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

[MeSci]

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

 

[adambeyoncelowe]

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

 

[Esther12]

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.

 

[NelliePledge]

would there be a peer review process if it has been published by the university rather than a journal?

 

[Trish]

Looks like a student project where the University repository keeps a record of the project written as a paper even if it doesn't get published. I note we only have access to the abstract, and it say's it's only accessible to repository staff until some time next year.

 

[Flying Dutchman]

Looks like a student project...
I note we only have access to the abstract, and it say's it's only accessible to repository staff until some time next year.

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.

 

[Trish]

It's not a student project:

Oops, I seem to be getting a lot of wrong ends of sticks at the moment. Maybe I should have said it reads like a student project. Professorships obviously don't confer sense.

I am reminded of an interview I listened to yesterday with one of the scientists who discovered an underground lake on Mars who described their team spending many months trying to find any evidence to contradict their finding - testing the hypothesis to it's limits, before announcing it. If only this bunch of numpties had such a rigorous scientific approach.

 

[Andy]

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

 

[Dolphin]

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).

 

[Dolphin]

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

People with CFS/ME report coping with reductions in function, which can lead to a loss in their personal “identity” as their role in life changes due to illness (e.g., no longer able to work), often resulting in loss of confidence and self-esteem.

"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

 

[Dolphin]

Recovery from CFS/ME is uncommon without treatment [4].

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.

 

[Dolphin]

Evidence from randomised controlled trials (RCTs) supports the use of GET and CBT in people with mild to moderate CFS/ME [7]. A recent systematic review of eight RCTs concluded there is moderate-quality evidence that GET is helpful for the management of CFS/ME, suggesting that GET provides moderate improvements in fatigue and functioning [8].

[7] Castell BD, Kazantzis N, Moss-Morris RE. Cognitive behavioral therapy and graded exercise for chronic fatigue syndrome: a meta-analysis. Clin Psychol Sci Pract. 2011;18:311–324.

[8] Larun L, Brurberg KG, Odgaard-Jensen J, et al. Exercise therapy for chronic fatigue syndrome. Cochrane Database Syst Rev. 2017;2:CD003200.

Reports of serious adverse reactions in the trials were rare, although many did not report such data [8].

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

 

[Dolphin]

There is, however, the controversy around the use of GET, with some ME patient charities raising concerns about the emphasis placed on GET by the NICE guidelines [9], and about its safety.

[9] Action for M.E. 2008: What progress? Bristol (UK): Action for M.E. 2008 [cited 2016 May 6]. https://ssb4mesupport.weebly.com/uploads/8/0/5/0/8050248/action_for_me_survey_ 2008.pdf

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

 

[Dolphin]

The range of conflicting views about GET as a treatment/intervention can also be unhelpful for patients attempting to understand, manage, and recover their health [16].

[16] Mallet M, King E, White PD. A UK based review of recommendations regarding the management of chronic fatigue syndrome. J Psychosom Res. 2016;88:33–35.

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.

 

[Dolphin]

However, because no single participant rated themselves as “much worse” or “very much worse,” we expanded the inclusion criteria to include participants who rated themselves as a “little worse.”

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.

 

[Dolphin]

Of these, eight declined [too unwell to do the interview (n=2), felt they had not used GES enough to be interviewed about it (n=1) and no reason given (n=5)].

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.

 

[Dolphin]

Interviews were conducted three to 26 months after participants completed GES, median 22 months (median 14=“a little worse,” and 22=“much better”).

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!

The results section makes references throughout regarding similarities and differences between the “much better” and “a little worse” groups. It is worth noting, however, that two participants who had rated their condition as “a little worse” on the 12- week follow-up questionnaire for the trial, subsequently reported at the interview that, on later reflection, they had experienced a modest improvement from GES.

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

 

[Dolphin]

For what it is worth:

As participants commenced their GES activity (which involved completing an agreed additional physical activity), two participants in the “a little worse” (and none in the “much better”) group described “false starts.” That is, they reported not feeling physically/emotionally well enough to engage with GES. One participant described a physical reaction, which she believed was due to a pre-existing hip condition and was given medical advice to discontinue GES. Another reported a number of major life events occurring after she had consented to the trial, which left her feeling too preoccupied to engage with GES. All other participants reported being able to start their programmes.

I did do it sporadically but at the time it wasn’t something that I could commit to fully … I think for things like that, I have to be really dedicated to the cause and be in the right frame of mind to be able to do it with that dedication that is required. And I didn’t have that at that point, there was too much else on my mind. P27, “a little worse”

What strongly emerged from the data was that regardless of whether participants reported feeling that GES improved or worsened their CFS/ME, following the GES programme was considered “hard work” by the majority of participants. The following sections discuss participants’ specific experiences associated with following the GES programme.

 

[Dolphin]

What it really did was make them [legs] more achy, that’s what it did. I mean then, then, you see that answer to that is, the therapist I spoke to said well then you just cut back and do much less. But that, that’s going nowhere. Right okay so you would be increasing it [GES walking activity] even more slowly? Yeah. P24, “a little worse”

This contrasts with the PACE Trial graded exercise therapy manual [4] where what participants are asked to do is determined by “their planned physical activity, and not their symptoms” (p.20); similarly, “a central concept of GET is to MAINTAIN exercise as much as possible during a CFS/ME setback” (p.51) and “if the participant reports an increase in fatigue as a response to a new level of exercise, they should be encouraged to remain at the same level for an extra week or more” (p.66).

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

 

[Dolphin]

It was important for participants to have time and space in their lives to follow the GES programme. The flexibility and patient-centeredness of the GES programme supported participants to develop programmes that (at least in theory) fitted into their lifestyle. For example, one mother just parked her car a little further away from her child’s school to increase her walking. Perhaps more significantly, however, participants described needing enough “capacity” in their lives to experience an exacerbation of symptoms and for this not to interfere with essential life activities. Thus, GES seemed to work best for participants who had fewer commitments that interfered with GES (e.g., life responsibilities such as work, looking after children, housework, food shopping; lifestyle changes participants were making; or other activities which supported them emotionally).

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.