A general thread on the PACE trial!

Sharpe's tactic of blocking those who disagree, especially when they cite evidence, is going to backfire badly on him.
 
The claim that the cure for the crippling fatigue of ME/CFS was to change your mind always seemed bizarre. Now it really is on the way out…
By Jerome Burne
In September 2016 I posted a blog here about a research bombshell that had just exploded at the heart of one of the most bitter disputes in medicine – how best to treat a condition known as ME/CFS that involves relentless fatigue.

A team of senior academics had just reanalysed the trial, known as PACE, that supported the standard NICE-approved, psychology-based treatment and found that the claimed benefit didn’t reflect what results had shown – that the treatment was virtually worthless.

I thought it was going to be a huge story and have all sorts of repercussions but instead it was largely ignored both by the press and by mainstream medics. I’ve come back to it now because there are signs that opinion professional and popular is turning against the treatment. These include:

**At the end of a debate on ME/CFS in the House of Commons last January, the House supported the proposal that use of this standard treatment should be suspended.

** Hilda Bastian, a veteran public health researcher and key opinion leader who has worked for organisations such as the Cochrane Collaboration in the UK, the German Institute for Quality and Efficiency in Health Care and the National Institutes of Health in America, has recently come out in favour of a change.

In a recent post, she comments that: ‘I think the balance should, and ultimately will, tip towards the ME/CFS consumer movement.’ In other words, it doesn’t work.

** A key feature of this dispute is the hostility between activist patients and their doctors. Once this was rare, now it is emerging in other areas of medicine along with calls for a better was of handling such disputes. This was the topic of my recent blog.
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http://healthinsightuk.org/2019/04/...emed-bizarre-now-it-really-is-on-the-way-out/
 
AR68 said:
The very last section of this article is significant: 'compensation'.

Somebody, somewhere will go to court.
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Jerome Burne frames this in the context of NICE withdrawing their recommendations for CBT and GET for ME/CFS, and all those pwME and families that would then show to have been potentially maltreated. But I suspect there could also be a legal issue if NICE flagrantly ignored ever increasing indications that CBT and GET are being used to treat an illness mechanism that it is clear does not exist in the majority of people being so treated.
 
Barry said:
It is also interesting that a journalist who presumably felt the need to go quiet on this issue back in 2016, now feels the time is right to speak out again.
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To be fair, the propaganda unleashed against us and in promoting garbage research was very effective and difficult to reject based on the institutional support it received. To this day none of the institutions responsible have let up, they are too committed and liable.

Which will make the backlash all that more brutal. People have been lied to. This can hold on for a while, as people reject the notion, but once they accept they were fed a massive load of bullshit, the pendulum tends to swing back with spectacular force.

Overpromising something that can't be delivered can seem great for a while, but holy crap did they go all in on overpromising, and then some.
 
Barry said:
It is also interesting that a journalist who presumably felt the need to go quiet on this issue back in 2016, now feels the time is right to speak out again.
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Jerome mostly covers other issues like diet ( with Patick Holford) and adverse reactions to medication, particularly the statins fiasco. He dips into ME and CFS, as and when. He knows Jo Edwards quite well I believe. He's attended Invest in ME conferences. He is quite approachable, so when asked to help out, he will!
 
rvallee said:
To be fair, the propaganda unleashed against us and in promoting garbage research was very effective and difficult to reject based on the institutional support it received. To this day none of the institutions responsible have let up, they are too committed and liable.

Which will make the backlash all that more brutal. People have been lied to. This can hold on for a while, as people reject the notion, but once they accept they were fed a massive load of bullshit, the pendulum tends to swing back with spectacular force.

