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

[Dolphin]

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

Australian research

Articles
Patient experiences and the psychosocial benefits of group aquatic exercise to reduce symptoms of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: a pilot study
Suzanne Broadbent,Sonja Coetzee,Rosalind Beavers &Louise Horstmanshof
Received 17 Feb 2020, Accepted 31 Mar 2020, Published online: 11 Apr 2020

ABSTRACT

Background:

The aim of the study was to explore the experiences of participants in a short aquatic exercise programme for individuals with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, and to gain insight into the perceived psychosocial benefits.

Methods:

The exercise programme was of five-weeks duration, with two self-paced aquatic sessions per week. Eleven female participants (mean age 54.8 ± 12.4 yr) reported the onset and changes (24–48 h) in post-exercise fatigue, pain and other symptoms after each session, and completed a post-intervention interview comprising nine open-ended questions, with additional discussions. The reported symptoms and interview responses were entered into a spreadsheet, grouped and coded to identify the themes and subthemes.

Results:

The main themes were ‘symptoms’, ‘benefits’, ‘engagement and compliance’, and ‘limitations’. The analysis found that group aquatic exercises reduced social isolation through shared experiences and enhanced support; were beneficial and enjoyable without exacerbating symptoms; were preferable to other modes of exercise; and were seen as a long-term exercise option. Participants reported a reduction in pain, fatigue and anxiety after the intervention.

Conclusions:

Psychosocial benefits suggest that self-paced group aquatic exercise is a safe, enjoyable and effective mode of exercise rehabilitation for people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

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

 

[Dolphin]

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/

As part of a pilot study investigating the efficacy of a five-week aquatic exercise intervention for individuals with ME/CFS [27], a qualitative exploratory descriptive (QED) design to explore the experiences of the cohort was employed, the better to inform the clinical application of aquatic exercise as a rehabilitation exercise modality.

Participants underwent a series of physical and functional assessments prior to and after the five-week exercise intervention. These outcome measures form the basis of a separate study recently published [27].

[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.

 

[Dolphin]

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.

 

[Dolphin]

The eleven participants were all women diagnosed with ME/CFS, and six also had fibromyalgia syndrome as a diagnosed comorbidity. Cohort demographics are reported in Table 1. The mean age of participants was 54.8 ± 12.4 yr. Participants had reported ME/ CFS symptoms for 17.0 ± 7.6 yr, with a mean time since medical diagnosis of 13.4 ± 6.2 yr. Apart from fibromyalgia syndrome other common co-conditions included depression/anxiety (n = 5), sleep disorders (n = 5), asthma/breathing difficulties (n = 7) and osteoarthritis (n = 6).

From another paper on the same study:

'Of the eleven participants, seven also had COPD or respiratory problems, six had diagnosed FMS, four reported recurring neurological symptoms (vertigo, migraines), three had thermal instability, and one had POTS.'

 

[Dolphin]

The aquatic exercise intervention used a model of self-pacing or adapted pacing therapy [15,39]. This has been defined as (i) a person-centred approach to managing symptoms by using activity that is adapted to promote health and well-being [15]; and (ii) where patients are active only within their symptom limits and energy envelope [39].

All participants were verbally encouraged throughout each session and constantly reminded that they were to self-pace and that they could rest if needed.

Participants were asked to self-pace and not to try and increase their time in the water, or intensity of exercise, if they were symptomatic.

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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

All exercises were self-paced.

Participants were asked to not increase their time in the water, or intensity of exercise if they were symptomatic; they were asked to reduce exercise time or intensity if they felt more symptomatic during a session, and any changes in participant health, well-being or symptoms were recorded by the supervisors.

---
This is similar to another Broadbent paper:

Intermittent and graded exercise effects on NK cell degranulation markers LAMP-1/LAMP-2 and CD8+CD38+ in chronic fatigue syndrome/myalgic encephalomyelitis.
Broadbent S1, Coutts R
https://www.ncbi.nlm.nih.gov/pmc/articles/pmid/28275109/

The GE protocol was based on the exercise intensity used by previous GE research (Wallman et al. 2004), while the IE protocol was adapted from similar protocols for pulmonary and heart failure patients who are typically deconditioned, and who fatigue quickly, although the mechanisms of fatigue differs to CFS/ME (Butcher and Jones 2006; Piepoli et al. 2011; Puhan et al. 2006).
[..]
The exercise intensity was reduced if any participant reported a worsening in symptoms.

“on days when symptoms are worse, patients should either shorten the session to a time they consider manageable or, if feeling particularly unwell, abandon the session altogether”

Wallman KE, Morton AR, Goodman C, Grove R. Exercise prescription for individuals with chronic fatigue syndrome. Med J Aust. 2005;183:142-3.

