Physical function and psychosocial outcomes after a 6-month self-paced aquatic exercise program for individuals with [ME/CFS], 2025, Broadbent+

Karen Kirke said:
Since there are no/almost no between-group differences, I was interested in what the participants might have valued in the intervention. In a qualitative study of 11 participants in the pilot study of aquatic exercise, Broadbent et al. 2020 report:
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So, really, a chat with coffee and cookies would have done just the same. No surprise there. This is why they always try to make it pleasant, because then the pleasantness is reflected in the assessment, giving it a "placebo" bump, that is, mixing unrelated factors into the outcome and distorting its real value in a specific, preferred, direction.
 
Utsikt said:
Apologies for all of the questions.

Did Dr Broadbent provide you with the reference to van Campen 2020 or was that something you found yourself? What about the other studies in your post about their reply referenced?

PS. In an ideal world, she would sign up here and let us ask questions without a patient as a go-between.
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No, Dr Broadbent gave me the two pieces of information on SF36 PF that I provided in my post above preceded by the words "Dr Broadbent..." i.e.:
Karen Kirke said:
Dr Broadbent clarified that baseline SF36 physical function scores: “for the CON group were 47.1(21.1) and for the INT group, 50.6(27.6).”
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Karen Kirke said:
Dr Broadbent also explained that there was a within-group difference in SF36 PF scores in the INT group comparing pre- and post-intervention scores, but not in the CON group. She emphasized that “this is one finding only and the data is not officially published”.
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All the rest of my post is me providing context with other studies.

Anyone is free to email Dr Broadbent or ask her to join the conversation.
 
Karen Kirke said:
No, Dr Broadbent gave me the two pieces of information on SF36 PF that I provided in my post above preceded by the words "Dr Broadbent..." i.e.:


All the rest of my post is me providing context with other studies.

Anyone is free to email Dr Broadbent or ask her to join the conversation.
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Thank you for explaining.

I’m assuming she reads this thread if you’ve asked for her permission to share the info on the forum. So my PS was mostly to her :)
 
The SF36 is very susceptible to priming i.e. a change in your frame of reference for people with ME/CFS. I think Graham's excellent video about the issue with a subjective outcome used SF36 Physical function as the example.

I assume that the Broadbent study found a good response on SF36 Physical function and that's why they plan a separate publication. They can present those results, uncontaminated by the other results that are much less impressive. I don't think it is normal to present the results of one fairly small and circumscribed trial in two papers, so there certainly is a reason.

SF36 Physical Function has 10 questions with questions like
Does your health now limit you in these activities. If so, how much?
Limited a lot/ Limited a little/ No, not limited at all (Scoring: 0, 5, 10)

3. Vigorous activities, such as running, lifting heavy objects, participating in strenuous sports
4. Moderate activities, such as moving a table, pushing a vacuum cleaner, bowling, or playing golf
5. Lifting or carrying groceries
6. Climbing several flights of stairs
7. Climbing one flight of stairs
8. Bending, kneeling, or stooping
9. Walking more than a mile
10. Walking several blocks
11. Walking one block
12. Bathing or dressing yourself

You can see how hard those questions are to answer. Do you answer for times when you are ok, or do you take into account the times when you have PEM? Anyone who gets occasional PEM that causes them to spend time in bed could theoretically answer at least 'limited a little' to all of the questions. If you did that, you would have a score of 50. If you felt that you would also struggle all the time with vigorous activities, climbing several flights of stairs and walking more than a mile, you would have a score of 35. I think someone could have mild ME/CFS and score 35 with that approach.

And then there is the issue of repeatability and detail. Perhaps you can play golf today without problem, but could you then do it tomorrow? Perhaps you can lift your groceries from the trolley to the car, but can you carry them? How far can you carry them? Are the groceries the fortnightly shop for a family of five, or the weekly shop for a household of one? Do you regard choosing to only shower twice a week rather than daily as 'limited a lot' or 'limited a little'?

I have answered the SF36 myself, and I did not take into account the time when I have PEM, and instead answered for a good day.


Karen Kirke said:
White 2011 (PACE): 37 (15)
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Karen Kirke said:
Dr Broadbent clarified that baseline SF36 physical function scores: “for the CON group were 47.1(21.1) and for the INT group, 50.6(27.6).”

