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

Amw66 said:
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.
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Is there a definition as to what constitutes recovery ?
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No definition for recovery was given for this study, but then they didn't publish data either on recovery in this study.
 
Dolphin said:
No definition for recovery was given for this study, but then they didn't publish data either on recovery in this study.
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I think the lack of defined recovery (and potentially lack of consistent recovery definition) and relative stats is something that NICE should be made aware of during the guideline process.
How can you claim recovery without such basic information?
 
Inara said:
Is Getset Julie propaganda, i.e. invention, or is she supposed to be real?
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I know the answer to that - yet - don't know the answer to that... :-P

She is an example person in the GETSET user guide (now off-line?), if she is a real person or not we don't know - but very revealing in how the researchers themselfs think of patients.

Patients just took the example data and run with it - but she was supposed to seek treatment for ME/CFS, yet working a full week and other activities. Oh, and they suggested stopping her "boom-bust cycle" - by adding even more activity to her schedule.

Spoonseeker tells you all you need to know :)

https://spoonseeker.com/2017/07/03/spotlight-on-getset-julie/
 
I started the stretching at home and then I introduced just a couple of minutes further walking. I’d just found, it was just enough to tip me over the edge really. … Towards the end I sort of said I can’t do this and you know it was impacting on me and obviously my family in turn quite massively. So, I think I gave it a fair go but I was happy to stop. P5, “a little worse”
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The physiotherapist, she was just amazing, she was so encouraging and understanding. I mean I just, yeah she was phenomenal. There was a part of me that was, I know this is working* but you really need to clone this particular woman to make it work. …The thing also, once it got started, because it was like every fortnight and someone was taking interest in what I’d been recording because I felt so isolated, it was almost like I wanted to do a good job for my teacher! P14, “much better”
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It seems plausible that someone like this who was so grateful to the physiotherapist might give biased responses about how much the therapy was helping.

*But was it really working? Open-label trials aren't necessarily reliable, especially with subjective outcome measures.
 
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While the GES booklet was helpful for some participants, two described it as patronising, having the feel of marketing material or seemingly designed for participants with a higher level of functioning than their own. They noted in particular that the statement suggesting that there should be no ill effects from GES was not accurate in their experience.

I really felt like it was written for an entirely different group of people, because all the ‘example’ people, were people who in my opinion are miles ahead of me [in ability]. … it said research shows that, there will be no ill effects, and I already knew at that point that yes there can be ill effects and, yes there was, was ill effects for me. p23, “a little worse”
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Doesn't sound like the participants would have been able to give informed consent.
 
inox said:
She is an example person in the GETSET user guide (now off-line?), if she is a real person or not we don't know - but
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so it's imaginary, i.e. "this is where YOU could get to with OUR program"?
 
Participants reported that being allowed to choose their own activities (e.g., walking, gardening) helped “keep it interesting” and supported motivation. Some felt that the remit of GES was too narrow and that it needed a broader approach, e.g., one that included CBT, or took into account mental activity.

Making it enjoyable really. Keeping it interesting, because if it’s hard, I mean it’s hard enough as it is, but without, I mean if I was doing housework put music on, put nice loud upbeat music so it keeps you motivated. If it’s sunny go outside, anything that gets you moving. P10, “much better”

The graded exercise is good, but if you have mental activity, that’s just as straining as exercise isn’t it? P29, “a little worse”
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I wonder whether people really suggested they needed CBT or whether this is spin?

The mental activity point is a good one, and is generally ignored by graded activity approaches for ME/CFS where you are encouraged to do the same amount and then increase but there is no suggestion you should decrease with more mental activity in anything I recall reading.
 
Where participants had engaged in exercise pre-illness, a belief that exercise equated to health, and knowledge that steadily increasing physical activity could lead to improved ability and fitness, may have been established prior to GES. Thus, GES already fitted their prior health beliefs model, albeit at a much slower pace, and from a lower baseline.
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Yes, we are fed a constant diet of people saying exercising is good for you. If anything, I think patients need to be warned this might not be the case with ME/CFS.

I used to do triathlon. And I knew about sort of pushing myself a little bit extra each time I trained to accomplish a little bit more. … It sort of made perfect sense to me that there would be similar approach with the therapy. P8, “much better”
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Except that the model is very likely flawed. People's symptoms vary and how much they can do before provoking symptoms can vary, which is hard to explain by the deconditioning model. Similarly, there have been dozens of studies finding abnormalities that can't be readily explained by deconditioning.
 
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Dolphin said:
I wonder whether people really suggested they needed CBT or whether this is spin?

The mental activity point is a good one, and is generally ignored by graded activity approaches for ME/CFS where you are encouraged to do the same amount and then increase but there is no suggestion you should decrease with more mental activity in anything I recall reading.
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There is zero chance this is true. This is exactly like Trump's "people are saying". They are putting their own words into people's mouths. The idea that patients would voluntarily suggest CBT is laughable.
 
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