A general thread on the PACE trial!

It all comes down to chronic fatigue as a synonym of CFS which they say is the same as ME. Most people would like more energy and these sort of courses may help people reorganise their life.

But we are right to question what good they are for post infectious, sudden onset, neurological ME. If they cannot discuss that type, which is the most distinctive, they have no hope of understanding anyone else.

They equate CFS with fatigue so nothing they say has any relevance for us. The problem is they tell other doctors that it is just fatigue.

With any other disease I expect my doctor to have some idea what my symptoms are. If I go with migraine he thinks headache, if I go with an ulcer he thinks gut. If I go ith ME he thinks fatigue which is not what I have. I have fatiguability, a totally different thing, pain, neurological problems, dysautonomia, balance problems, on and on. No wonder we find it impossible to have a dialogue.
 
JohnTheJack said:
What we have learnt from the research and our experience is that by embarking on an individualised programme of graded exercise or activity, people can manage symptoms, improve their health and engage in more activities than they were at the start of treatment.
That is very interesting.

Even if it's true that 'people can manage symptoms, improve their health and engage in more activities than they were at the start of treatment', no one knows what is actually happening.

Indeed, Bavinton's choice of words is revealing. She is specifically not saying that they are treating the illness.

I've always thought that this model was based on something, that Wessely and White always saw some improvement in their patients and that some of those patients really did have ME. But that this improvement was not treatment, but merely help in managing the effects of the symptoms and in maximizing what patients could do within the constraints of the illness.

I read Bavinton as saying precisely that.
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"What we have learnt from the research and our experience is that by embarking on an individualised programme of graded exercise or activity, people can manage symptoms, improve their health and engage in more activities than they were at the start of treatment".

It also sounds like this is very possibly not GET at all, but simply pacing ... and maybe helping people transition towards the pacing strategy that works best for each individual. This is what most people will have done here in the past, and homed in on what works best for them. I'd really like to know exactly what they mean by "graded exercise" in that statement, because it could just be a very loose generalized statement, tarted up to sound like GET. Are these people who do so well on it really ramping up their activity levels by 10% per whatever-it-is? They do not say GET ... is that a conscious choice of words?
 
Barry said:
"What we have learnt from the research and our experience is that by embarking on an individualised programme of graded exercise or activity, people can manage symptoms, improve their health and engage in more activities than they were at the start of treatment".
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And it's weird that this is presented as a good thing. It's not. Not even close. Especially for something as meaningless as "more activities". So patronizing. We're not f-ing children who need to do "more activities" FFS, many of us can't even cook a meal. We need to work and function like healthy adults.

For all the gripes people have about drugs, standardisation is the most desirable feature: one form factor deliverable to all, with minor variation usually based on body weight. If you have to customize every treatment program then you won't be able to scale, the costs are simply too high. This reeks of shamanism and general quackery.

Not that it means anything anyway. There is no such individualized program with GET or similar types. It's do more and ignore your symptoms. There is no secret sauce, no skill that grows with experience. It's all a sham.
 
Barry said:
"What we have learnt from the research and our experience is that by embarking on an individualised programme of graded exercise or activity, people can manage symptoms, improve their health and engage in more activities than they were at the start of treatment".

It also sounds like this is very possibly not GET at all, but simply pacing ... and maybe helping people transition towards the pacing strategy that works best for each individual. This is what most people will have done here in the past, and homed in on what works best for them. I'd really like to know exactly what they mean by "graded exercise" in that statement, because it could just be a very loose generalized statement, tarted up to sound like GET. Are these people who do so well on it really ramping up their activity levels by 10% per whatever-it-is? They do not say GET ... is that a conscious choice of words?
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Yes, I agree.
 
JohnTheJack said:
What we have learnt from the research and our experience is that by embarking on an individualised programme of graded exercise or activity, people can manage symptoms, improve their health and engage in more activities than they were at the start of treatment.
That is very interesting.

Even if it's true that 'people can manage symptoms, improve their health and engage in more activities than they were at the start of treatment', no one knows what is actually happening.

Indeed, Bavinton's choice of words is revealing. She is specifically not saying that they are treating the illness.

I've always thought that this model was based on something, that Wessely and White always saw some improvement in their patients and that some of those patients really did have ME. But that this improvement was not treatment, but merely help in managing the effects of the symptoms and in maximizing what patients could do within the constraints of the illness.

I read Bavinton as saying precisely that.
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I still struggle to understand how they say GET works! To me it doesn’t make any logical sense.
 
