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

Jonathan Edwards said:
How do we know there is a causal relation, @Mark Vink ? This is the difficult bit.
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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
 
Mark Vink said:
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
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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 :) ).
 
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Although it was concluded that graded exercise appears to be an effective treatment for CFS, patients showed no objective improvement. In fact, there was a significant physical deterioration after ‘effective’ GET as seen in the large drop in VO2max of 15 per cent. Since there is an inverse relation between fatigue and activity (Rongen-van Dartel et al., 2014), a decrease in fatigue should have been matched by an objective increase in physical functioning.
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Yes, indeed.

Moss-Morris et al. (2005) said:
A decrease in symptom focusing rather than an increase in fitness mediated the treatment effect. Graded exercise appears to be an effective treatment for CFS and it operates in part by reducing the degree to which patients focus on their symptoms.
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If Laurun et al had reported on objective outcome measures this would have shown up in the Cochrane review.
 
Jason et al. (2007)

It states that the better physical functioning scores for relaxation therapy were because the relaxation group (RELAX) had a higher mean score at baseline than the anaerobic activity group (ACT), 53.77 and 39.17, respectively. However, the objective 6-minute walk test results at baseline were similar: 1335 (ACT) versus 1317 (RELAX; higher scores indicating better outcome).
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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
 
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The flaws in the review and the trials, as discussed above, all created a bias in favour of the exercise intervention. Despite these flaws, they have found no significant evidence of objective improvement. The analysis of the objective outcomes in the trials provides sufficient evidence to conclude GET is an ineffective treatment for ME/CFS.
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Just to be rigourous: the Cochrane review didn't report objective outcomes; this wording gives the impression it did.
 
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Mark Vink said:
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
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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
 
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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.
 
Mithriel said:
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.
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Which is why we need an in vitro means of testing for PEM, so the patient is not at risk. Also because it will open major avenues for broader lab investigations and testing.
 
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