Graded exercise therapy for ME/CFS is not effective and unsafe. Re-analysis of a Cochrane review (2018) Health Psychology / Vink

Yes I realise on the one hand that this is the difficult bit, just like with any other treatment, but on the other hand every patient can tell you that if he goes over his limit, and that is what GET forces you to do, then you will get a relapse and the more you go over your limit the bigger the relapse and the less likely you are to recover from it.

Therefore by definition GET is harmful for this disease and CBT for this disease often contains an element of it and therefore that is harmful too

 

Yes.

Improvement (which is a pre-loaded label anyway), is really about change from an initial condition, either up or down. Conceptually a single parameter with a range spanning both negative and positive. (And yes, I fully appreciate that there can be many separate measures that contribute to that, but it's the concept I'm getting at).

It feels like if investigators are really interested and determined to find true answers, then they should be prepared to investigate the full +ve/-ve range of health change (a.k.a. 'improvement'), and wherever possible seek evidence no matter where in that range it falls, not just if it happens to be positive. This would likely require more thought on design and methodology, and maybe less pursuit of pleasing the 'right' people. Negative 'improvement' is really the other side of the same coin - it's all health change from the initial condition. If you investigate changes in temperature, you don't treat the negative values as something totally different to the positive ones, and thereby ignore the negative ones.

(In case it's not obvious from the above, I'm agreeing with you by the way ).

 

Yes, indeed.

If Laurun et al had reported on objective outcome measures this would have shown up in the Cochrane review.

 

There is pretty much no way these figures are for metres. I presume instead they are for feet. The equivalent numbers in metres are: 407 and 401. Comment: this is not a criticism of the Vink paper

 

Yes this is pretty shocking.

 

Just to be rigourous: the Cochrane review didn't report objective outcomes; this wording gives the impression it did.

 

I see what you mean but they refers to the trials not to the Review

 

I'd think the very fact that researchers are using exercise challenges specifically because exercise exacerbate the disease adds further support to the view that exercise as a treatment puts patients at risk of harm. And these studies are investigating and reporting increased symptoms, decrease in functioning, and changes in brain function, gene expression, immune markers, blood flow, etc that are occurring post-exertion.

Edited to add:
Regarding CBT - In addition to the risk of physical harm, intentionally trying to convince patients with an organic disease that they are mistaken and its just false cognitions is abusive and psychically harmful

 

In another of the bitter ironies of ME, we can't do a large scale trial of 2 day CPET testing because it would be unethical as some of the participants in the small trials have not recovered to where they were before they did the exercise.

Yet because there are no large scale trials the BPSers are able to continue to say exercise is safe and insist it is the best treatment.

They insist there is no evidence of harms except for patient anecdote but how can you do a large scale trial to see how much worse people get and for how long? Anecdote is surely all we have of harms for any disease.

 

The sooner the better.

 

Thank you for all your posts and comments Dolphin

 

Didn't know where to post this and had not seen it before (the table in the reply):
https://twitter.com/user/status/1097844739179720706

 

Pretty sure I've seen the table before, possibly in a blog by Spoonseeker or @JohnTheJack ?