Guided graded exercise self-help for chronic fatigue syndrome: Patient experiences and perceptions, 2018, Cheshire et al

That is a very odd story about someone who says they used to do triathlon but apparently, after becoming ill, never thought for themselves to try pushing a little more. Does one have to be told that by a therapist? The problem should be in preventing such people from exercising.

 

Not particularly exciting but just shows that lots of people would be motivated to try to use exercise to help themselves.

If all that was required to recover was exercise, a cheap or free therapy, large numbers of people would have recovered.

While some psychological therapies might have some stigma attached to them which might make the odd person reluctant to try them, exercise doesn't really have the same problem.

 

I think most people with ME or CFS would need more encouragement to pace and do less on some days rather than encouragement to keep pushing themselves.

 

Recovery percentages weren't presented for the study. However, the people with better baseline scores did a lot worse. It's quite possible nobody recovered. Improving a bit is not recovery.

 

Exactly this point. Over and over again .

 

I was wrong, couldn't find it that day, but searching for something else it popped up now It's still available here:

https://www.qmul.ac.uk/wolfson/medi...ects/GET-guide-booklet-version-1-22062010.pdf

 

And now immortalised in the 'wayback machine' !

 

A bit irritating, given that people didn't necessarily do that well in this study, even by the subjective outcome measures reported (though it is possible that there were a few individuals within the group who did well but we don't have data on them)

So this therapy doesn't work, so they say a very similar additional approach "may benefit", with no evidence.

Such claims by a drug company would be heavily scrutinised, I think.

 

All speculation. They didn't measure these things.

They're suggesting the patients are to blame for their lack of improvement/their worsening.

Just to point out again that recovery wasn't measured in this study, even though they refer to recovery a number of times in this paper.

That was a small study. When the study was replicated in a larger trial, the FINE Trial, there was little improvement and no improvement on the step test.

Yuck

 

I think this is actually a good point. And why a coercive approach is very questionable e.g. Peter White has turned down at least one individual from a payment saying they could get better with CBT and/or GET.
https://forums.moneysavingexpert.com/showthread.php?t=2356683

 

Good that the underlined bit was explicitly said but a reminder that overall the subjective results in this trial weren't very good.

 

I'm not sure that results were good enough to justify this.

And is no mention that convincing patients that their symptoms are down to deconditioning and the like could be risky.

 

Though pre-illness knowledge may not be a good basis to approach activity management in ME/CFS, it could even be detrimental.

 

Just to be negative: significant others could encourage them to exercise when really they should be resting or at least not exercising.

What does a "more useful understanding of GES" mean? The impression seems to be anything which gets people to exercise is good whether or not there is any basis for it.

 

Illness duration almost certainly affects cognitions specific to how patients report symptoms to medical practitioners and on questionnaires. My argument is the opposite of the authors, namely that such changes lead to more accurate reporting, with reduced bias due to optimism and the various response/participation biases that are uncontrolled in nonblinded studies.

 

This is frustrating to me. I know Peter White has done this before: given the impression the symptoms people with ME/CFS feel after exercising are just like those of people who are unfit.

 

The reporting of harms in trials of graded exercise therapy has not been good. I don't think they should be making such claims to patients.

 

I wonder what they would have said.