to beat them at the media game. They have exposed themselves with the grossly misleading articles. It would be easy to show how dishonest they are.

I also wonder if collective legal action is possible.

 

@dave30th this sounds like a worthwhile idea.

 

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What the readers’ editor won’t look at

The Guardian's Editorial Code
"Find out what rules Guardian journalists must adhere to and read the Guardian’s code of conduct for journalists"

https://www.theguardian.com/info/2015/aug/05/the-guardians-editorial-code

 

"Why do the Guardian do this why do the Guardian do that, why dont they get it, bla bla bla....."

I'm sorry but if its not obvious by now that you can buy your own articles written by yourself in national newspapers and the national media I dont know what to say. Its a revolving door of shared interests and funny handshakes, pressure and bullying etc.

The mainstream is the fake news for god sake people. The narrative put out by the mainstream and the establishment of "fake news online" etc is transference.

They are desperate to maintain control of how any narrative should be presented and if its contrary to their interests they throw the meme at it of fake news and "activism" or conspiracy theory that is dangerous.

That's why the establishment is desperate to control the internet with new laws to protect us all and censor out whatever they deem unsuitable for our poor little eyes and ears.

All information will come from the government and anyone commenting contrary to their narrative will be labelled a dangerous outlier. We are really not far from the establishment giving themselves the powers to prosecute such dangerous individuals.

 

@large donner Yeah thats right. Problem is, somewhat understandably, the average person will look at an article they don't know much about and assume it is right because it's in a mainstream paper that they like. It is only after you see a paper be consistently wrong about several things that you are somewhat knowledgeable in that you start to realise you should take everything in media with a heap of salt.

It's just some people have grown up all there lives trusting certain newspapers as sources. It will be hard for those people to change.

 

I expect the BPS collective is getting nervous about the NICE guideline review and also the Oxford-Brookes report just came out.

 

Deja vu

When Wessely left ME/CFS research, he complained about people contesting his work

When Peter White left ME/CFS research, he complained about people contesting his work

When Michael Sharpe left ..

They seem to be most concerned about one thing, how history sees them.

 

A scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die and a new generation grows up that is familiar with it.

Max Planck

 

I mean, if someone is just allowed to make stuff up, claims that can be verified in a few minutes as literally the last thing he published, what's the point? Why even bother publishing this hate porn against a vulnerable population if not just for the purpose of hating on us?

Getting really close to meriting a restraining order on this guy. It seems Sharpe has decided that having been pushed out for his own incompetence, he will punish all those he has already harmed. At this point most of the blame lies in those who repeat obvious fabrications. This article is filled with small factual errors, the kind that are easy to fix if it weren't for the purpose of just demonizing us for begging for help once again.

This is pure spite and bullying. Shame on the Guardian for loading the gun on us once again. The bigotry and prejudice are just shameful.

 

At this point, I'm sorry, this just screams of petty revenge. Sharpe and Wessely just want us to suffer more for daring to object to their beautiful theories. Pure spiteful bullying, with the full knowledge that we will be hated more, insulted and mocked in public opinion.

The article mentions lawsuits. Not sure what those are, FOIs are not lawsuits. But they haven't seen anything yet. This hate porn against the sick will not age well.

 

Which is why the Rituximab and Mestinon trials are super controversial and subject to campaigns of howling hatred and wait a minute literally not. Nearly all clinical trials are about dealing with symptoms, total cures are rare. The degree of nonsense is just beyond parody here.

 

Then proceeded to work on CFS research for a decade, publishing dozens of papers and including working, behind the scenes, because reasons, on PACE itself, where he was heavily involved in writing the manual, trial design and even was a center leader. All after he "left" the field so publicly he had articles written about it in national newspapers. What a load of crap.

The absence of any fact-checking is a complete failure of journalism.

 

It interests me that I am never mentioned in these diatribes. How might I be described - a crackpot retired professor from a tin pot UK medical school, probably overdosing on pot, who has lost it and got conned by these mad patients?

My impression is that Michael Sharpe must be very frightened by developments. My report to NICE is supposed to be strictly confidential but I would be surprised if it had not been read by people outside the committee.

It is likely that someone is keeping tabs on threads here too.

When I wrote my witness testimony in about April I was fairly measured about my concerns about incompetent peer review and interference from people with vested interests. Since then it has become clear that things are much worse than I had thought. The Cochrane business shows just how much things are manipulated.

I actually think this article can be ignored completely since it changes nothing other than to emphasise how worried Dr Sharpe must be. Nobody of importance is going to take it seriously.

 

The idea that I was "instrumental" in persuading Cochrane to do anything is ridiculous. I had a meeting with David Tovey in which I pressed the case. Period.