Rehabilitative treatments for chronic fatigue syndrome: long term follow up from PACE trial

[Sean]

However as many had received CBT or GET after the trial, it does not tell us that these treatments have as good a long term outcome as CBT and GET.’

Individuals who received APT or SMC alone displayed improvement in fatigue and physical functioning irrespective of receiving further treatment, such that no difference in outcomes was evident between any of the original treatment groups at long-term follow-up.

How the hell do they reconcile those two statements?

Cognitive dissonance, writ large, or what?

 

[alex3619]

The farce that is PACE continues. I find it disturbing. What I find more disturbing is that more are not waking up to the farcical claims and statements. What is wrong with the medical profession at large, or with media? (Somewhat of a rhetorical question, I know.)

Doctors like to speak of evidence based medicine, but it is clear that when they want evidence they generally do not look for it but look for what someone has interpreted the evidence is, without scientific justification. If this is modern evidence based medicine, the entire endeavour needs to be overhauled or scrapped. Its failed.

We know doctors can get it. We know that they can, in principle, know how to read a scientific paper. We know they can be rational. We can cite numerous exemplars.

I do think we need evidence based practice, a different movement. I also think evidence based medicine is becoming ever more of a farce.

 

[worldbackwards]

Just woken up to the thought: what kind of trial lets it's patients in one arm use treatments in the other arms before the observation period is finished? Answer: a hopelessly shambolic one. Not that you'd expect any different but that really is breathtakingly bad.

 

[Marky90]

Shocking.

The claims made are simply dead wrong.

One has the right to answer infactual articles in the u.k? (and what do you call this right, I forgot)

 

[worldbackwards]

One calls it pissing in the wind.

 

[Sidereal]

This is surreal. There is no statistically significant difference between the 4 treatments at 2.5 year follow up. The paper itself admits this. Yet we get a totally fraudulent press release and newspaper articles claiming that CBT/GET cures ME.

 

[Sean]

Straight fraud, and we should not hesitate to describe it as such. It just demonstrates how complicit and captured the so called 'professional' media have become in this society wide con job.

 

[Marky90]

This is surreal. There is no statistically significant difference between the 4 treatments at 2.5 year follow up. The paper itself admits this. Yet we get a totally fraudulent press release and newspaper articles claiming that CBT/GET cures ME.

just totally sickening :/ @Jonathan Edwards do one not have the right to reply in the u.k?

 

[Sidereal]

Straight fraud, and we should not hesitate to describe it as such. It just demonstrates how complicit and captured the so called 'professional' media have become in this society wide con job.

The newspapers are like the Pravda. Copy-paste straight outta the press release and the investigators' quotes. These "science journalists" didn't see fit to even read the abstract, let alone the whole paper. It really is fraud what is being reported, we should not mince words. Even by Pace trial standards this is bad because at least in previous papers they manipulated the outcomes in a way that gave statistically significant results whereas this time round there is nothing yet still being reported as CURE.

 

[Sidereal]

Just woken up to the thought: what kind of trial lets it's patients in one arm use treatments in the other arms before the observation period is finished? Answer: a hopelessly shambolic one. Not that you'd expect any different but that really is breathtakingly bad.

Well, this is normal practice in clinical trials once the randomised phase is over. So the Pace trial lasted 52 weeks. This study is a mailed survey long after the trial had finished, a naturalistic long-term follow-up to see how things are 2.5 years after treatment. In all trials once the randomised phase is over clinicians and patients are allowed to avail of whatever treatments they want. That's normal.

 

[Hutan]

A tv documentary on the Pace trial and this latest instalment of idiocy is desperately needed and could make compelling viewing.

Even just reading those comments that @Tom Kindlon has been posting about the effects of GET has been heart breaking. Imagine seeing a series of people telling those stories. Soundbites from @Jonathan Edwards; Fluge or Mella talking about the need to listen to patients and have curiosity....

[Edited to add, as well as of course appearances from Tom, Graham, other long term fighters for ME]

Maybe David Teller and his associates have some contacts?

 

[user9876]

Did the authors have evidence of this claim that the patients later sought out GET and CBT, or is this just supreme arrogance? "Our treatment is the only one that works because we say so, so patients who did not get our treatment during the study must have gotten it later if they improved. I mean, how else could they have improved if they didn't get GET and CBT?"

