BMJ: Pressure grows on Lancet to review “flawed” PACE trial

Robert 1973 said:
Do you think the pluralisation of syndrome was a typo or deliberate? Is he suggesting there are different chronic fatigue syndromes? I’m not blocked on Twitter so I could ask him.

I have also just submitted a rapid response to the BMJ, making similar points to the above.
Click to expand...
Wouldn't be at all surprised if a subtle attempt to muddy the waters, and try to imply PACE worked for his kind of CFS, and not the ones that now show increasing evidence of biomedical malfunction. His kind of CFS likely not ME/CFS. Feels like he's edging a step towards his escape route.
 
Robert 1973 said:
Do you think the pluralisation of syndrome was a typo or deliberate? Is he suggesting there are different chronic fatigue syndromes?
Click to expand...

It may be that he is referring the fact they looked at a subgroup that met London criteria for ME. But he does use 'CFS' as acronym for 'chronic fatigue syndromes', and the two aren't synonymous. Also GET has turned into graded activity therapy.
 
Robert 1973 said:
Do you think the pluralisation of syndrome was a typo or deliberate? Is he suggesting there are different chronic fatigue syndromes? I’m not blocked on Twitter so I could ask him.

I have also just submitted a rapid response to the BMJ, making similar points to the above posts.
Click to expand...

I wondered about the plural too. He also said expediently on Twitter a while back that PACE trial was for CFS not ME - and 'blamed' media for confusing the terms. He truly is a piece of work. I'm blocked, like most of us, so can't challenge him, but am also so bored by him I wouldn't waste my energy.
 
"This 'news item' refers to a three times recycled letter..."
Click to expand...

quote-if-you-have-an-important-point-to-make-don-t-try-to-be-subtle-or-clever-use-a-pile-driver-winston-churchill-5-63-14.jpg
 
Robert 1973 said:
Is he suggesting there are different chronic fatigue syndromes?
Click to expand...

His 1998 book with Wessely and Hotopf is entitled "Chronic fatigue syndromes". Chapter 14 is "Other Chronic fatigue syndromes".

"..When bowel symptoms are prominent in a subject with chronic fatigue, irritable bowel syndrome is a likely diagnosis; when muscle pain is prominent, the result may be fibromyalgia; and when chest pain and breathlessness are important complaints, effort syndrome may be diagnosed.

All these syndromes share various features. All are "medically unexplained" in the sense that no clear-cut biomedical explanation has ever been accepted as underlying the symptoms, although many have been proposed."

The chapter then has sub headings for fibromyalgia, IBS, effort syndrome (Da Costa's syndrome, neurocirculatory asthenia, soldier's heart, mitral valve prolapse), chronic brucellosis and chronic Lyme disease and burnout.

I am still puzzling over the final paragraph of Chapter 12 "The role of psychological factors":

"Caveat

This chapter is concerned with the tragic plight of what may be a small group of people-those who have the symptoms of CFS, the belief that their illness is called CFS or ME, and who show considerable disability and/or a need to make substantial accommodation to their illness. They are not representative of the population of patients with chronic fatigue, and may not be representative even of those who use the term CFS or its variants to describe their illness. In primary care, somatic attribution of fatigue was not associated with more physical symptoms, less psychological distress, or a worse outcome. We know little about the illness representations of this group: this is an important area of investigation, particularly if as we suspect, such people experience less disability than those who attend specialist clinics."

I genuinely have no idea what this is intended to state, but I presume it refers to a distinct "chronic fatigue syndrome".
 
Nasim Marie Jafry said:
I wondered about the plural too. He also said expediently on Twitter a while back that PACE trial was for CFS not ME - and 'blamed' media for confusing the terms. He truly is a piece of work. I'm blocked, like most of us, so can't challenge him, but am also so bored by him I wouldn't waste my energy.
Click to expand...
And he often conflates the two himself, using the two terms interchangably.
 
And another comment. This time from Nasim Marie Jafry

Unfortunately, those who supported the PACE trial have compounded the suffering of ME patients by refusing to listen. PACE and its subsequent trumpeting by media as tackling ‘fear of exercise’ was an insult and catastrophe for patients all over the world. Carol Monaghan MP is correct to state that when full details are known that PACE will go down as one of the biggest medical scandals of 21st century.
https://www.bmj.com/content/362/bmj.k3621/rapid-responses
 
Is Jonathan Edwards correct that people aren’t objecting to psychological and exercise as treatment CFS research per se? I thought the MEA petitioned stop the trial before it started, not just out of concern for the quality of the science but at it seeming a very bad way to focus limited funds given what we know about the illness and the underlying premise of the CBT model. Kinda like we have £5m to advance Alzheimer’s, how about a massive study on brain training app. Michael sharpe presents this as some type of unhelpful prejudice but it isn’t, it’s just sick people being fully aware of the limits of talking therapy and exercise.

