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.

 

"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?

 

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.

 

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.

 

I can't remember seeing it posted here but this graphic speaks at least 10,000 words.



The whole thread in which it was published is awesome but Twitter is down at the moment so can't post.

 

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?

 

https://twitter.com/user/status/1154120103962845184

 

https://twitter.com/user/status/1159960991528042496

 

And there we have it

 

Unfortunately, substitute Willy for Kate:


Kelland knew what she signed up for. She's fine with the lying and the dying it leads to.

 

Very difficult to believe Kelland is so ignorant that she did not realise she was misleading people.

 

I just got re-annoyed by this bullshit statement from the University of Oxford promoted at the Science Media Centre:

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?

 

@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.

 

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.

 

Nope. Given the piss-poor justifications provided in their paper it seems fair to suspect that it does not exist.