They give numbers in the appendix but as far as I have seen not motivations (i.e. to justify the sought out comment).

 

[adreno]

Tell it to all the people who got maimed by this apparently benign bit of moderately helpful treatment and are now permanently bedridden.

And all the millions of us not receiving any research funding or treatment

 

[Cheshire]

FWIW

'Best treatment' for Chronic Fatigue Syndrome / BBC
People who have Chronic Fatigue Syndrome or ME might have their conditions improved by exercise and Cognitive Behavioural Therapy (CBT), according to new research published in journal Lancet Psychiatry.

Report co-author Professor Michael Sharpe of Oxford University said that they found the benefits of carefully graded exercise and CBT persisted for two years after treatment.

“This, in terms of evidence based treatments, is the best show in town,” he told the Today programme.

But the treatment, he said, was not a cure, and he told presenter Justin Webb that people who suffer from the condition may struggle to get access to the treatment.

“The risk is that this kind of condition, these chronic conditions, will not be seen as a priority” by the NHS, he said.

http://www.bbc.co.uk/programmes/p036fnz0

 

[adreno]

The farce that is PACE continues. I find it disturbing. What I find more disturbing is that more are not waking up to the farcical claims and statements. What is wrong with the medical profession at large, or with media? (Somewhat of a rhetorical question, I know.)

I agree. This is very disturbing. The world is run by morons.

 

[adreno]

Effect size = 0. Authors: "This study was a huge success!"

 

[Marky90]

Sometimes i wonder if people find ME/CFS too disturbing and scary, and then a protective mechanism is to insist we can train or think our way out of it. And then if they just keep referencing studies without actually reading them, they think they are right. They really sincerely do.

 

[adreno]

Sometimes i wonder if people find ME/CFS too disturbing and scary, and then a protective mechanism is to insist we can train or think our way out of it. And then if they just keep referencing studies without actually reading them, they think they are right. They really sincerely do.

Part of the problem, but it goes for other types of research too. They are just parroting press releases. Keyboard monkeys.

 

[ukxmrv]

Sharpe was on Radio 4 this morning just before the 7am news. Horrible way to wake up.

The desentisation program is working though - I just laughed and laughed

Here's a link to Radio 4 it starts around 53:00. Sorry that may not work outside the UK

http://www.bbc.co.uk/programmes/b06kj00k

I had forgotten how very creepy Sharpe sounds

 

[TiredSam]

We know doctors can get it. We know that they can, in principle, know how to read a scientific paper.

@alex3619 I'm afraid I'm not sure of that at all. I'm currently reading "Risk Savvy" by Gerd Gigerenzer, which I can throughly recommend. He discusses how many doctors practise defensive medicine, don't understand health statistics, and pursue profit instead of the patients' best interests. I always used to assume that good doctors were people who respected and understood the science, but it seems there is a gulf between biologists / researchers and doctors, which goes right back to what they are taught / not taught as students.

One has the right to answer infactual articles in the u.k? (and what do you call this right, I forgot)

@Marky90 I've spent the last two days standing in the classroom with a blank mind when students ask me questions, not even a mental thread to pull on to get the information / word they're asking for, no point in me even trying to think about it. So I'm very proud to actually know something this time - "factually incorrect" is what you're looking for. I was teaching a lawyer yesterday and couldn't remember the words "on probation" or "legacy" - this morning I didn't know the word "extensive". How long I can carry on as a teacher like this I really don't know, I live in constant fear of my cover being blown.

From Joh Cohen's Science article:

In the follow-up, a team led by psychiatrist Michael Sharpe of the University of Oxford in the United Kingdom sent questionnaires to 604 of the trial participants and asked them to self-rate their health. The 481 participants who responded reflected a statistically valid sample of the patients who received the four interventions.

This could reflect a statistically valid sample, or losing track of 20% of the sample could mean that 124 patients wanted nothing further to do with the study, or had died.

The authors suggest that this is because the people in the ineffective groups later decided to seek out graded exercise and cognitive behavior therapy.

Any evidence for that, or is it just based on wishful thinking / bullshit speculation by the authors, which they felt justified in throwing in with their "evidence"?