To put these values in context, here are the mean baseline SF36 PF scores (standard deviation) for the exercise group in a few other studies that will be familiar:

Wearden 2010 (FINE): 30 (18)
White 2011 (PACE): 37 (15)
Clark 2017 (GETSET): 47 (22)
Broadbent 2025: 51 (28)
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ME/CFS Skeptic said:
The 6 minute walking distance seem to have increased with 53.8 meters in the intervention group and 19.2 meters in the control group. So the difference is around 35 meters, which is around the minimal important difference and similar to what recent Long Covid exercise trials found, for example here:
Preprint - Resistance Exercise Therapy for Long COVID: a Randomized, Controlled Trial 2025 Berry et al. | Science for ME
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I believe they used the ISWT in that paper and not the 6MWT.
 
jnmaciuch said:
I don’t think I fully realized how little that is until now. Weeks of intervention just to walk around the corner of a city block.
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"Back to normal". Normal for a 78 year-old.

This is the point that settled that facts don't matter when it comes to us, that we can be lied about in public with total impunity. It was always clear, but this just made it absurd in a "going downstairs to get to the roof and everyone pretends like it's legit" kind of way.
 
jnmaciuch said:
I don’t think I fully realized how little that is until now. Weeks of intervention just to walk around the corner of a city block.
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It isn't just the null results alone that sink the psycho-behavioural ship, though they are enough. It is also the marginal value of the non-null results. The pattern is consistent throughout their studies. Even when they get a real result it is so small as to be practically meaningless to patients.

Clear genuine therapeutic results stand out, and do not have to be so heavily spun and marketed.
 
Sean said:
Clear genuine therapeutic results stand out, and do not have to be so heavily spun and marketed.
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I get the impression that when they do, it's because of subsets. So there are some who have clear benefits, while none for the rest, and the difficulty is in understanding what makes those positive responders different from the rest. So it can still require some working out, and large trials, to see those.

But we absolutely don't see those in any of this research. It's just bad all over the place. Except for those who are misdiagnosed, and especially for those who recover naturally. So the whole thing seems to be stuck in an infinite loop entirely because of those natural recoveries, which they seem to desperately hold on to the idea that it is their doing that does it.

Even though it's clearly not the case. It already was, but Long Covid has entirely destroyed this premise. But the infinite loop must infinitely loop on. They've been saying for decades that they've already worked it out, will work it out better with more time and funding. Except they haven't moved one bit from the starting line, which they conveniently placed at the same spot as the finishing line. They quite literally confused themselves, and can't face admitting it. To the point where most involved seem to genuinely hold on to those desperate beliefs, long after any pretense that they are legitimate has expired.

Looking at a few studies posted today about LC, good grief is is just mediocre all-around. Just entirely useless, adds nothing at all that we couldn't have told them 20 years ago. It's just generic waffling that is so unambitious it couldn't even accidentally produce anything useful in a century.
 
Hutan said:
I'd be pretty disappointed if I added two sessions of physical activity to my week for 6 months and gained weight.
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That's what happened to me. The fact is that exercise in general is a terrible way to lose weight because it takes so much time to actually do enough to lose weight. The amount of activity in this study burns a trivial amount of kcals so the null hypothesis is expecting no weight change.
 
HCPLive: Aquatic Exercise Improves Physical, Psychosocial Outcomes in People With ME/CFS

“Six months of self-paced, low-moderate aquatic exercise significantly improved fatigue, depression, walk distance, lower limb strength and peak expiratory flow. PEM was not worsened by the intervention, which is extremely important for ME/CFS management. This mode of physical activity may be safe, effective in improving functional capacity, and manageable for individuals with ME/CFS,” Broadbent and colleagues wrote.1

The investigators noted that the improvements in fatigue and depression, via the FACIT and HADS scores, respectively, were important findings, as patients with ME/CFS have high rates of depression and post-exercise malaise is a primary concern. Although no changes were seen in Sit–Reach scores or Apley Shoulder Test scores, there was large variability within and without the groups. Broadbent and colleagues also noted limitations of the study including a small sample size and considerable variance.

“Since there are few recent robust controlled physical activity intervention studies, the impact of different modes of exercise rehabilitation on individuals with ME/CFS is somewhat uncertain. This RCT provides evidence of efficacy and safety for low-intensity aquatic exercise rehabilitation,” Broadbent and colleagues concluded.1
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https://www.hcplive.com/view/aquatic-exercise-improves-physical-psychosocial-outcomes-me-cfs
 
Wyva said:
“Since there are few recent robust controlled physical activity intervention studies, the impact of different modes of exercise rehabilitation on individuals with ME/CFS is somewhat uncertain. This RCT provides evidence of efficacy and safety for low-intensity aquatic exercise rehabilitation,” Broadbent and colleagues concluded.1
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It’s easy to get good results when you ignore the control group.
 
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