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Why patients with CFS/ME improve or deteriorate with graded exercise therapy

Sasha

Fine, thank you
Messages
17,863
Location
UK
Are we sure they didn't ask, but just decided not to report the results?

I'm not aware of a published protocol but it wasn't mentioned in the methods section of the long-term follow-up paper.

It would also have been a great opportunity to ask about employment, benefits, lost hours, etc. rather than the purely subjective measures that they used. But at that point it was no longer a randomised trial so maybe the biggest surprise is that they bothered following up at all.

What a waste of £5m of taxpayers' money - blowing the randomisation, as a deliberate choice.
 

Comet

I'm Not Imaginary
Messages
693
Why patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis improve or deteriorate with graded exercise therapy.

A. Cheshire, D. Ridge, L. Clark, P. White

Journal of Psychosomatic Research June 2016.

...

Results: Participants generally found GET challenging, especially during initiation, as participants had to wait considerable time for any benefit. The deteriorated group reported experiencing more barriers to GET, including a worse exacerbation of symptoms in response to GET, which interfered with their life commitments (e.g. work, caring duties). They also reported greater interference with GET from comorbid conditions and other things happening in their lives. Additionally, they had had CFS for considerably longer than the improved group. The improved group on the other hand reported more facilitators to doing GET (e.g. using other therapies), and were more likely to report exceptionally high levels of motivation. Paradoxically, GET engagement could be supported by having worse levels of CFS/ME, as participants felt too ill to do activities that could distract them from GET.

My bold.

One interpretation of this might be that in the early stages of ME/CFS, one still has hopes that the trusted medical community wants to help and make you better, so you're pretty motivated to follow instructions to get your life back. Plus, you can still do stuff, even if limited.

But, after years of illness, one realizes the unfortunate reality that just because one can do stuff at the beginning of one's illness doesn't mean that one should. As we progress, we get more ill, less able to tolerate exertion and are far less resilient.

In my eyes, this proves why GET is a bad idea, since improvements, if any, are so minor and don't seem to last. But maybe I'm misinterpreting.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
They always denied that CFS patients deteriorated by CBT / GET. With this study they admit their previous lie.
Yes, this study does raise questions.

Cheshire et al. said:
Method: This qualitative, one-to-one interview study was situated within the GETSET Trial. A sub-sample of patients were stratified into improved and deteriorated and recruited: 9 were better, 10 were worse (according to Clinical Global Impression (CGI) scale).
There were 218 participants in the GETSET study which means that at least 4.6% deteriorated according to CGI scores.

Edit: Actually, if they only investigated participants from the GETSET intervention arm (n=107) for this study then the percentage could be roughly double (i.e. 10 /107 = ~10%). And this is just a minimum, not a total.
 
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Jonathan Edwards

"Gibberish"
Messages
5,256
I am getting used to the surreal but even the journal title gave me a double take. There was a time in science when people thought a bit more about choice of words. Presumably psychosomatic research is what looks for all the world to be real physical research but is in fact just an idea that some research has been done in the mind of the researcher. The best bit seemed to me to be that they found the people who got worse were the ones who tended to get worse. But they spoilt it by assuming that, and also in other cases getting better, was causally linked to the treatment, without any evidence.
 

Keith Geraghty

Senior Member
Messages
491
my first thought was if its only 19 interviews from a trial sample - its starting off on shakey ground.

my second thought was the London group that work in this area have published many times talking on 'perfectionist traits' among CFS patients - with boom-bust behaviours; thus this new idea that a sub-set of CFS patients are highly motivated and a sub-set are not, just shows a level of narrative creationism at work: no doubt the biases of the researchers involved to 'define' differences artifically.

its poor science on many levels. Surprised it got published so quickly, I think the paper had a two month turn around from submission - but I cant see full paper only abstract and Im on sciencedirect.
 
Messages
2,087
The best bit seemed to me to be that they found the people who got worse were the ones who tended to get worse.
I thought you were exaggerating but no they actually said that...
The deteriorated group reported experiencing more barriers to GET, including a worse exacerbation of symptoms in response to GET,

Why would an exacerbation of symptoms in response to GET be described as a barrier instead of an adverse reaction ?

Why would using other therapies be described as a facilitator to GET ?

