CORRESPONDENCE The PACE trial of treatments for chronic fatigue syndrome: a response to WILSHIRE et al (2019) Sharpe, Goldsmith & Chalder

Its laughable that Vogt has to quote tabloid newspapers as his truth linking to the Reuters nonsense whilst just ignoring scientific facts and trying to dispute them with actual evidence.

Scientist: Why do you believe that?

Vogt: ITS IN THE BLOODY DAILY MAIL!!
 
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Trish said:
I don't usually bother with Sharpe on Twitter any more. I decided to have another go.

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I mean, he keeps insisting his research is on CFS and that it's different from ME (then turns around and says it's the same but whatever). Might as well make sure this is understood in the context of guidelines on ME. A primary research insists that it should not apply to ME. This seems relevant when this research is a central pillar to the current guidelines.

Actually, this merits being taken further. They really do say that. And the opposite. And everything in between. So it's quite critical to settle on what it means, what the NICE guidelines are for, whether it is officially the same (some people say is not a valid argument) and how can research on CFS (though actually idiopathic chronic fatigue) should apply to ME when the researchers insist it is not the same (though it depends when you ask them) and isn't even the defining symptom of ME.

Because maybe I'm a stickler for the scientific method, but it's really important for science to be consistent. This seems really important for the NICE committee because this thing is all over the place, vague and ambiguous, which are definitely not good traits for clinical guidelines.
 
Three Chord Monty said:
Oh boy.



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LOL

You can just imagine the tinfoil gears working in Vogt's mind, trying to understand if Laws is *gasp* one of them! "Can there possibly be any flaw in this ideological model? No, impossible, inconceivable. It must be the world that is wrong. The model is perfect, a diamond in the rough."

I wonder if he's seeing ME activists in his room right now. Under the floor? Under the bed? Waiting behind his front door? Maybe we got to the cat and it's just waiting to make him trip and fall!
 
rvallee said:
he keeps insisting his research is on CFS and that it's different from ME
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Trudie Chalders account of the history, does not even mention ME, even though 'In the summer of '89...' that is what it was called in the UK.
'Chronic fatigue syndrome' was barely known and not officially used as a 'replacement' name until 1996 in the UK. The Fukuda diagnostic criteria were not published until 1994.

This was the diagnostic criteria for a study published in 1990
"Diagnostic criteria
The diagnosis of ME was made by a neurologist(LJF) and was based on all of the following
symptoms being present for over six months (mean duration of illness was 60 months)
following a febrile illness:
persistent or relapsing debilitating fatigue, myalgia which increases following exercise,
poor concentration and memory."
https://jnnp.bmj.com/content/jnnp/53/3/247.full.pdf

So what exactly were they researching back then if it wasn't ME (or Post Viral fatigue syndrome)?

Plus how can we forget this headline:
"If my team’s research on ME is rejected, the patients will suffer"
Peter White

they need to make up their minds and stop constantly trying to rewrite history to justify their actions.
 
Why is he so ravingly mad, this Vogt-guy? Why does this true activist on a crusade for pseudoscience bother so much. At least for a decade now he refuses to discuss any of the obvious problem and flaws at the ME-field, but still is some kind of representative standing up for science? It’s only politics and it harms patients.

The fact is this guy didn’t manage tinnitus at all for a while. He was lousy, cathastophizing constantly, having a whole lot of wrong illness beliefs. Then he eventually figured it out and got better, learnt to live with this thing that can be annoying but not that much more.

He himself finally “saw the light”, so to speak. Good for him. Then I would say that ME-patients in general do manage way bigger challenges, have done it for long, but they are still horribly ill. That’s a fact. We can’t solve ME like Vogt solves he’s tinnitus.

