Conceptualizing the benefits of a group exercise program developed for those with chronic fatigue, 2019, Strassheim, Deary, Newton et al

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Dolphin

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[They do subgroup analyses comparing those with and without CFS]

https://www.tandfonline.com/doi/abs/10.1080/09638288.2019.1636315

Original Article
Conceptualizing the benefits of a group exercise program developed for those with chronic fatigue: a mixed methods clinical evaluation
Victoria Strassheim, Vincent Deary, Deborah A. Webster, Jane Douglas, Julia L. Newton & Katie L. Hackett
Received 12 Feb 2019, Accepted 22 Jun 2019, Published online: 09 Jul 2019

Abstract

Purpose:

Fatigue is a disabling and prevalent feature of many long-term conditions.

Orthostatic dizziness is a commonly experienced by those with fatigue.

The purpose was; to evaluate factors contributing to successful delivery of a novel group exercise program designed for people with chronic fatigue and orthostatic symptoms and identify targets to improve future program content and delivery.

Research methods:

We used group concept mapping methodology.

Participants of the exercise program with a long-term physical health condition and chronic fatigue- contributed ideas in response to a focus question.

They sorted these ideas into themed piles and rated them for importance and success of the program delivery.

Multidimensional scaling and cluster analysis were applied to the sort data to produce ideas clusters within a concept map.

Value ratings were compared to evaluate the success of the program.

Results:

The resulting concept map depicted seven key themed clusters of ideas: Exercises, Group atmosphere, Physical benefits, Self-management of symptoms, Acceptance and Education.

Value plots of the rating data identified important and successful conceptual ideas.

Conclusions:

The concept maps have depicted key concepts relating to the successful delivery of a novel exercise program for people with fatigue and identified specific targets for future program enhancements.




    • Implications for rehabilitation
    • Orthostatic symptoms are common in those with fatigue and might be a target for group-based exercise programs.
    • People with fatigue value a group-based exercise program that targets orthostatic symptoms.
    • The key concepts of a group-based exercise program valued by those with fatigue are the exercises, group atmosphere, physical benefits, self-management support, acceptance, education and support with looking forwards following the program.

Keywords: Fatigue, exercise, dizziness, physical therapy, mixed-methods, concept mapping, evaluation, long-term conditions
 
Following a multi-centered randomized controlled trial [PACE] of interventions for CFS/ME fatigue, graded exercise therapy was recommended as a treatment [12]. However, there has been much controversy over the reported findings of this study, both from researchers and from patient groups [13–15]. Although this approach has been suggested for CFS/ME fatigue, it is not known whether a graded exercise therapy approach is appropriate for a heterogeneous group of fatigued patients with a range of chronic diseases; particularly those who experience comorbid orthostatic dysregulation and related dizziness.
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So, despite all the patient evidence of harm, on the basis of PACE, they are taking a mixed group of patients with fatigue, so quite possibly including pwME, and giving them GET...

And here we see the blinkered view that they are building up about their approach.
Participants and data collection
All patients who had completed the program and current patients enrolled in the exercise program were invited to take part in the group concept mapping evaluation.
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So no attempt to collect the view of those who didn't complete the program then, to find out if there are any issues with their approach.

And they only got a 55% response from those they asked.
Results
Participant characteristics
Of the 59 patients invited to take part in the evaluation, 33 (55%) took part in one or more stage of the group concept mapping exercise. Twenty-eight (85%) of the respondents were female. In the nonresponder group, 22 exercise group participants were female (85%). Out of the 26 nonresponders, 22 were female (85%). An independent t-test revealed no significant differences between the mean age of the responders (45.58 (SD 14.13)) and nonresponder (mean ¼ 42.19 (SD 12.14)) groups (t(56)¼0.99 p ¼ 0.327).
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I'd heard from somewhere that Julia Newton doesn't appreciate the fact that patients don't wholeheartedly support her - when she's involved in this kind of rubbish I don't think she should be surprised.
 
Reading the full paper indicates this is not a GET program. It seems to be a service evaluation of their 6 week classes focusing on core strength and other muscle strengthening exercises in people with chronic fatigue and positional tachycardia or dizziness. It does not include aerobic exercises. A minority had CFS Fukuda, so we don't know whether any had PEM. There seemed to be quite low success rates but it's hard to tell since the response rate of 55% and lack of standardised questionnaires or objective measurement of anything make it pretty meaningless.
The best I can glean is that those who responded enjoyed the group aspect and thought they'd learned something.
 
I agree it does sound like GET. They claim it's not. Even non aerobic type exercises can tip us into PEM if we do enough of them. That's something I think a lot of people treating pwME don't realise. It's not just going for a longer walk each day that causes PEM. Adding anything that uses muscles, whether it's standing, sitting or isometric exercises done lying down, adds to the daily total.
 
If I may quickly rant about another pet peeve of mine, feel free to ignore though:

Every exercise program tends to include some kind of progression because the underlying assumption always is that you adapt and then have to increase the stimulus to adapt further. Predicting this progression correctly is probably the most complicated thing when designing training programs that are not based on autoregulating this aspect because you have to correctly guess the future without knowing it. People who are unaware of this (to me, most doctors and - using the term broadly - researchers in psychological sciences seem to fall under this category) tend to assume the training response is a given and deliberately increasing exercise volume from week to week is always correct and simple.

Whether or not something 'is GET' is hard to quantify because the term does not mean anything, or at least it means something different to everyone using it. Some people think of any progression in load/volume/intensity as GET while the PACErs pretty specifically seem to talk about increases in volume of aerobic exercise. The problem with the last bunch is that they claim it is tailored to the patient while the very core of the their program dictates that it is not and volume be increased even if there is no training effect happening because they say that is how it has to be and reality is wrong if it challenges their thoughts.

It is difficult to always tiptoe around what a bunch of people who are too lazy to look up what the words they are using are supposed to mean want you to think in any given moment, so I'd suggest we are simply mindful that any exercise program with a built-in progression will be able to trigger PEM for us (I could to that by increasing my volume of watching TV due to the cognitive demands, so maybe we can even scratch the 'exercise' bit) no matter if someone chooses to call it 'GET' on that day. This gets rid of the 'is this guilty-by-association-type-GET' play-on-words-trap.

The program here definitely has a progression through the sitting -> standing vector, so for all intents and purposes carries the same dangers as the 'GET' programs studied before, and as already mentioned apparently comes with a 50%+ dropout rate.
 
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Philipp said:
and as already mentioned apparently comes with a 50%+ dropout rate.
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And that's in a group designed for people with fatigue from all sorts of causes. I think 10 of them had Sjogrens and most did not have CFS of any definition, those that did it was Fukuda, so may not have had PEM.

The fact that PEM is not mentioned suggests to me they are ignorant about the effect this sort of increasing activity program can have.
 
Andy said:
I'd heard from somewhere that Julia Newton doesn't appreciate the fact that patients don't wholeheartedly support her - when she's involved in this kind of rubbish I don't think she should be surprised.
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Well she is one of AfMEs medical advisors; clearly a good 'fit'.

Esther12 said:
Vincent Deary creeps me out whenever I come across something from him.
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see this thread:
https://www.s4me.info/threads/pps-n...persistent-physical-symptoms-02-10-2018.6732/

both JN and VD (unfortunate initials) involved.
 
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