The Times - Call for review of ‘flawed’ ME research in Lancet letter

More than a hundred academics have joined ten MPs and scores of patient groups from around the world to sign an open letter calling for The Lancet to reanalyse a study into treatment for myalgic encephalomyelitis (ME).

The letter follows a debate in parliament in which one MP said that the study, which is used to set NHS guidelines, “will go down as one of the biggest medical scandals of the 21st century”. The authors of the research paper stood by their findings and said that the letter represented a campaign to discredit solid research and force the retraction of papers simply because patients disagreed with their findings.
Click to expand...
https://www.thetimes.co.uk/article/call-for-review-of-flawed-me-research-in-lancet-letter-l75rvcprh - Free sign-up required to read full article.
 
Thanks - good news!

Funny that the Lancet declined to comment, and that this is coming as there's renewed attention on the fallout from their MMR/Wakfield paper.

Here's the link: https://www.thetimes.co.uk/article/call-for-review-of-flawed-me-research-in-lancet-letter-l75rvcprh

Includes reference to the Monaghan quote:

"The letter follows a debate in parliament in which one MP said that the study, which is used to set NHS guidelines, “will go down as one of the biggest medical scandals of the 21st century”. The authors of the research paper stood by their findings and said that the letter represented a campaign to discredit solid research and force the retraction of papers simply because patients disagreed with their findings."

I wish we could get people in the media to not focus on the 'all in the mind' stuff, which is such a distraction from the most important issues:

"The £5 million publicly funded trial was published in The Lancet and has informed advice on treating people with ME in the NHS and abroad, but is controversial among ME sufferers. Some claim that its advice perpetuates an idea that the disease, which causes debilitating disability, is all in the mind."

Thanks a lot to Whipple, and especially Tuller.
 
Last edited:
Esther12 said:
Thanks - good news!

Funny that the Lancet declined to comment, and that this is coming as there's renewed attention on the fallout from their MMR/Wakfield paper.

Here's the link: https://www.thetimes.co.uk/article/call-for-review-of-flawed-me-research-in-lancet-letter-l75rvcprh

Includes reference to the Monaghan quote:

"The letter follows a debate in parliament in which one MP said that the study, which is used to set NHS guidelines, “will go down as one of the biggest medical scandals of the 21st century”. The authors of the research paper stood by their findings and said that the letter represented a campaign to discredit solid research and force the retraction of papers simply because patients disagreed with their findings."

I wish we could get people in the media to not focus on the 'all in the mind' stuff, which is such a distraction from the most important issues:

"The £5 million publicly funded trial was published in The Lancet and has informed advice on treating people with ME in the NHS and abroad, but is controversial among ME sufferers. Some claim that its advice perpetuates an idea that the disease, which causes debilitating disability, is all in the mind."

Thanks a lot to Whipple, and especially Tuller.
Click to expand...

Yes, important point. Almost every legitimate and sensible concern is labeled in media as patients opposing “all in the mind” phrase. Thats beside the point and not really contributing to raise awareness of the underlying bad science and the potential negative impact. It is so easy to dismiss patients concerns when recycling such phrases.

Wish more media and science journalists would set the agenda and involve in the facts of matter. Let’s instead discuss the hypothesis and theory of deconditioning and ME. Let’s discuss GET. Break it down in bits and parts, dissect it from every angle. I’m afraid that the thesis of MOVE is so deep that many physicians can’t see past it, especially not when a study like PACE comes around and then angling patients as only opposing the “all in the mind”. Then it all kind of stops there, nor will media itself or otherwise reasonable physicians look further. There are exceptions, of course.

One is told to MOVE from cradle to grave no matter what condition or illness and there are good reasons for it, promoting health in every single way. No one can argue against the benefits of movement and isolated that also applies to ME. It is a no brainer that movement will be good/positive for other issues that ME patients will have a high risk of developing, for muscles and other things, but.. As we are aware of, all pre-illness healthy and active patients, is that movement as in training/raising pulse/moderate, even what must be characterized as pretty mild movement attacks the core of the dynamics of ME. As patients we won’t wont speculate in cause, but HEAR US ON THIS, take notice and figure it out! It crushes patients over and over again. Impact is short and long. One can in theory handle the day to day PEM, but there are long-term consequences if addressing this the wrong way over and over again. Why is that so hard to understand? Why is it so hard to imagine that there must be something wrong with the way the body produce energy and lack and delay of restorative effect? There are millions of experiences. Again: one can only think of a number, but millions of patients have been in good and great shape before ME. They know what they could do and what they now can, and it is not like a little difference, it is totally fundamental and dramatic. So don’t oversell us GET crap as an easy universal solution.