But for weird reasons, he uses he’s completely different personal anecdote to what, I dont know? Push pseudoscience, maybe just for strange personal respons, who knows? Hard to figure out this guy, but he’s clearly a pitty and very angry man.
 
chrisb said:
It's interesting to note that the three authors of that paper quoted were at the National Hospital, Queen Square. Isn't that where SW was.
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Yes, apparently it was these neurologists who got him into ME in the first place.
Well known interview:
In 1987, I went to work as a trainee psychiatrist at the National Hospital for Neurology in Queen’s Square in London. One of my jobs was to see a group of patients who were not popular with the neurologists who ran the place. The patients had symptoms that might have had a neurological explanation — muscle pain, inability to walk, being unable to think clearly, feeling exhausted after the most minimal physical or mental exertion — yet the neurologists thought that they were at best suffering from depression or at worst swinging the lead. They found it irritating that the patients insisted they had an illness called ME (myalgic encephalomyelitis).
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https://www.spectator.co.uk/2011/08/mind-the-gap-3/

eta: note that paper was published three years after Wessely started at the hospital.
 
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I'm bringing the paper published by Michael Sharpe and colleagues [1] to your attention today in the interest of balance and peer-reviewed 'right to reply'.

The Sharpe paper concerns the PACE trial, the study which reported that "when added to specialist medical care, cognitive behaviour therapy and graded exercise therapy were more effective in improving both fatigue and physical function in participants with CFS [chronic fatigue syndrome], than both adaptive pacing therapy and specialised medical care alone."
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https://questioning-answers.blogspo...ial-for-chronic-fatigue-syndrome-a-reply.html
 
"Recovery. As per other discussions (see here), most people would characterise recovery as a complete remission of symptoms and/or return to typical functioning. If you're not going to use this description, don't use the word recovery. Use something else instead. Indeed, use 'partial remission' or 'improvement' if you need to but don't call anything less than the complete remission of symptoms 'recovery'."
 
Sly Saint said:
Trudie Chalders account of the history, does not even mention ME, even though 'In the summer of '89...' that is what it was called in the UK.
'Chronic fatigue syndrome' was barely known and not officially used as a 'replacement' name until 1996 in the UK. The Fukuda diagnostic criteria were not published until 1994.
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I don't know..."CFS" may not have been well known, but it was only three years from the US CDC Holmes criteria to Sharpe's Oxford criteria. I can't remember where or when but I have heard that either Wessely, people in his orbit, or both, were in touch with Stephen Straus (and perhaps others, say someone like Peter Manu) going back to the late 1980s. I have no idea if there's any documentation on that but it's fairly plausible there was correspondence. Wessely's paper on ME and Neurasthenia (Old wine) was published early 1990, so written some time in 1989, mentions 'chronic fatigue' liberally, and briefly references Holmes. So...I'd doubt that someone like Chalder could plausibly claim that she came into the field with "CFS" established to the point where she wouldn't even mention ME--that's ridiculous. However, while it may have been only in select academic/psych circles, I do think they can claim they were using the term for some 30 years now.
 
Three Chord Monty said:
I'd doubt that someone like Chalder could plausibly claim that she came into the field with "CFS" established to the point where she wouldn't even mention ME--that's ridiculous
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quite.
Doing a bit more of the transcript and just popped back with this one:
So back to CFS then which is at the more severe end of that spectrum of fatigue, if you like, and back to the Maudsly and Kings.

I worked with Simon and Alicia Deal, and Isaac actually, he was involved in this, we conducted a randomised controlled trial where we compared CBT as we had piloted at the National Hospital for Neurology, and compared CBT with an active control which was relaxation.
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So what changed in our study. Well the thing that changed and seemed to be associated with a better outcome was the belief that exercise should be avoided and that doing less helped fatigue. That was the thing that changed. What didn’t change was their belief in the fact that they had something physically wrong with them.
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we don't stand a chance as long as this stuff is being preached to medical students.

something for the NICE guidelines folk
@Keela Too @adambeyoncelowe @Jonathan Edwards
 
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Sly Saint said:
quite.
Doing a bit more of the transcript and just popped back with this one:



we don't stand a chance as long as this stuff is being preached to medical students.

something for the NICE guidelines folk
@Keela Too @adambeyoncelowe @Jonathan Edwards
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Here's their paper:

