Guided graded exercise self-help for chronic fatigue syndrome: Patient experiences and perceptions, 2018, Cheshire et al

Findings look interesting (improvement (n=9) and deteriorated (n=10)); conclusion daft (Guided graded Exercise Self-help may be improved by targeting those most likely to improve, and education about the indeterminate phase.)

Datum: 11 juli 2018

URL: http://westminsterresearch.wmin.ac.uk/21301/

Guided graded exercise self-help for chronic fatigue syndrome: Patient experiences and perceptions
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Cheshire, A.(*), Ridge, Damien T., Clarke, L. and White, P.D. Anna Cheshire

* Psychology Department, Faculty of Science and Technology, University of Westminster, 115 New Cavendish Street London W1W 6UW, U.K. +44 20 7911 5000 ext 64834,

Email: A.Cheshire@westminster.ac.uk

Abstract

Purpose

This study explored patient experiences of Guided graded Exercise Self-help delivered as part of a randomised controlled trial for people with chronic fatigue syndrome/myalgic encephalomyelitis, which found that Guided graded Exercise Self-help was better than specialist medical care at reducing fatigue and improving physical functioning.

Methods

Semi-structured interviews were conducted with patients reporting improvement (n=9) and deteriorated (n=10), and analysed using a thematic 'constant comparison'.

Results

The improved group described more facilitators to doing Guided graded Exercise Self-help, and were more likely to describe high levels of self-motivation, whilst the deteriorated group described more barriers to Guided graded Exercise Self-help (including worse exacerbation of symptoms after Guided graded Exercise Self-help, greater interference from comorbid conditions and obstacles to Guided graded Exercise Self-help in their lives), and had been ill for longer. Having the capacity to do Guided graded Exercise Self-help was important; of note, those with relatively lower levels of functioning sometimes had more time and space in their lives to support their Guided graded Exercise Self-help engagement. We identified an important 'indeterminate phase' early on, in which participants did not initially improve.

Conclusions

Guided graded Exercise Self-help may be improved by targeting those most likely to improve, and education about the indeterminate phase.

Keywords: chronic fatigue syndrome; myalgic encephalomyelitis; graded exercise therapy; randomised controlled trial; qualitative.

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(c) 2018 University of Westminster

 

So even when 10/19 people deteriorate, they claim it's a positive result!

 

Or they selected patients from the trial so that about half had reported deterioration.

 

It's not a student project:
The first author, Anna Cheshire PhD, is an experienced researcher, having obtained her PhD >10yrs ago;
Damien Ridge PhD is a full professor;
Lucy Clark PhD has been a researcher for 20yrs;
And the senior author is our slightly involuntarily retired friend, Peter White.

All are old hands at curing ME, and most recently teamed up on GETSET.

Possibly they're awaiting publication in a journal. If not, then it's weird to limit access to the paper for 12 months.

 

Now paywalled at https://www.tandfonline.com/doi/abs/10.1080/09638288.2018.1499822?journalCode=idre20

 

Okay, I have read the full text now.
I didn't find it particularly exciting, so I'm not sure I would recommend others use their precious time and energy to do so.

Anyway given that I have read it, I will post my comments now, but I'm not sure they are predictably exciting.

It's a pity that Peter White was an author as perhaps without him, other things might have been revealed. I feel this might have been "White-washed" (I can't remember if it was me or somebody else who came up with that phrase).

 

The sentence in the introduction, listing the effects of the illness on people with CFS/ME:

"Loss of confidence and self-esteem" is not something that I think should have been highlighted over other points.

Note that this paper uses "CFS/ME", so that's what I will most likely use

 

It's also uncommon with treatment with CBT or graded exercise therapy, but that is not the impression given my this sentence.
"Recovery" is referred to twice, I think, in this paper with regard to graded exercise, even though there is no evidence participants actually recovered.

 

I wonder did a reviewer get them to add the proviso in the second part of that sentence.

 

It is frustrating that the impression is given that only ME patient charities are concerned about these issues.

 

Peter White would just like patients to be told that graded exercise therapy has been proven to be safe and can lead to recovery.

Having a range of opinions is actually a better situation than the situation if he got his way.

 

It would have been much more interesting if people who had been made much worse or very much worse were included, but it doesn't look like it was possible in this case.

 

It's a pity that the 2 people who were too unwell to be interviewed weren't interviewed in some way, though it is understandable that they were not.

 

Probably good that people had a long-term perspective, though I think the human mind can be inclined to selectively recall positive experiences and to cause people to somewhat forget negative experiences.

A bit of-topic, but I remember swearing to myself never to go to a particular place again, but all I can remember from the trip are good experiences!

So these 2 people were definitely not the best examples to have of people who said they were worse.

 

For what it is worth:

 

I always wondered what (i) graded exercise therapists were recommending and (ii) patients were actually doing.

 

One thing that we don't know from the study as actometers weren't used is whether there was activity substitution, as there seems to have been in some other studies, where people go for a walk (say), but their total activity levels haven't increased as they reduced other activities.

This activity substitution would be more possible for people with fewer responsibilities.