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

Some of the language reflects understandings of things almost 20 years ago and I think it was absolutely a mistake for her to frame it as "graded exercise." It's only graded up to the point where someone feels symptoms. There is no suggestion that this is about "recovery." Now, I understand that people with ME don't need to be encouraged to do more and there are easily aspects of Wallman to criticize. But it's just not a GET study like PACE or the others. It is not based on the notion that the illness is caused by deconditioning. It is based on the notion that patients have some amount of deconditioning because of their physical illness and need to address that and perhaps they can do a little more than they realize. However faulty that might be, I don't think it's an inherently stupid or illogical idea, especially 15-20 years ago.

 

It does seem to be based on the idea that CFS patients suffer from avoidance behaviour and that prescribing exercise as a treatment would make them fitter and benefit their health in all sorts of ways.

I remember reading a paper by Wallman from that time period that focuses strongly on fear-avoidance in ME/CFS. I think it's this one. https://www.ncbi.nlm.nih.gov/pubmed/15595287 At the time Wallman also wrote things like: "Patients should also be informed that the exercise sessions are in addition to their normal activities, and that some initial aches and pains are usual when beginning exercise for the first time."

I would describe the approach in the 2004 trial by Wallman et al. as symptom- as opposed to time-contingent graded exercise. There's an important difference between the two but the first one is still based on the notion that giving CFS patients (who are likely already struggling to keep with their daily tasks and responsibilities) extra physical exercise assignments will improve their health. EDIT: and the more they can do the better. So, I think it's correct to describe this as graded exercise therapy.

 

Moving one's body parts against the extraordinary weight of the water in a pool does give one an inordinate amount of strengthening per time of perceived effort.

However, why this modality? Because it is effective and enjoyed by people with arthritis because of the off-loading of joints. Also effective after back surgery/injuries.

So, somehow in the mind of the researcher there is this lightbulb going off: certainly ME/CFS patients could offset muscle mass deterioration by spending a short time in the pool each week. And they would enjoy socializing with their disease afficted cohort, just as arthritics do. Fine.

There are the ME-specific impediments to getting to and from the facility and withstanding the sensory bombardment that would cause they pwME to drop out.

So, there's a misunderstanding of the illness parameters regarding the ability of all but most mildly afflicted ME and fibro people. The reason underlying this misunderstanding is the magical thinking by the researcher that aquatic exercise will indeed act like GET and the pwME will get better and better. Otherwise, why suggest this?

I would posit that weight bearing (bone preservation) exercises are important, too. Although being in a pool cam preserve or even build muscle, it does not preserve bone. It is not weight bearing.

Muscle atrophy is a serious and painful process and somehow during the limited activity of the ME day, one must do some muscle strengthening. Why not have a physical therapist make home visits that encourage the ME person to fit various exercises into her daily life.

 

We have a heated pool in my building, so I have easy access. The problem for me is that the warm water makes my BP drop, and I feel unwell for days after. I also don't do well with resistance type exercise- walking against water made my legs weaker and sore. I benefit from walking outside in cool air.

 

Thanks for explaining, @dave30th , and thanks @Michiel Tack for substantiating some criticism.

I agree it's important to differentiate, and to take the historical context into account.

(I don't know the details to understand which therapy is GET in the sense of the cognitive-behavoristic approach and which isn't, and how 'common sense' graded exercise might have been hijacked by the coining of the term GET but I think this would be for another thead anyway.)

What annoys me about this and I think is a common trait and continuity of many exercise trials and treatment suggestions for pwME since ME was framed as CFS: that investigators/ doctors/ therapists don't ask what amount and which type of exercise people already do or tried to do on a regular basis.

It's like the doctor that suggested that "we" first try to drink more fluid to get rid of my urinary tract infection -- but she didn't ask how much fluid I had been drinking daily since having contracted the infection.

Doctors and therapists might see many patients who don't drink sufficient fluid or don't exercise but why do they assume that this applies to most or all patients? Why do they think most or all pwME haven't tried some sort of common sense 'graded exercise' by their own?

Why don't they ask properly and differentiate between patients?

(Edited -- grammar)

 

I have managed to increase my fitness, and more importantly, do more so life is pleasanter. I started by walking to my kitchen once a day using a rollator and sitting down on the way to begin with (it is about 20 steps away). After a few weeks I could get there. It took months but I finally got so I could walk round the house a few times a day in the morning and evening, though I still have to spend the afternoon in bed.

At one point I managed to get into the garden so I could get some sunshine but not so much any more.

Basically, life is better the more you can do. It helps with aches and pains if you move and mitigates some of the secondary effects of a sedentary life, but in ME you need to concentrate on the activities of life. I wish I could have a shower by myself. That is a goal that means something to me. Getting into a pool is way down the line, but being able to get into a bath would be a dream.