J Psychosom Res. 1998 Jul;45(1):77-83.
Illness beliefs and treatment outcome in chronic fatigue syndrome.
Deale A1, Chalder T, Wessely S.
Author information

Abstract
Longitudinal studies have shown that physical illness attributions are associated with poor prognosis in chronic fatigue syndrome (CFS). Speculation exists over whether such attributions influence treatment outcome. This study reports the effect of illness beliefs on outcome in a randomized controlled trial of cognitive-behavior therapy versus relaxation. Causal attributions and beliefs about exercise, activity, and rest were recorded before and after treatment in 60 CFS patients recruited to the trial. Physical illness attributions were widespread, did not change with treatment, and were not associated with poor outcome in either the cognitive-behavior therapy group or the control group. Beliefs about avoidance of exercise and activity changed in the cognitive behavior therapy group, but not in the control group. This change was associated with improved outcome. These findings suggest that physical illness attributions are less important in determining outcome (at least in treatment studies) than has been previously thought. In this study, good outcome is associated with change in avoidance behavior, and related beliefs, rather than causal attributions.

PMID:
9720857
[Indexed for MEDLINE]
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Last bit of Chalder for today (still not finished) and very relevant here as it is about the PACE trial.
whatever operational criteria we used for defining the syndrome the effects were the same. The treatments we found were safe given as described in the manuals and they are all downloadable from the website. And the bottom line really was that pushing the limits was better than staying within the limits as one would do with Adaptive Pacing therapy.


So you’d think that this would be good news.

[gasps from audience]


But these were some of the reactions of some of the M.E. groups.


“When is the Lancet going to retract this ?? study”

“There are deep problems with the credibility of the trial”

“We find the trial results extremely worrying”


And this is a classic

“That the trial shows that the therapies are safe and effective is hugely damaging”
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note she finally mentions ME but there was no previous explanation of what M.E. is or how it relates to CFS.

So the Lancets response was “the evidence might suggest that it was the critics of the trial who might have formed their opinions first, ignoring the findings of rigorously conducted research”.

So why the anger, and the anger by the way continues to this very day with scores and scores of freedom of information requests and what have you.
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Well I think it’s because a psychological treatment and even graded exercise therapy in terms of
a certain group of people, they feel that it implies that the condition is psychological, it might even imply that the person is lazy which clearly it doesn’t. And if people get better it means that the problem wasn’t real in the first place and it certainly wasn’t organic in nature.
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there is more but that's quite enough for me for today.

eta: that last line by Chalder actually shows their overall intent which goes back to the Gov and Insurance companies being so keen to adopt the BPS model in the first place.
https://www.s4me.info/threads/government-and-insurance-companies-establishing-the-bps-model.2319/
 
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We were actually invited to write a reply to this, which Tom Kindlon and I did. I'm surprised it hasn't come out at the same time as the Sharpe response. This is very distressing, as obviously, its much better to be able to reply at the same time. Hopefully, because the journal is fully online, the reply can be linked as soon as its released.

There was some confusion about the process we were supposed to follow. We were invited to reply, and send the manuscript to the editor via email, which we did. It was reviewed and we were asked to make a few small changes. I was then told the plan had changed, and the Sharpe piece and our reply would now be published as separate pieces. I was asked to resubmit my reply via the online portal (the usual way to submit a new article). I wonder whether what they meant is that it would also go through the review process - hence the delay?

I see absolutely no reason why I shouldn't share the reply with you all now. Heres a pdf. As soon as I get a chance, I'll reformat it into a prettier version and update the file here.

Moderators note: the file can only be accessed by forum members.
 

Attachments

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"Clearly, it is not appropriate to loosen the definition of recovery simply
because things did not go as expected based on previous studies. Researchers need to be open to the
possibility that their results may not align with previous findings, nor with their own
preconceptions. That is the whole point of a trial. Otherwise, the enterprise ceases to be genuinely informative, and becomes an exercise in belief confirmation."
 
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