Overpromising something that can't be delivered can seem great for a while, but holy crap did they go all in on overpromising, and then some.
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Suffolkres said:
Jerome mostly covers other issues like diet ( with Patick Holford) and adverse reactions to medication, particularly the statins fiasco. He dips into ME and CFS, as and when. He knows Jo Edwards quite well I believe. He's attended Invest in ME conferences. He is quite approachable, so when asked to help out, he will!
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I was really pondering the fact that somewhere a good while back now, either in this forum or PR, it was commented (possibly by @Jonathan Edwards), that a major TV documentary had been planned (or maybe ran), and been slammed hard by the BPS establishment, likely via the old-boys' network, and that UK journalists and their producers have been terrified into silence about ME/CFS ever since. (Note I'm not talking about the rumours of a documentary from a year or so back, but good few years before that). So it's really good to see a UK journalist putting his head above the parapet again.
 
Barry said:
I was really pondering the fact that somewhere a good while back now, either in this forum or PR, it was commented (possibly by @Jonathan Edwards), that a major TV documentary had been planned (or maybe ran), and been slammed hard by the BPS establishment, likely via the old-boys' network, and that UK journalists and their producers have been terrified into silence about ME/CFS ever since. (Note I'm not talking about the rumours of a documentary from a year or so back, but good few years before that). So it's really good to see a UK journalist putting his head above the parapet again.
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A fair and accurate account of the controversy will not come from the UK, unfortunately. At least not until there is a major paradigm shift. There is too much influence against it, it would never get published, too much embarrassment. Although maybe it could get published elsewhere, it would be nice to finally have whistleblowers speaking out.

Which of course will make a very interesting part of any future documentary coming from elsewhere. The cover-up is the most damning part, especially the consistent and well-documented objections that turned out to have been accurate and legitimate, despite having been rejected as irrelevant.
 
Barry said:
I was really pondering the fact that somewhere a good while back now, either in this forum or PR, it was commented (possibly by @Jonathan Edwards), that a major TV documentary had been planned (or maybe ran), and been slammed hard by the BPS establishment, likely via the old-boys' network, and that UK journalists and their producers have been terrified into silence about ME/CFS ever since. (Note I'm not talking about the rumours of a documentary from a year or so back, but good few years before that). So it's really good to see a UK journalist putting his head above the parapet again.
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There was a documentary by Channel 4 (I think) possibly 20 years ago or more (I am not good on detail) which was about the way mothers of children with ME are investigated for Munchhausen's by proxy.

One of the doctors said he had no been given enough right of reply, maybe said he was taken out of context so they were forced to apologise. So a programme about the abuse of children became about the "suffering" of the doctors doing the abuse.

It is disgusting that the same institutional abuse of families with ME is still happening so many years after having it brought to public notice in a documentary.
 
Forskning.no, a Norwegian news site about research, has had a couple of critical articles about the PACE trial, but today they have an article claiming the trial was let completely off the hook by Health Research Authority.

Professor Wyller is interviewed, so is Ingrid Helland, leader of the national competence center for ME/CFS, both known for their biospsychosocial approach to ME.

Only speculations from my side, but was this an important article to get published before Cochrane's final decision about the review on GET and ME which is due in May?

Forskning.no: Omstridt ME-studie undersøkt: Forskerne fant ingen metodefeil
google translation: Controversial ME study investigated: Researchers found no method error

HRA, which is a kind of watchdog for research, has concluded that the study was verifiable and met all the guidelines for studies that applied at that time.

There is no reason to consider the PACE study to be of poor quality, according to Jonathan Montgomery, head of the HRA, in a letter to the Research and Technology Committee.

....
Professor Vegard Bruun Bratholm Wyller believes the report from the British health authorities supports that the criticism of the PACE study has been unfounded. He is a senior consultant at the Children's and Youth Clinic at Ahus.

"This criticism seems to be scientific, but in reality it is marked by a campaign aimed at weakening the credibility of the PACE study. The report that is reproduced in BMJ is just about just ethical / legal aspects, but the researchers behind the PACE study have recently entered in depth - and very convincing - on the methodological objections, he writes in an email to forskning.no.

Read the relief here in BMC Psychology 2019.

- There is therefore no need to question the main conclusion of the PACE study: Many patients with ME may benefit from cognitive behavioral therapy and that there is no reason to be afraid of the harmful effects of such treatment. This is also consistent with several other studies, and also fits well with what we otherwise know about disease mechanisms at ME, he writes.
 
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