Evidence of GET (and exercise generally) being helpful or harmful in ME/CFS and related conditions

There's a thread dating from four years ago about GET and whether there is good evidence it is actually harmful. I was wondering whether there has been any new evidence since then. (old thread is here: https://s4me.info/threads/2-day-cpe...at-get-is-harmful-and-is-it-a-biomarker.5622/)
I apologise for the odd title but it was the only way I could get the posting of the comment to work. (Title now edited)

 

I just want to add that there’s a third option in addition to being beneficial and harmful - no effect.

We don’t have to prove harm, we just have to prove that it doesn’t help.

 

This is an important laying out of what needs to be discussed isn't it?

If we are talking about whether using exercise in some form as a therapy then we have so many bps papers that chose to do poor methods for various reasons (and it seemed to get worse indicating the bias had to increase in attempts to 'prove' the hypothesis vs the null) that there has to be the question of whether even if they chose to break with orthodoxy in not having a null hypothesis, the sheer number and amount of time they have spent trying to prove the hypothesis sort of makes that null 'proven'.

So I agree, it is a twisting of the rules in order to pretend we have to prove a negative , or somehow show harm and then battle them claiming 'prove it was specifically that' etc. (when really if any of these worked then the GET'd cohort of the last decades vs a control would be 10yrs on significantly better and they'd have proof, not just be brazenly inferring it works - that's a tricky one of course because of the Krypton Factor issue where of course those who were recovering anyway would be the ones who completed it)

And then there is the interesting question of whether really those also tell us something about 'dose effect' being null hypothesis somewhat proven too, given the cohorts they used and the fact that if there were any issue of 'it must just be the right dose' they have put enough numbers of people through it that they would have been able to have found and proven said cohort of people who had 'the goldilocks amount' from a certain proportion having some substantial effect that would have led some of them to have written about it or expanded on it or used that to inform their research (and thereby wouldn't have still been getting 'no effect' and having to rely on bias)


If we are talking about for example people in the workplace or everyday life, which seems to be getting more difficult with eg parking being moved further from offices, shops, homes, and all sorts of schemes claiming to be about making people healthier by nudging exercise then there is a different need - something along the lines of 'proving' or just not being disbelieved on what we say re: over-exertion.

And then within that over-exertion of course there is the issue of the sophists using a mild persons example on a severe person (and suggesting the difference is effort, or the latest 'some term alluding to madness aka 19thCentury) or everyone thinking that people should 'give up other things to prioritise their thing/the thing that might involve them offering an adjustment' eg we all have to give up all social life before any reduction at work? The 'you managed to do that once before, so can again@ etc.

And that informal concept of if you just breach your boundaries a bit it wouldn't hurt and might mean progress etc. The belief in which is so strong they won't let the person speak or be believed on what they 'did' ... which is retrospectively assumed based merely on 'whether they progressed' (if not they must have done too little)

I think what I mean is it might be quite useful to organise what we even need.

On that note, whilst it isn't GET-specific, I seem to remember the physiosforme home-based study (1-2yrs ago?) was really promising to me as a start because of its nature of being able to get close to measuring people without causing exertion/PEM from the measuring itself when it normally involves a trip to a lab or stay overnight somewhere that isn't the person's home etc. It's cumulative/continuous timespan rather than just snapshot when we don't yet know when PEM would hit, or deterioration from doing x in preceding y time would hit. And also of course because of its cohort including more severe people than is often the case.

 

it is a sidenote as this is about vascular EDS, but not unrelated as it seems their charities are sponsoring 'groundbreaking research into exercise'

Exciting new research into exercise and vEDS announced. - The Ehlers-Danlos Support UK


It is worth a read on the details in this article.

Particularly reading the following point from one of their charities (which doesn't say out loud, but makes a note that we all would have made back in the day of the PACE lies - of 'well if you are telling me that it can't harm me then it is worth a try', little did we know a certain video and individual(s) had actively decided to encourage eg GPs to tell this lie):

And comparing it to the listed principal investigators and team and many of them being rehab-based:

 

Unless someone can give a counterexample I would suggest:

It's quite another thing to suggest that increasing activity, and specifically exercise, cures any illness or disease.

 

The effects on inactivity is associated with many negative health outcomes, so it could be argued that a certain amount of regular exercise could be an effective preventative measure in that regard.

 

That we are all agreed on but it has nothing to do with making illness better. The extraordinary thing is that so few people who advocate exercise seem to get this point.

 

Completely agree!

 

We need to prove harm so we can get treated with consideration to prevent deterioration. This is especially true for permanent deterioraters.

 

We absolutely should prove harm if we can. My point was that it shouldn’t be necessary to prove harm to stop the use of the treatment because inefficient treatments should be discontinued.

 

Not too many, other than BPS perhaps, would still argue that GET is helpful these days. I know that it didn't work for me because I tried it, far too long. But we need to separate exercise from GET. I remember how slow walk with frequent rest every other day helped my mood and sleep when I was in the deep end. It may be just an anecdote, but it still leaves possibility that it helps *some* patients.

 

That’s all but two of the 20+ medical professionals I’ve dealt with during the last three years.

 

Dang, sorry to hear that. I'm just glad I don't deal with medical professionals for ME/CFS.