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

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Why patients with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis improve or deteriorate with graded exercise therapy

From Professor Peter White et al:

http://www.jpsychores.com/article/S0022-3999(16)30232-X/abstract

From June issue of Journal of Psychosomatic Research:

Abstract on link

Full paper, which I do not yet have, is behind a pay wall

Dr Charles Shepherd

Hon Medical Adviser, MEA
 

A.B.

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I haven't read the full paper but the abstract is a good example of biological denialism. The biomedical literature has for years now reported a variety of unusual abnormalitis related to exercise in these patients. The IOM report highlighted this, and Peter White wrote a commentary on the IOM report so he must be aware of this. Yet this crucial information is omitted and instead an effort is made to establish some connection to psychosocial aspects.

I also question their definition of "improvement" after what they did in PACE. There might not be any real improvement, just the factors that make a patient more likely to say nice things about the treatment (such as motivation, faith in the therapy and therapist, and probably shorter illness duration, etc. some of which they found to be correlating with "improvement").

I do accept the theoretical possibility of there being patients that genuinely benefit from this intervention but I do want some real evidence, and if someone wants to sort out subgroups they must deal with the biological reality.
 
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Here it is:

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.

Abstract:

Background: Graded exercise therapy, GET, (along with cognitive behaviour therapy, CBT) is one of only two treatments recommended by the 2007 National Institute of Health Care Excellence (NICE) CFS/ME guidelines as having an evidence-base. NICE describes GET as an “approach to CFS/ME that involves physical assessment, mutually negotiated goal-setting and education”. However, lay surveys show that GET is considered unacceptable or harmful by many patients. Further investigation is needed to understand why some people seem to benefit from GET, and not others.

Aims: The study aimed to answer the question, “What are the differences and similarities in treatment perceptions and experiences of GET, among participants who improved and got worse in a pragmatic randomised controlled trial of Guided graded Exercise Self-help (GETSET).”?

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). Interviews were semi-structured to ensure all participants discussed all relevant topics to the study. Interviews were transcribed in full and a thematic, “constant comparison” approach was used in the analysis, using NVivo software to ensure all relevant data were analysed.

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.

Conclusion: Our findings flesh out the deeper meanings behind polarized experiences of GET, pointing to the specific conditions under which GET is most likely to work, and how health professionals could assist patients to benefit from GET.
 

Sasha

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Obviously you're going to feel more motivated to do GET if you're improving - you'll think it's working.

CORRELATION IS NOT CAUSATION.

Why does everybody else know that, but not these psychiatrists?

Good grief.

Edit: We've just seen so much of this shoddy thinking. Wasn't there a correlation of severity/length of ME/CFS and membership of a support group so they concluded that belonging to a support group perpetuated the illness? How can anyone possibly be so stupid? The sicker you are and the longer you've been sick, the more likely it is that you'll need support.

This is very, very basic teaching in university science courses at undergraduate level. How this nonsense continues to get published, I'll never know.
 
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JaimeS

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Our findings flesh out the deeper meanings behind polarized experiences of GET, pointing to the specific conditions under which GET is most likely to work, and how health professionals could assist patients to benefit from GET.
This is sad. "But it works, guys. Like, sometimes, it works. Really. Here are some real people talking about how we improved their lives."

I was looking for an emoji, but none accurately capture the sorrowful twist to my lip right now. Guys, you ruined a lot of people's health. I know that there were some people who still stated they benefited from GET. They were in the minority. Stop using this and stop attempting to justify its use.

-J
 

Esther12

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The thing that strikes me here is that half the patients deteriorated. But White and co have previously gone out of their way to go on about how safe it is.
They selected patients who reported deterioration and those who did not. They didn't give figures that allow us to compare to their control group. It doesn't let us say one way or the other whether GET was associated with harm.
 
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Posted by one of our members on MEA Facebook page:

I was on "Adaptive Pacing", one of the arms of the PACE trial, which I think is like the 'graded activity' as opposed to the 'graded exercise' you mention. It finished me off, bedbound and housebound within 3 days after completing the course and ever since, nearly 5 years ago. I was still working (from home) and walking when I began the course.
 

Sasha

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Posted by one of our members on MEA Facebook page:

I was on "Adaptive Pacing", one of the arms of the PACE trial, which I think is like the 'graded activity' as opposed to the 'graded exercise' you mention. It finished me off, bedbound and housebound within 3 days after completing the course and ever since, nearly 5 years ago. I was still working (from home) and walking when I began the course.
I must say I was surprised that there were no questions about adverse effects in the long-term follow-up questions sent out to patients in PACE two years after randomisation.
 

Large Donner

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Obviously you're going to feel more motivated to do GET if you're improving - you'll think it's working.

CORRELATION IS NOT CAUSATION.

Why does everybody else know that, but not these psychiatrists?

Good grief.
I'm willing to bet that those people in this study defined by the NICE guidelines criteria then watered down to Peter Whites nonsense criteria who are reported as improved also ate potatoes once a week.

So we can safely say that potatoes are the reason for their improvement.

But then we are left with the issue that the non improved group also ate potatoes at least once a week. Its safe to conclude that they must not have engaged the potatoes correctly.

Edit: We've just seen so much of this shoddy thinking. Wasn't there a correlation of severity/length of ME/CFS and membership of a support group so they concluded that belonging to a support group perpetuated the illness? How can anyone possibly be so stupid? The sicker you are and the longer you've been sick, the more likely it is that you'll need support.

This is very, very basic teaching in university science courses at undergraduate level. How this nonsense continues to get published, I'll never know.
Funnily enough more people die in ambulances than they do in butcher shops so if you are ever ill always call a butcher.
 
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