Graded exercise therapy doesn’t restore the ability to work in ME/CFS. Rethinking of a Cochrane review, 2020, Vink & Vink-Niese

Andy

Andy

Retired committee member
BACKGROUND: Cochrane recently amended its exercise review for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in response to an official complaint.

OBJECTIVE: To determine if the amended review has addressed the concerns raised about the previous review and if exercise is an effective treatment that restores the ability to work in ME/CFS.

METHOD: The authors reviewed the amended Cochrane exercise review and the eight trials in it by paying particular interest to the objective outcomes. We also summarised the recently published review of work rehabilitation and medical retirement for ME/CFS.

RESULTS: The Cochrane review concluded that graded exercise therapy (GET) improves fatigue at the end of treatment compared to no-treatment. However, the review did not consider the unreliability of subjective outcomes in non-blinded trials, the objective outcomes which showed that GET is not effective, or the serious flaws of the studies included in the review. These flaws included badly matched control groups, relying on an unreliable fatigue instrument as primary outcome, outcome switching, p-hacking, ignoring evidence of harms, etc. The review did also not take into account that GET does not restore the ability to work.

CONCLUSION: GET not only fails to objectively improve function significantly or to restore the ability to work, but it’s also detrimental to the health of≥50% of patients, according to a multitude of patient surveys. Consequently, it should not be recommended.
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Open access, https://content.iospress.com/articles/work/wor203174
Sci hub, https://sci-hub.tw/10.3233/WOR-203174

ETA: Now open access.
 
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Very thorough. Hard to argue that even a single concern was actually addressed.

Evidence-based medicine needs to do at least 10x better than this to provide meaningful benefits, it is currently perfectly content with the illusion of a minimal possible benefit being inexplicably argued as a complete and total cure, absolute mismatch between the claims and the actual evidence. At the very least this kind of low-level drivel needs to be eliminated. A professional field of science is judged by its worst outputs, not its best. There is not supposed to be anything near that level of inapplicable opinion-based illusionary evidence.

And the concept of minimally clinical significance needs to change to a concept of actual significance. The tyranny of low expectations only creates a race to the bottom and in a field that was already at a shockingly low level of competence, it only serves to lower that bottom even further, degrading the very value and credibility of all sciences.
 
Maybe rather than commissioning another review using its not fit for purpose tools Cochrane should simply decide whether it accepts the verdict of this one - and if not why not. The due diligence has been done. All that is required is assessment of the conclusions. But maybe Cochrane is more interested in turning its handle than the right answer.
 
Interesting that the comment by Winarick suggests CFS may not really exist. By suggesting that it's not a valid construct he means that it could be a social construct rather than a description of a thing that really exists in nature.

What does it say that this comment is made in response to an analysis that says graded exercise does not restore ability to work in CFS? Is this the best counterargument he could find? Well, even if CFS isn't a valid construct, GET still doesn't work.
 
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I think poor Dr Winarick is a bit challenged on the valid construct front himself:


ABOUT DR. DANIEL WINARICK


As a licensed clinical psychologist in Manhattan, my central priority is to bring happiness and well-being to your life by restoring your mental balance. I want to help you break free from old habits, develop healthy coping skills, and find new ways to respond to life's challenging situations. I specialize in treating a range of mental health conditions including depression, anxiety, bipolar disorder, borderline personality disorder, family

I suspect his message is that there is no point in talking about either GET or CFS when what you dealing with is unhappy people who would do well to be relieved of a fee to attend his rooms.
 
As a licensed clinical psychologist in Manhattan, my central priority is to bring happiness and well-being to your life by restoring your mental balance. I want to help you break free from old habits, develop healthy coping skills, and find new ways to respond to life's challenging situations.
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So, a wellness life coach?

I specialize in treating a range of mental health conditions including depression, anxiety, bipolar disorder, borderline personality disorder, family
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Kinda the opposite of specialising, isn't it?

In fairness, the guy does say (in response to Michiel Tack) that:

I think it’s a disease that I know little about.

Admission of ignorance is a good place to start learning.
 
Let's forget about Winarick and his ignorance. Hopefully he is of no consequence to us.

Getting back to this paper, I just want to thank Mark Vink and Friso Vink-Niese for this paper and all the work that went into it. It is shocking that Cochrane have not withdrawn the review, but given that it has been published, it's so important that we have an intelligent counter argument.
 
Trish said:
Getting back to this paper, I just want to thank Mark Vink and Friso Vink-Niese for this paper and all the work that went into it. It is shocking that Cochrane have not withdrawn the review, but given that it has been published, it's so important that we have an intelligent counter argument.
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Especially given that this advice will apply to the COVID-19 cohort, the review will be explicitly cited as evidence. This is harm that could be prevented right here and now, the evidence is indisputable. But the people responsible for the ME-BPS model can't even see the connection because they reject the infectious hypothesis as irrelevant. One clear problem with ME being banished to the mental disorders group, they can't see what they deny exists.

