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

It is good that they looked at this

 

I wonder did they report them all?

True

 

Lots of people in our local clubs enjoy what they do Saturday night but have payback Sunday morning It doesn't stop them doing it again the next week!

And, of course, we all know that drinking a lot of alcohol is never dangerous in the long term....

 

yes but that's different than claiming that their causing their own illness and that it is caused by deconditioning. obviously she thought people could get some benefits from doing "exercise" and we know that patients really don't need to be encouraged to do more. But to me it's more of an effort to help people get the most out of their limits than a "graded exercise" program, even though she named it that. To me, the salient feature of GET is pushing through symptoms. But I understand why others would view it differently.

 

I've seen this other places as well. Health care professionals saying "graded exercise" when they mean adapted/limited exercise.
It's frustrating if we start talking past each other about such an important matter.

 

Sadly, too often it is the mildest of ME, and then results are generalised to all .

 

Frame that as going to school and you have the same situation for kids

 

Thinking about this, I realised that what we have is this circular argument

Someone gets an infection or whatever which limits what they can do. If they can only manage 50% or less of what they could before for six months they are diagnosed with CFS.

Now six months of doing less than half what you did before will make you less fit so BY DEFINITION you have to be deconditioned before you can be diagnosed as having CFS.

Then they turn round and say that being deconditioned causes CFS.

If you need to be doing 50% less than before it means that BY DEFINITION again you must be less fit than you were when you became ill.

It makes no sense at all.

 

It makes no sense because our symptoms aren't the same as symptoms due to lack of fitness.
All the other noise about deconditioning perpetuating the illness reflects the fact that they don't respect us enough to actually listen to what we have to say and realise our experience is different.

 

No. Right from the start people pointed out that they had never shown that everyone with ME was deconditioned.

 

Furthermore, it is difficult to think of a pathological mechanism by which gradual increased activity could be harmful,8'9 even in the minority of patients with clear cut neuromuscular pathology.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1371151/pdf/brjgenprac00083-0040.pdf

I suspect that this represents the best evidence on which the deconditioning model is based. Persuasive, isn't it?

 

Isn't that a common excuse of medical practitioners responsible for iatrogenic harm? "I could not think of any pathological mechanism by which ..... could be harmful".

 

Being a sceptic myself, I can understand some questioning: it would be useful if we had a better understanding of how exercise might be harmful in the long term, as opposed to any short-term effects.