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.

 

[rvallee]

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

 

[alktipping]

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 .

 

[Peter T]

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?

 

[Mij]

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.

 

[dave30th]

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

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.

 

[shak8]

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.

 

[Hutan]

The analysis found that group aquatic exercises reduced social isolation through shared experiences and enhanced support; were beneficial and enjoyable without exacerbating symptoms; were preferable to other modes of exercise; .... Conclusions: Psychosocial benefits suggest that self-paced group aquatic exercise is a safe, enjoyable and effective mode of exercise rehabilitation for people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

I'd just add to the good points made above, that the location of this study probably also plays a part in the fact that there were reported benefits. I'm assuming, from the name of the university of the lead researcher (University of the Sunshine Coast) that the trial was done in Queensland where ambient temperatures are usually warm.

My experiences in trying to swim in both an outdoor pool and an indoor heated pool when I was first ill (and still thought I just needed to gently exercise my way back to health) are that temperature (cold temperatures, changes in temperatures) can make aquatic exercise much more demanding on energy and also cause dizziness. I expect that the women with fibromyalgia and osteoarthritis co-morbidities in particular would not have reported such benefits if they had been trying to do the exercise in a less conducive environment.

Cross posted with shak8 - I agree, the details matter. What perhaps works for some people on the Sunshine Coast might not work in a different environment. The authors have taken quite a leap to extrapolate from this one trial of a small group of women, many with co-morbidities.

 

[shak8]

I'd just add to the good points made above, that the location of this study probably also plays a part in the fact that there were reported benefits. I'm assuming, from the name of the university of the lead researcher (University of the Sunshine Coast) that the trial was done in Queensland where ambient temperatures are usually warm.

My experiences in trying to swim in both an outdoor pool and an indoor heated pool when I was first ill (and still thought I just needed to gently exercise my way back to health) are that temperature (cold temperatures, changes in temperatures) can make aquatic exercise much more demanding on energy and also cause dizziness. I expect that the women with fibromyalgia and osteoarthritis co-morbidities in particular would not have reported such benefits if they had been trying to do the exercise in a less conducive environment.

Cross posted with shak8 - I agree, the details matter. What perhaps works for some people on the Sunshine Coast might not work in a different environment. The authors have taken quite a leap to extrapolate from this one trial of a small group of women, many with co-morbidities.

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.

 

[It's M.E. Linda]

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.

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.

 

[Sly Saint]

I'm assuming, from the name of the university of the lead researcher (University of the Sunshine Coast) that the trial was done in Queensland where ambient temperatures are usually warm.

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

 

[Snow Leopard]

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.

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

 

[Trish]

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.

I don't doubt the good intentions of the authors of this study, but to claim benefits on the basis of a study with no control group who would need to be given an equal amount of attention and social contact without the swimming element, and to claim increase in fitness on the basis of so short a study is very concerning.

It gives the impression that this is suitable treatment for anyone with ME, which I think is unjustified and can lead to people being given harmful advice.

Most people I have come across with ME are already up to their activity limit just doing whatever is required by their circumstances to survive, whether it be personal care, preparing meals, going to work part time, looking after a family, or just getting to the loo and back, depending on severity level.

Contrary to the assumed need for us to find extra ways to exercise and try to increase fitness, we mostly need to find ways to cut back. And adding an extra activity like this twice a week would, for many, necessitate abandoning other more essential activities.

It is all very well to say the participants were encouraged to self regulate the amount of activity in the pool, but travelling to the venue, dressing, undressing, showering, getting in and out of the pool, and coping with the temperature changes, would be more than enough to wipe many of us out, even when our ME is mild. When my ME was mild, swimming pools were a sure recipe for setting off PEM. This group must surely have had very mild ME.

 

[Adrian]

It's really not "graded exercise" as we know it, and I don't think it should have been in the Cochrane reviews.

Isn't there a wider point here in that you can't do a meta analysis over the effectiveness of an intervention by including multiple different interventions. If Cochrane wants to review GET they need to go back to the treatment protocols and classify what is actually meant by GET. If they want to do a review of exercise then they need to look carefully at the advice and classify results based on the different treatment protocols. Otherwise what they do will be meaningless drivel (which it is so far).

 

[MSEsperanza]

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.

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

CONCLUSIONS:
Graded exercise was associated with improvements in physical work capacity, as well as in specific psychological and cognitive variables. Improvements may be associated with the abandonment of avoidance behaviours.

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.)

 

[NelliePledge]

If you do something extra like that you’re going to be at the milder end of ME like me and if you’re lucky enough to have family who will do literally all the chores and cooking I imagine it might be a nice thing to choose to spend all your energy on. In my experience I can’t do stuff like that without a reduction in everything else including daily living activities.