Cochrane Review: 'Exercise therapy for chronic fatigue syndrome', Larun et al. - New version October 2019 and new date December 2024

I notice that “CFS” is listed under both mental health and neurology. Has it always been that way? Have they decided to simply add CFS to neurology without removing it from mental health?

 

I think that this is the key thing, and a good indication of what they really think about ME/CFS patients.

 

I was curious to see how "probably" is specifically defined, and what certainty it gives.

Really none.

The Compact Oxford English Dictionary defines probably as: " almost certainly".

The word "almost" is defined as: "very nearly".

Here is a WordReference.com discussion on what "probably" means to members of that forum; one of the suggestions is "anything greater than 50%.":

https://forum.wordreference.com/threads/probably-what-percent.2949969/


I would not feel confident in the certainty of a medical outcome if a practitioner told me the therapy, or procedure would "probably" work.

There are no real guarantees in medicine, but if something is maybe going to work only 50.1% of the time, the risks of the procedure may outweigh the benefits.

On the other hand, I don't have a broad enough knowledge in this; perhaps there are many medical procedures that will only probably work - and how certain that is, is up for interpretation.

 

"Probably", as we are aware is a qualifier indicating uncertainty: https://writingcenter.unc.edu/tips-and-tools/qualifiers/

Wishy-washy.

"Probably" means sort of, kind of, maybe....

 

"Selective reporting (reporting bias) Low risk
The protocol and the statistical analysis plan were not formally published prior to recruitment of participants, and some readers therefore claim the study should be viewed as being a post hoc study. The study authors oppose this, and have published a minute from a Trial Steering Committee (TSC) meeting stating that any changes made to the analysis since the original protocol was agreed by TSC and signed oN before the analysis commenced."


Unpublished protocol and stat analysis; I thought this was imperative to have up front - not done in a private meeting.

More exceptions allowed for these types of studies.

No one in medicine should be reassured about referring their patients for this "therapy".

 

Is there still time for comments on this study to go to the NICE guidelines committee?

I think the deadline is October 4th, but could be my MEmory.

 

Probably is certainly way less than would normally be considered adequate evidence for efficacy of a treatment. I think we would in medicine generally expect to be 90% sure, preferably 95%. But probably at least has a standard meaning to medics. If we say someone probably has measles it is understood that we think it is more likely than not.

But if we think on the basis of pilot studies that there is a 50+% chance that the treatment works that is quite different from saying it works in 50+% of people - these are unrelated. We may well think that there is a 50+% chance of it working in20% of people (which for some things might still be very useful) or in 85% of people.

 

I've only skimmed through it, but what a depressing read. They do have to note the lack of evidence for benefit at follow-up, but people Cochrane clearly haven't taken this review seriously, and chose to let the authors get away with some utter BS. The selective reporting section on PACE shows what these authors, and Cochrane, are. The general presumption that these questionnaires are valid for reliably measuring things like fatigue seems to go completely unexplored.

Some smaller things I thought I'd pull out that I haven't seen others mention but I might want to come back to:

For "Work and employment status" they say NS (not stated) for White 2011 - but doesn't their cost-effectiveness paper provide that info?

Looks like we've got some fun reading:

It looks like they used standard deviations from the Crawley paper on patients attending clinics. Someone mentioned that this is a populations with an artificially constrained SD as at the top end there's a cut off for eligibility, and at the bottom end there's a requirement to be able to attend the clinics. I wonder if this is an issue that's addressed in Schünemann 2011?

Their MID stuff seems to have come up with a way of classing small changes as an important difference. They've cited work that's unrelated to CFS to do this, and I'm not familiar with it. A lot of the research I've seen on MID is very poor anyway, but it seems particularly odd using research on a completely different patient group to define MID in CFS:

 

For fucks sake!

 

The review says that exercise therapy probably reduces fatigue at the end of treatment in comparison to a passive control.

A passive control is inadequate and it's impossible to say how much of the difference between the treament and control groups is due to specific treatment effect as opposed to nonspecific things.

 

Impressive linguistic gymnastics if nothing else.

So would our best bet now be to make sure the 'right' patient-advocacy groups get into the promised independent advisory group - we can probably (oops, did I say 'probably'?) think of some 'wrong' ones we don't want to be involved? They, the 'right' patient-advocacy groups, could then push for any new protocol to specify that studies included need to look at PwME with PEM, plus attempt to address all the other weakness in the current review - they'll have their work cut out...

 

Bump.
Very curious. Does anyone know?

 

Bump. I was under the impression it was only classified as mental health, so this may be a positive change

 

so the house of cards continues until after the NICE review, how convenient.

It would be interesting to know how many other illnesses with the same type of evidence base are under/ due for review in the next couple of years

I generally find most medics have a poorer grasp of statistics and I have ( so very poor); they tend to just hoover things up that confirm their existing cognitive constructs.

Things seem destined to follow the British tradition for controversial change - death or retirement as as precursor.

 

Blog from Hilda Bastian

https://blogs.plos.org/absolutely-m...n-of-the-cochrane-review-on-exercise-and-cfs/

 

And article from Emerge Aus on the news

https://emerge.org.au/cochrane-has-...ew-of-graded-exercise-therapy-get-for-me-cfs/

 

Thanks for posting Hilda’s post about the update, @Andy. I think her conclusion really sums the whole thing up really well, especially that Cochrane’s decision to not withdraw this review looks political, that Bob’s complaint has been absolutely crucial to getting any change and that Cochrane has been resistant to consumer involvement.

https://blogs.plos.org/absolutely-m...n-of-the-cochrane-review-on-exercise-and-cfs/

 

have only gone through the main page but I counted 24 (including the plain english version)