The most sinister part of all has to be the insinuation that exceptionally motivated people can benefit from GET, so if you don't benefit you are just not motivated enough.


But what about this for just plain nonsense
Paradoxically, GET engagement could be supported by having worse levels of CFS/ME, as participants felt too ill to do activities that could distract them from GET.

So the patients whose ME/CFS is worse, spend whatever effort they have in doing GET, (because that's what will make them better) only they can't do anything else except GET, because they are too ill.

How stupid would you have to be to perform GET just so you can perform GET.

ETA I should add, how stupid would you have to be, to believe GET can work when there are patients doing GET but they are to ill to do anything except GET.
 
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worldbackwards

Senior Member
Messages
2,051
The most sinister part of all has to be the insinuation that exceptionally motivated people can benefit from GET, so if you don't benefit you are just not motivated enough.
As anyone who's ever had it will tell you, this is the first line of attack from the therapist upon failure - "You weren't motivated to recover". How surprising it is that a trial has been concocted to tell them what they've believed all along.
 

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
I am getting used to the surreal but even the journal title gave me a double take. There was a time in science when people thought a bit more about choice of words. Presumably psychosomatic research is what looks for all the world to be real physical research but is in fact just an idea that some research has been done in the mind of the researcher. The best bit seemed to me to be that they found the people who got worse were the ones who tended to get worse. But they spoilt it by assuming that, and also in other cases getting better, was causally linked to the treatment, without any evidence.

My bold.

This seems so prevalent in their journals. I won't say 'research', because it is not worthy of that.

When I read these, it literally seems like I am getting a first row seat to the mutterings of a mad person, dishing causality out to any correlation that fits their ideology. It is insane, and so lacking in basic science it makes me want to punch myself. :mad:
 

panckage

Senior Member
Messages
777
Location
Vancouver, BC
One interpretation of this might be that in the early stages of ME/CFS...
Yep and also I believe there is other research that says people who have had CFS for a long time are also better with coping. OTOH people who haven't had CFS for as long are more likely to figure this out via the 'other treatments' (eg. CBT) and be able to cope better because of the treatment (Slightly and for 12 weeks anyways :rofl: )
 
Messages
2,087
The more times I read this the more nonsense I find
They also reported greater interference with GET from comorbid conditions and other things happening in their lives.

Other things happening in their lives, such as, trying to live, maybe ? Trying to go to the shops, trying to clean the house? Isn't it awful when patients let these other things interfere with GET.
 

duncan

Senior Member
Messages
2,240
To me, some parts of this read like a university term paper on "Catcher In The Rye", while others bring to mind a lab paper written by a student who really hadn't completed the assignment, so he tries to write his way around his failings.

Some of the wording came across to me as oddly unscientific. For instance, in the conclusion, how scientific is "Our findings flesh out the deeper meanings..." Deeper meanings? This is testing an hypothesis, not plumbing the literary mechanisms employed by Salinger. Flesh out? As in a plot?

That's just one part of one sentence. The wording strikes me as odd throughout, and strangely presumptive. Yes, it reads academic, but to me somehow on the wrong side of the professor/student boundary.

It doesn't seem to be just reporting the results of a study. It's almost like it is setting the stage, creating the plot, and telling a story - and not subtly; I think many readers would feel as if they were being led by the nose the entire time.
 
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Messages
15,786
Why would an exacerbation of symptoms in response to GET be described as a barrier instead of an adverse reaction ?
The insinuation would be that the deteriorators are over-reacting to symptoms, and/or having a psychosomatic reaction to them. Whereas the happy little GET bunnies are motivated to push through the presumed mild discomfort of a little bit of "harmless" exercise :rolleyes:

Why would using other therapies be described as a facilitator to GET ?
Self-help therapy probably isn't as effective in brain-washing people. The patients can review the statements carefully, reflect upon them without pressure being applied, and seek verification online. So having more hands-on brainwashing applied from a charismatic therapist, in addition to the self-help guide, is probably more effective.

Of course, this begs the question as to how the effects of those other therapies were accounted for in reporting the outcomes of this trial. Since it generally resulted in the self-help therapy being rated as more effective, they are probably not attempting to look at the self-help therapy in isolation.
 
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