To propose a hypothesis of deconditioning as cause for ME, well that is no other than an insult to intellect. It is so lousy, so off mark and beyond what one thought was possible. It has nothing to do with science but a result of bad attitudes and politics.
 
dave30th said:
yeah, I dislike that phrase. The PACE authors don't think that anyway. They genuinely believe people have bad symptoms. They have just insisted the symptoms come from deconditioning, not an underlying organic illness.
Click to expand...
Yes but in my simple head with ME they are saying that the difference between us and the people who recover from the nasty virus or whatever triggers it is we become deconditioned because of our unhelpful beliefs and behaviours. Which they attempt to treat by changing our beliefs and behaviours. That’s the same as saying if your head was right you wouldn’t have these physical issues.
 
Peter said:
To propose a hypothesis of deconditioning as cause for ME, well that is no other than an insult to intellect.
Click to expand...

This is what David McCluskey said about deconditioning in his Ciba paper from 25 years ago:
The data undoubtedly show that deconditioning (a vicious spiral of progressively reduced physical fitness) plays some part in the manifestations of the disorder, as reflected by the higher heart rates at rest and the higher heart rates and whole-blood lactate levels at submaximal exertion. However, deconditioning by itself is not sufficient to explain the features of the disorder, because CFS patients describe and display marked fluctuation in their exercise capacity during the course of their illness.
Click to expand...

From the discussions after Sharpe's paper, White talks about combining CBT and GET for the first time - but mentions GET in reference to McCluskey. I'm going to have to do more digging...

[ETA: More digging going on here]
 
Last edited:
Sly Saint said:
Just been reading the comments; ugh.
It seems that the moderators are deleting comments with references (or it might just be links) to scientific evidence:

"Jaquie Wilson:

Shall I bombard you with robust, biological research which proves ME is biological? Problem is, my comments keep disappearing, so I must be upsetting someone..."
Click to expand...

Just IMHO but I'm not sure going into the comments isn't counterproductive. Seeing people post tens of comments actually plays into the vexatious narrative of the BPS brigade.
 
Robert 1973 said:
@dave30th I wonder if this presents an opportunity for you to get the letter (or an abbreviated version) published in the Times as a Letter to the Editor?
Click to expand...

That would be a good opportunity to call for more signatories (both before submitting it and in the Times letter itself).

And there are other British newspapers apart from The Times that have published good stuff on ME that would also be worth considering, if The Times failed to publish.
 
dave30th said:
yeah, I dislike that phrase. The PACE authors don't think that anyway. They genuinely believe people have bad symptoms. They have just insisted the symptoms come from deconditioning, not an underlying organic illness.
Click to expand...
Yes, but they do believe that PwME's mindset blocks them from "realising" they can improve/recover from their physical condition by exercising their way out of it, if only the PwME believed they could do so. By stating someone's condition is only perpetuated by having the wrong thoughts/mindset to escape it, that is not very far away at all from presenting the problem, colloquially, as all in the mind.
 
I thought this same journalist had covered this story a while back. If the Lancet are just going to sit on their hands as long as they can and completely get away with it I think it shows why we need a group like #MEAction who might come up with innovative ways to get this boil lanced.
As someone on Facebook says, whilst this is obviously delaying progress we should as a community be pushing for fundamentally more research of the sums invested in PACE & FINE by the MRC / NIHR. If the biomedical research progressed enough to prove our abnormalities and get effective treatments whatever these psychological brigade said wouldn’t matter or would in effect be disproven. The problem has been the PACE narrative plus lack of research , obviously interlinked, but we haven’t fought for the latter AFAIC past ten years.
 
Cinders66 said:
I thought this same journalist had covered this story a while back. If the Lancet are just going to sit on their hands as long as they can and completely get away with it I think it shows why we need a group like #MEAction who might come up with innovative ways to get this boil lanced.
As someone on Facebook says, whilst this is obviously delaying progress we should as a community be pushing for fundamentally more research of the sums invested in PACE & FINE by the MRC / NIHR. If the biomedical research progressed enough to prove our abnormalities and get effective treatments whatever these psychological brigade said wouldn’t matter or would in effect be disproven. The problem has been the PACE narrative plus lack of research , obviously interlinked, but we haven’t fought for the latter AFAIC past ten years.
Click to expand...
Agree that getting more biomedical research, however that can be achieved, is the answer, otherwise will likely have to fight all sorts of problems indefinitely (plus of course the hope it [more research] might lead to treatments).
 
You must log in or register to reply here.
Back
Top Bottom