In 1986 Melvin Ramsay published his book on ME where he states categorically that exercise makes ME worse by definition and so by definition if it cures people they cannot have had ME.

Around the same time the ME Association had articles talking about the ceiling effect in ME where people can maybe get a bit better, a bit fitter with gentle exercise but they can never get beyond a certain point.

Thirty four years and they are still not listening.
 
rvallee said:
I can't remember seeing it posted here but this graphic speaks at least 10,000 words.
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The thing I don't like about this is the working age average. The working age catagory includes about 22% of people with health problems and as the median was around 95 with the median being 100 for people without health problems. So the average being 88 seems to downplay normality a bit.
 
Adrian said:
The thing I don't like about this is the working age average. The working age catagory includes about 22% of people with health problems and as the median was around 95 with the median being 100 for people without health problems. So the average being 88 seems to downplay normality a bit.
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Pretty much the kind of issue a genuine "skeptic" would notice, leading to them understanding that it is underselling how fraudulent the PACE claims are. Exactly the kind of question an inquiring mind would ask, alongside "what do you mean by 'recovered'?"

If only professionals skeptics were genuine skeptics and peer review actually did, you know, review. How great would that be?
 
Barry said:
View attachment 8001

And there we have it :)
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Unfortunately, substitute Willy for Kate:
928634e83633c7bf985c9612e8782a0ecebcf1afc1994d427ba8f4c4f4a6e049.jpg


Kelland knew what she signed up for. She's fine with the lying and the dying it leads to.
 
I just got re-annoyed by this bullshit statement from the University of Oxford promoted at the Science Media Centre:

A spokesperson for University of Oxford said:

“The PACE trial of Chronic Fatigue Syndrome treatments was conducted to the highest scientific standards and scrutiny. This included extensive peer review from the Medical Research Council, ethical approval from a Research Ethics Committee, independent oversight by a Trial Steering Committee and further peer review before publication in high-impact journals such as The Lancet.

“The allegation that criteria for patient improvement and recovery were changed to increase the reported benefit of some treatments is completely unfounded. As the study authors have repeatedly made clear, the criteria were changed on expert advice and with oversight committee approvals before any of the outcome data was analysed.

“Oxford University considers Professor Sharpe and his colleagues to be highly reputable scientists whose sole aim has been to improve quality of life for patients with ME/CFS. While scientific research should always be open to challenge and debate, this does not justify the unwarranted attacks on professionalism and personal integrity which the PACE trial team have been subjected to.”
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https://www.sciencemediacentre.org/...-psychologys-special-issue-on-the-pace-trial/

There's a lot to be annoyed with there, but "the criteria were changed on expert advice and with oversight committee approvals before any of the outcome data was analysed" - what expert advice and oversight committee approvals do they think there was for the recovery criteria changes? Also, why is it being claims that this occurred before any of the outcome data was analysed?

Is there any way we should be pushing back against this BS?
 
Esther12 said:
Also, why is it being claims that this occurred before any of the outcome data was analysed?
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@dave30th (I think it was David) in one of his fairly recent blogs made clear that given everything was unblinded, the formal analysis is a massive red herring in this regard, because it would have been blindingly obvious (pun intended) to all those running the trial which way the outcomes were trending waaaay before the formal analysis was done. Which is one of the best reasons ever for sticking to the protocol that was written before the trial started! It's a key reason for doing things that way.
 
Barry said:
@dave30th (I think it was David) in one of his fairly recent blogs made clear that given everything was unblinded, the formal analysis is a massive red herring in this regard, because it would have been blindingly obvious (pun intended) to all those running the trial which way the outcomes were trending waaaay before the formal analysis was done. Which is one of the best reasons ever for sticking to the protocol that was written before the trial started! It's a key reason for doing things that way.
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True... but also, it looks to me as if the 2013 PACE recovery criteria was decided upon after they had been analysing data for their 2011 Lancet paper. They've always been evasive on this, but have more recently been describing their recovery results as a 'secondary analysis', and QMUL's 2011 response to the FOI request for the protocol specified recovery criteria results states that these results are exempt from the FOIA because they're due to soon be published in an academic journal - if that's true then the decision to dump that criteria must have come after the 2011 analyses. Also, there's no mention of the 2013 recovery criteria in the PACE statistical analysis plan published later in 2013, and no mention of it in any of the TSC/TMG mintues that have been released.
 
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