Patient experiences and the psychosocial benefits of group aquatic exercise to reduce symptoms of ME/CFS: a pilot study, 2020, Broadbent et al

https://www.tandfonline.com/doi/full/10.1080/21641846.2020.1751455

Australian research

KEYWORDS: ME/CFS, fibromyalgia, aqua exercise, patient experience, qualitative

 

The main outcome measures were reported in a separate paper, discussed here:
https://www.s4me.info/threads/effec...iduals-with-cfs-me-2018-broadbent-et-al.4722/

[27] Broadbent S, Coetzee S, Beavers R. Effects of a short-term aquatic exercise intervention on symptoms and exercise capacity in individuals with chronic fatigue syndrome/myalgic encephalomyelitis:
a pilot study. Eur J Appl Physiol. 2018;118(9):1801–1810.

 

No control group. I wonder how the results would have compared to the another group meeting up twice a week to chat over tea/coffee/herbal tea or whatever.

 

From another paper on the same study:

 

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The rest of this post is copied from my post here: https://www.s4me.info/threads/effec...-cfs-me-2018-broadbent-et-al.4722/#post-96890

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This is similar to another Broadbent paper:

This contrasts with the protocol in the PACE Trial 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). Bavinton J, Darbishire L, White PD - on behalf of the PACE trial management group. Graded Exercise Therapy for CFS/ME (Therapist manual)

The PACE Trial approach is about breaking the link between symptoms and how much activity is done. It is philosophically quite different.

 

Well, that was another useless psychological experiment that doesn't tell us anything about anything. The current paradigm is already exercise and "encouragement", what possible use could there be of a feasibility study for the thing that has already been used in practice for well over a decade? Absolutely none, of course. Just a jobs program for BS pseudoscience.

https://sci-hub.tw/https://www.tandfonline.com/doi/full/10.1080/21641846.2020.1751455

 

any group activity with people who have the same problems is going to be a welcome distraction with short lasting boost to mood I certainly do not need to write a paper to state the bloody obvious .

 

Also for some individuals with ME appropriately paced physical activity can be a very positive leisure activity. One only has to look at the discussions relating to yoga on many patient forums. For some, particularly with our society’s current fitness obsession, engaging in some form of physical activity is not only enjoyable, but is also important to their sense of self worth. It is not clear that engaging in such activity increases their total activity levels or has any rehabilitative impact on their underlying condition. It is equally likely or even more probable that participants enjoying such leisure activity rearrange their total activity patterns to accommodate it within their current energy envelope.

From a personal point of view when I have engaged in such activity, for example yoga, in the short term I rearrange my life to accommodated it resulting in an improvement in performance in that activity, which long term turns out to be at the expense of other things and potentially triggers PEM or longer term a relapse when the things put off become unavoidably pressing.

Also such paced activity could enhance an individual’s self awareness enabling them to better pace their lives over all, even producing a short term objective improvement in that activity and a subjective sense of overall improvement. However such would not result in a long term improvement in the underlying condition, just better management. One not infrequently comes across patients saying on the forums that when their condition deteriorates they get back on track with a spell of GET. I suspect what happens here is that they are using the idea of reducing activity to a stable base line, rather than seeking a long term graded increase in activity. So though their GET clinicians believed they had been treating the patient’s underlying condition, what the patient takes a way is a tool for structured activity management.

Further the patient group in this study is very very diverse, so who knows what is happening for whom. It is said that fibromyalgia responds to gentle stretching exercises. I have not looked at this research to know if it is any better than the research on exercise in ME, but assuming it is then any apparent improvement observed might relate to the concurrent fibromyalgia, as long as the pacing keeps participants within their current ME energy envelope.

Why do researchers in this area not only seem to lack any understanding of experimental design overall, but also take a profoundly simplistic approach to any theoretical underpinning?

 

I like to power walk when I feeling well enough to do so, "group" exercise is way too exhausting and would make me feel much worse.

 

I met Karen Wallman when I was in Perth two years ago. It's really not "graded exercise" as we know it, and I don't think it should have been in the Cochrane reviews. She explicitly did not want anyone to "push through" or ignore symptoms. The goal was to find out if there were benefits to be gained in conditioning if people could exercise a little just up to the point before they would relapse. It's not a stupid idea and it was clear she took the medical concerns seriously and it was not about saying the illness was caused by deconditioning.

I haven't read this new paper but it's a mistake to lump in Wallman with other GET studies.

 

It is very easy to get dehydrated and dizzy in a warm pool doing the mildest of exercises. Water that isn't just a few degrees below body temperature isn't comfortable for moving muscles, in my opinion.

Also important is the noise level, usually high in pools. Lighting can be bright off the water. Or if the class is small and private, the expense would be high, though it says self-paced. Easier to move in the water, but as a fibro sufferer, still have the same body parts (upper body in toto) affected so all that's left to exercise is the legs, which I can do with floor exercise.

Nice idea, but the details and the science matter.

 

Forgot to mention,I think Peter Trewhitt did, that by the time you anxiously prep yourself to get out of the house (assuming that you can get dressed, walk to the car, drive the car, walk to the pool building, withstand the noise and confusion, handle the sensory overload, handle the personalities, etc. etc.) your day may be shot. This seems to be for the mildest of mild, whether fibro or ME or a combo of both.

Basically all that for a bit of moving gently in the water for a few minutes and saying hello and smiling at one another, perhaps a chat.

Not to mention the ugly process of taking off a wet swim suit, hearing the god-awful dryers like lawn mowers in your ears. Locker doors slamming. And you pay to do this.

 

I had a similar experience as @Peter Trewhitt with yoga. The research nurse at UK ME/CFS Biobank was impressed by my muscle mass at my first appointment but that coincided with me finally finishing the ’regular’ yoga sessions because it was always at the expense of other things. Despite some gentle walks with the dog around the block, my muscle mass obviously has deteriorated but I have been able to read more and even sometimes manage to write something vaguely intelligent sounding.

Constantly a balancing act.

 

https://www.s4me.info/threads/chron...-published-22-february-2019.8371/#post-147256

 

Or just giving however much money the study costed directly to participants.

 

Hm, are you sure?

The reference cited in @Dolphin's quote from the other Broadbent paper is:
Wallman, K. , Morton A., Goodman C., Grove R., and Guilfoyle A.. 2004. Randomised controlled trial of graded exercise in chronic fatigue syndrome. Med. J. Aus. 180:444–448, https://www.ncbi.nlm.nih.gov/pubmed/15115421

Haven't read any of the papers quoted in this thread. But in the abstracts, like in most other studies on exercise in ME I came across, it is not explained how they account for the exercise pwME do in order to get to the exercise location.

Anyway, "to find out if there were benefits to be gained in conditioning if people could exercise a little just up to the point before they would relapse" seems to me not wrong per se, but I think the premises should be that only a very specific group of pwME are both physically able and can afford to take part in such studies, especially unless these studies are conducted at home.

If these premises are not explicitly mentioned in the inclusion criteria, also in the abstract, these studies seem to me to be misleading.


Edit 2: So if someone wants to use the wording "abandonment of avoidance behavior" for pwME who managed to take part in an exercise trial, they should also investigate which activities the participants had to abondon to be able to do (extra) exercise.

(Edit 1: Others worded most of my points in better English while I was working on this post in portions, so I 've shortend my text.)