Workwell suggest you try to do what you can in the small window of anaerobic respiration before the broken aerobic system comes into action, about 2 minutes I think, and that is where we can get fitter.

Researchers and medics just can't comprehend how little we can do so most of the things they come up with are totally impractical. Living first, then exercise as everyone else understands it.

 

This.

 

I am conserving my energy all the time. Just because it is so limited and I want to spent it on things I love or need to do. This is the complete opposite to the general population, who have to do extra exercise on top of their normal life, take the stairs, get more steps done! It’s just a weird opposite world!

Keep in mind that I am fairly mild, hardly have to do any cooking or cleaning ánd I sometimes have “almost normal” days, where I am definitely not deconditioned, actually I am sometimes suprised how well I do on those days!
When I have one of those days, you can be sure I spend them doing a thing I absolutely love! I will not spend that precious energy doing excersises in a pool!!

 

Literally one of the first things I did after my initial onset of symptoms is join a gym. I'm sure many others did the same. It did not go well but I tried my damndest. Those who favor the psychosomatic model never ask what we did, always assume we didn't. Most of the ME-BPS advice consists of things most pwME will have tried, usually without being advised to. They're just natural things to do. That's easy to test and would have debunked many things, hence why those questions are never asked, always assumed.

Probably the biggest flaw in this entire ideology: they assume stuff and take great pains to never contradict it even when it's easy to do. That's the exact opposite of science. It's so mediocre and reckless.

 

@rvallee I literally bought a stairmaster the first year and almost crippled myself. I later sold it to my homecare helper.

 

I am diabetic now so I have a blood sugar machine. For years I have had attacks which I believed were caused by low blood sugar. It was very frustrating because it happened when I did more because I felt better.

I was dismissed (and ridiculed on a couple of occasions) and told it was panic attacks or generalized anxiety. No help from anyone.

Last night I had an attack but I could measure my blood sugar. It was 3.1, hypoglycaemic.

It stuck me forcibly that over thirty years, no one gave me a machine to check if I was correct that my attacks were low blood sugar, they just made assumptions and did not take into account my explanation that eating something helped.

It is a basic example of the way ME is considered by the medical profession. Their insight is superior to ours which is not worthy of consideration at all.

 

Yes, this!
I actually joined this gym where it was cheaper the more you came to the gym. When you went three times a week it was 2,- a month I think. I thought that it would help me to just go every day and do very little, do some weight lifting, go into the sauna, and build it up like that.
This was before I had ever heard about GET or me/cfs!

 

I can see where you're coming from because this is how I thought of it when I became ill.

However I wasn't deconditioned to start with. I swam twice a week 50*25m lengths in 45 minutes, I also did muscle toning classes. I was fitter than most. I bought into this idea, in part, because I was used to being fit. So, as I lost that level of fitness I thought perhaps I was deconditioned, but I was still probably at least as fit as a sedentary person, if not more so.

In hindsight, the danger here is -

PEM can be delayed so you might feel okay doing the exercise but be clobbered 3 days later, but if you haven't learned about PEM you may not make the connection.

It can take several weeks to fully recover, & if you haven't made the connection & are mildly enough affected, you'll go back to the pool and do it again. So you go give yourself another dose of PEM before you've gotten through the first bout.

Rinse and repeat several times and you've got compound PEM - you won't know what's happened & so you drop out temporarily.

Others seem to manage fine & keep it up. They may be even more mild than you, or be suffering from fatigue not chronic fatigue syndrome, or FM. You don't know that though & think you've just caught a bug.

When you're well enough to have another go, you do it all again. Or you decide maybe water exercise isn't for you (maybe you caught a bug at the pool before?) and you try the same thing with some other form of exercise.

So you continually put yourself into a series of compound PEM.

N=1 & all that, but I believe this kind of thinking and logic is what pushed me into severe ME. Long term follow ups are essential with this kind of thing because in the short term things may seem fine but long term there can be a lot of damage done.

 

I'm somewhat sceptical

I'm again sceptical

 

I think there can be lots of things one can find to do that feel good doing them. However, the question is what is the payback, how sustainable are they, and does it mean one has to cut down other activities.

 

Another thing that some people, probably more women than men, would be conscious of is body hair. Some may feel they need to shave their legs, etc. before going to a public swimming pool which could be an extra chore.

 

I have no idea how that sentence about a "trend" made it past peer review. It's exactly like those people pointing to short-term dips in climate change data that disappear when zoomed out. It's blatantly unscientific and frankly ridiculous.

 

Further relevant thoughts on this pilot study from ME Australia:

https://meaustralia.net/2017/03/23/findings-on-aquatic-pilot-trial-for-chronic-fatigue-syndrome/