I fully expect there to be lawsuits from the post-COVID cohort based precisely on that. Successful ones. Independent of the ME patient population. And very visible, will severely harm the Cochrane brand. I would really like for Cochrane to do the right thing here, this can be entirely avoided by simply doing that and stop stroking the egos of the people who fabricated this ideology.

I don't even know otherwise what the end game is. Running around in circles for decades is not sustainable. There aren't even any benefits, everyone hates it. Everyone is angry, for different motivations but the underlying reasons are the same: made-up stuff simply does not belong in clinical evidence.
 
Trish said:
@Hilda Bastian. Is it possible for this to be accepted by Cochrane as a review?
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It could be converted to the Cochrane format easily enough if Vink & Vink-Niese agreed to put their text data and analyses into the Review Manager software Cochrane uses to produce its reviews. (https://training.cochrane.org/online-learning/core-software-cochrane-reviews/revman). I doubt Cochrane would accept that solution unless the independent advisory group advocated for it. It would save a lot of time and money, and the amended review still saying there is "moderate" evidence that GET has a "non-zero" effect on fatigue could be withdrawn sooner rather than later.
 
Barry said:
Although this doesn't surprise me in the least, I'd not appreciated it until mentioned here.
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Especially telling that they understand that this is important, they just don't care. Some of their comments following the nanoneedle paper were that it may not differentiate with other diseases, pretty sure depression was suggested. I've seen similar comments elsewhere.

Mainly though it's because to them it's basically the same thing, but they are very slimy in their use of language to keep implausible deniability. Their writings are filled with evidence of that but apparently it requires them affirming under it oath or something.

But since most physicians believe the same, it's not a problem that can be addressed since it's not a problem to them.

So it is effectively useless to help us, but very useful at suppressing us. And sadly we know which is more important.
 
Hi. News on my request that Cochrane withdraw the 2008 CBT for CFS review which states that CBT is effective. https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD001027.pub2/read-comments

Cochrane changed its withdrawal policy in 2019 which means that it doesn't matter how out of date a review is, it won't be withdrawn unless there is consensus that it causes harm - ie. never. So the only thing they could do was put a note on it to say it's not current. I don't think this is progression in terms of policy for Cochrane, but brings Cochrane more in line with other journals. Why this should be the direction to go in, I don't know. Cochrane used to have a policy to maintain reviews by updating them every two years, or more often if necessary. This is what Cochrane reviewers agreed to do when they published a protocol and review. The policy was never followed strictly when I worked for Cochrane. Unsurprising as Cochrane relies on volunteers to write reviews, and having being involved to some extent in working with Cochrane authors on updates, we had very little control over what they did after they had published the first version. This model of producing reliable up to date evidence doesn't work. It would be more constructive to repurpose reviews as campaign documents to highlight where patient groups have been poorly served by primary research (eg. people with ME) and prescribe how primary researchers could do better in the future. Even going as far as writing trial protocols and involving patients in the choice of outcome measures. These research blueprints could be sent to funders to help them prioritise what to fund, and/or be put out for tender to research groups.
 
Caroline Struthers said:
Hi. News on my request that Cochrane withdraw the 2008 CBT for CFS review which states that CBT is effective. https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD001027.pub2/read-comments

Cochrane changed its withdrawal policy in 2019 which means that it doesn't matter how out of date a review is, it won't be withdrawn unless there is consensus that it causes harm - ie. never. So the only thing they could do was put a note on it to say it's not current. I don't think this is progression in terms of policy for Cochrane, but brings Cochrane more in line with other journals. Why this should be the direction to go in, I don't know. Cochrane used to have a policy to maintain reviews by updating them every two years, or more often if necessary. This is what Cochrane reviewers agreed to do when they published a protocol and review. The policy was never followed strictly when I worked for Cochrane. Unsurprising as Cochrane relies on volunteers to write reviews, and having being involved to some extent in working with Cochrane authors on updates, we had very little control over what they did after they had published the first version. This model of producing reliable up to date evidence doesn't work. It would be more constructive to repurpose reviews as campaign documents to highlight where patient groups have been poorly served by primary research (eg. people with ME) and prescribe how primary researchers could do better in the future. Even going as far as writing trial protocols and involving patients in the choice of outcome measures. These research blueprints could be sent to funders to help them prioritise what to fund, and/or be put out for tender to research groups.
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Makes me think maybe Cochrane has simply outlived its usefulness. If things evolve to a point where something no longer functions effectively because it's stuck in a time warp and can no longer evolve, then what's the point.
 
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