Michael Sharpe skewered by @JohntheJack on Twitter

What I meant was White was using the line,"recovery from the current episode" in typical doublespeak to cover all corners. How long is an episode? What is current? Is an episode a crash or the disease itself. Is managing an "episode" something that professionals have to do because patients "have a certain personality type"? etc

When a massive spotlight is shone upon them they have these numerous statements they have made over the years they can point to to claim the opposite of what they really meant and use them as get outs.

"We were managing the disease the whole time and never claimed we were not".

Just in the same way they are now trying to claim pacing as a fall back by cunningly changing the definition of GET when it suits them.

 

Can the man be so stupid as to say this? Does he assume everyone else is stupid enough to take his word for it? The Dodo in the Pitt Rivers has more sense than this.

 

Well, RH is.

 

Well he tweeted previously that people should, "go google the authors of the reanalysis paper to find out how objective they are".

As if by entering their names into google it would take one directly to an objective alert page. Perhaps a Wikipedia type 1984 warning page.

Its seems pretty clear that he doesn't understand the difference between objective and bias, which was probably the point he was trying to make.

A person can be neither objective or subjective, their conclusions and methods however can be upon scrutiny.

He also tried to claim that the reanalysis authors deliberately mislead to come to a desired conclusion, missing the fact that they objectively used the original protocol of the original investigators before it was changed it in dubious circumstances.

Therefore due to an objective analysis of his behaviour my understanding is that he is the Dodo.

Bias declared...I have previously believed him to be stupid.

 

Even a perfect study has risk of bias. Its intrinsic to all science, and all investigation. Science is about decreasing and accounting for bias, which is why we have things like randomisation, double-blinding, and controls.

Randomisation on PACE was probably OK, but the cohort being randomised was already a highly biased cohort. So randomization might not have done much.

PACE was not even single blinded, in fact its anti-blinded as they used newsletters and communication that completely operates against the principle of blinding.

Controlled? Not placebo controlled, not even a no treatment arm, though the standardised medical care would be very close to no treatment. Yet they ignore this arm in the long term follow up, deliberately ignoring no improved benefit over their control from the CBT and GET. No benefit at followup is one way of identifying bias in the basic study ... its one of the reasons long term follow up is done.

Mathematically unsound manipulation of data (SD in SF36PF), with knowledge that this was so, is a MAJOR bias. Its deliberate. This one thing alone demolishes every recovery claim, because it demolishes their claim to a return to normal.

 

It's slightly different in the US. The term "Graded Exercise Therapy" is largely abandoned, exercise is almost never touted as a cure, and "false illness beliefs" is rarely mentioned. But increased exercise is still regularly promoted. Here's how the CDC weasel words it:

Again, that idea that patients are deconditioned and would benefit from increased exercise. It's "GET-lite", all the exercise, just without the false illness beliefs and cure claims.

In place of "false illness beliefs", patients now must "learn to listen to their bodies" to overcome deconditioning. Weasel words.

 

Except of course that the Weasel himself said in 1989 that there is clear evidence that PWME are not deconditioned. Their muscles have been tested and they work fine (by Andrew Lloyd and Richard Edwards). So PWME do not need to exercise. Somebody seems to have forgotten this along the way!

 

So how come he said PACE to be a thing of beauty, given PACE was all about helping people overcome their false illness beliefs and so recondition themselves. This is like jumping between parallel universes.

 

Well he jumped between two universes in a single paragraph in the 1989 paper, so he is pretty consistent. He was justifying something, I forget what. His first reason was the dangers of not exercising - causing deconditioning. And his fifth reason was that PWME are not deconditioned. He didn't seem to notice his reasons cancelled out. This is the level of intellect we are dealing with.

 

MS retweeted this.
https://twitter.com/user/status/1000457766685888512

Various people have responded with impressively restrained explanations. I thought this one was a particularly good summary rebuttal for those who follow Sharpe and only know ME/CFS through his posts, to be exposed to (if they read the thread),
https://twitter.com/user/status/1000761887963873281

https://twitter.com/user/status/1000763818983743488

https://twitter.com/user/status/1000765525515960321

https://twitter.com/user/status/1000766415824138240

 

that statement about deconditioning would be worth having as it is being used as an argument by many people.

 

I must admit when I read about Merryn Crofts I was expecting Vogt to crawl out from under his stone, given his previous. Excellent and restrained response from Homeslice.

 

It's in the original paper laying out the plan to use CBT:

J R Coll Gen Pract. 1989 Jan;39(318):26-9.
Management of chronic (post-viral) fatigue syndrome.
Wessely S, David A, Butler S, Chalder T.

The full text is free I am pretty sure. On page two he is giving reasons why it is a mistake to advise rest.

The evidence for no significant loss of muscle function is well known and comes from studies in the 1980s. How good it is I do not know, but it is not exactly hidden away.

So GET has no rationale - never did have. It is purely a manifestation of the familiar problem for the onlooker of being faced with someone disabled - needing to have it 'put right', regardless of whether or not it helps the person who is disabled.

The root of the issue is that the BPS model, rather than being based on science is based on a rationalisation of the popular prejudice of the man and woman in the street.

 

Do you know which paper that was? Just being pedantic, because your first sentence sounds like cautioning against deconditioning as a consequence of ME, which in itself would not be the same as saying PwME inevitably were deconditioned. No fan of SW at all needless to say, but I'd want to understand exactly what it was he was saying.

Edit: Just seen your post with link.

 

Agreed but if the fifth point is that they turn out not to be deconditioned despite ME then the first point is a bogus argument. And it is only the first point that would have made sense anyway!

 

I know I'm being pedantic here, and SW I have not time for, but here in s4me I think being pedantic is OK .

The last sentence to me is saying that PwME in effect have healthy muscles, so whatever their underlying problem is, it is not a muscle problem. The first sentence to me is saying that disuse and inactivity can cause deconditioning in any kind of muscle, healthy or otherwise. So I'm not sure those two sentences necessarily contradict. The rest of it is crap of course, being it witters on about PwME's fear of exercise etc.

 

Yes, I do agree with that.

 

Yes, having read @Jonathan Edwards' further post, is is clear that although the two sentences do not contradict each other, it does contradict the whole premise the paper is based on.

 

I am unclear about the exact meaning of deconditioned and "normal muscles". Can muscles not be deconditioned despite being normal? Is deconditioning different from lack of fitness, or does it merely indicate a certain severity of lack of fitness?