If the MRC proposed more funding for psychological therapies or simplistic exercise yourselves well despite PEM, whilst continuing to starve biomedical research, especially ones based on ideas of correcting unhelpful beliefs, I’d be furious regardless of including actigraphy, proper blinding etc. I wouldn’t object to something in the proportion of what happens with MS, millions spent on biomedical research and the odd hundred grand looking at counseling, useful CBT or adjustment support.
 
Last edited:
Cinders66 said:
Is Jonathan Edwards correct that people aren’t objecting to psychological and exercise as treatment CFS research per se? I thought the MEA petitioned stop the trial before it started, not just out of concern for the quality of the science but at it seeming a very bad way to focus limited funds given what we know about the illness and the underlying premise of the CBT model. Kinda like we have £5m to advance Alzheimer’s, how about a massive study on brain training app.
If the MRC proposed more funding for psychological therapies or simplistic exercise yourselves well despite PEM, whilst continuing to starve biomedical research, especially ones based on ideas of correcting unhelpful beliefs, I’d be furious regardless of including actigraphy, proper blinding etc. I wouldn’t object to something in the proportion of what happens with MS, millions spent on biomedical research and the odd hundred grand looking at counseling, useful CBT or adjustment support.
Click to expand...

There may have been a few original signatories, and perhaps a few more recently, who have expressed the view that research should be focused on other things. I agree. And most of us would probably think focus on other things was appropriate. However, the bulk of the signatories signed because they thought PACE was a bad study and had not expressed any desire to block psychological research. Wanting priority for other things is not the same as wanting to prevent any form of research.

I appreciate that you might be furious about the type of research funded but I was referring to the signatories. David Tuller brought in people not directly involved to give expert opinion, which is in stark contrast to Sharpe's claim that we were all emotionally committed ME advocates, and so most of us were judging entirely on the quality of the science.

I think the main reason why objections to PACE failed early on is that there was too much emphasis on it being not the sort of research the objectors wanted. That is not a valid argument from a scientific point of view. We still do not have scientific evidence for any particular biological mechanism for ME so prioritising needs to be done on quality of hypothesis. The BPS hypothesis was very poor, but that does not mean that all psychological research would be based on poor hypotheses.
 
Jonathan Edwards said:
There may have been a few original signatories, and perhaps a few more recently, who have expressed the view that research should be focused on other things. I agree. And most of us would probably think focus on other things was appropriate. However, the bulk of the signatories signed because they thought PACE was a bad study and had not expressed any desire to block psychological research. Wanting priority for other things is not the same as wanting to prevent any form of research.

I appreciate that you might be furious about the type of research funded but I was referring to the signatories. David Tuller brought in people not directly involved to give expert opinion, which is in stark contrast to Sharpe's claim that we were all emotionally committed ME advocates, and so most of us were judging entirely on the quality of the science.

I think the main reason why objections to PACE failed early on is that there was too much emphasis on it being not the sort of research the objectors wanted. That is not a valid argument from a scientific point of view. We still do not have scientific evidence for any particular biological mechanism for ME so prioritising needs to be done on quality of hypothesis. The BPS hypothesis was very poor, but that does not mean that all psychological research would be based on poor hypotheses.
Click to expand...
Yes. The psychological/physiological thing is a distraction in many ways. What patients most want is good-science based research, and to deter bad-science research. I, like anyone else I would hope, would be dead against a physiological research project if it was clear from the outset it was going to fall into the same methodological traps as PACE.
 
Jonathan Edwards said:
I think the main reason why objections to PACE failed early on is that there was too much emphasis on it being not the sort of research the objectors wanted. That is not a valid argument from a scientific point of view.
Click to expand...

I thought that the MEA (who objected to PACE from the beginning) didn't want the trial done because they had plenty of reason to believe that graded exercise was dangerous. I can't find the original info, though - perhaps I'm rewriting history in my head.
 
Sasha said:
I thought that the MEA (who objected to PACE from the beginning) didn't want the trial done because they had plenty of reason to believe that graded exercise was dangerous. I can't find the original info, though - perhaps I'm rewriting history in my head.
Click to expand...

I wasn't necessarily thinking specifically of MEA. But I think even for MEA it was 'not the sort of research they wanted'.
 
I said:
The unhelpful belief, perpetuated by the trial, that ME can be “reversed” by teaching patients to think differently and/or gradually increase exercise has not only led to the mistreatment of patients but it has also inhibited biomedical research which may have led to diagnostic tests and effective treatments.
Click to expand...

In my response, I was in two minds about whether to refer to specifically biomedical research or not. On the one hand I wanted to emphasise that the methodological problems with PACE are nothing to do with how ME is classified, but I also wanted to express my view that it is regrettable that biomedical research has been neglected in the way that it has. I hope I made it sufficiently clear that these are separate issues.
 
You must log in or register to reply here.
Back
Top Bottom