Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

Trish said:
I think the further information could be the NICE guideline.
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Given the NICE evidence review and the new Guidelines, does this information strengthen the argument that not withdrawing the old guideline is a potential or even probable source of harm, given it is still being cited in treatment/service planning outside the UK and give the Charity Commission very reasonable grounds to act, especially in the context of Cochrane’s grinding to a halt in producing any plan for where next. So even if they publish a protocol next week any concrete outcomes from that could be several years down the track.
 
Caroline Struthers said:
Protocol is a basic plan, often written in a publishable format (it's an easy way for academics to get an extra publication out of their research without doing any extra work). Cochrane publish protocols for all their reviews as standard, and the one for the current Exercise review is this https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200/full. It was written in 2001.
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So a process that, 3 years into, is still months away from publishing a basic outline of the work... could be expected to last, what 10-20 years? 50? 100?

I am being serious here but at current pace AIs capable of doing true high-quality systematic reviews will beat this disaster by months, if not years. It's 2 years maximum, probably 1. This process hasn't even started after 3 years, it won't even be close.

And it will produce those in seconds. I'm not sure if Cochrane will survive that, as much of their product will be shown to be too biased and of poor quality compared to the AI-produced ones.
 
rvallee said:
I am being serious here but at current pace AIs capable of doing true high-quality systematic reviews will beat this disaster by months, if not years. It's 2 years maximum, probably 1. This process hasn't even started after 3 years, it won't even be close.

And it will produce those in seconds. I'm not sure if Cochrane will survive that, as much of their product will be shown to be too biased and of poor quality compared to the AI-produced ones.
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Do you really think this will happen soon? Would be a more realistic source of hope than much of what we've seen lately.
 
rvallee said:
I am being serious here but at current pace AIs capable of doing true high-quality systematic reviews will beat this disaster by months, if not years.
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I just asked ChatGPT if the Cochrane review of exercise therapy for ME/CFS should be withdrawn. This was its reply:

“The decision to withdraw a Cochrane review is typically made by the Cochrane organization itself or by the editorial team responsible for the review. In the case of the Cochrane review of exercise therapy for ME/CFS, the review has been subject to significant controversy and criticism, particularly from patients and patient advocacy groups who feel that the review does not accurately represent the evidence on the effectiveness of exercise therapy for ME/CFS and may be harmful to patients.

In response to this criticism, the Cochrane organization has published an editorial expressing their commitment to addressing concerns and improving the review process. They have also commissioned an independent review of the ME/CFS review, which is ongoing.

As an AI language model, I cannot provide a definitive answer on whether the Cochrane review of exercise therapy for ME/CFS should be withdrawn. However, it is important for the review to accurately represent the available evidence on the effectiveness and safety of exercise therapy for ME/CFS, and for any concerns or criticisms to be addressed through a transparent and rigorous review process.”

I think we can take that as a yes!
 
Caroline Struthers said:
I complained to Charity Commission in 2018/9 https://healthycontrol.org/2019/05/20/correspondence-with-the-charity-commission/

I could write to them again as they said they would consider it again “should further information come to light”
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Not an expert - just some past involvement in complaints in very different circumstances - but: my inclination is that to be effective a complaint needs to be highly focused, in this case it would be specific to 'the harm done to patients by the publication of the Larun Review' AND 'the failure of the Charity to act in a reasonable and timely manner in addressing the harms brought to its attention'. This will require evidence - specifically it will likely need appropriate medical opinion that the Larun Review is misleading and that the statement added to the review by Cochrane is insufficient to mitigate the resulting harm - the Charity Commission has no medical expertise and it will be unlikely to find against Cochrane if the issue is just a difference of medical opinion, so the explication of harm needs to be thorough.

As mentioned above the NICE Guidance has appropriate strength, but IMO it will need the backing of medical authority to meet the CCs standard of evidence, the Medical Advisors to the ME the charities should have enough eminence to impress the CC. Clearly what I'm suggesting is something more than written complaint and would need co-operation and co-ordination between a number of parties, however based on past experience I think that anything less than this will not get any movement from the CC. I disagree that the CC has no teeth, it's more that the CC is very difficult to motivate toward using them.
https://forms.charitycommission.gov.uk/raising-concerns/
Edit to add: Raising concerns
 
Peter Trewhitt said:
Given the NICE evidence review and the new Guidelines, does this information strengthen the argument that not withdrawing the old guideline is a potential or even probable source of harm, given it is still being cited in treatment/service planning outside the UK and give the Charity Commission very reasonable grounds to act, especially in the context of Cochrane’s grinding to a halt in producing any plan for where next. So even if they publish a protocol next week any concrete outcomes from that could be several years down the track.
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Yes, good words. To which I'd add that the review is also causing harm in the UK (which is what the Charity Commission might be most concerned about), as it's causing confusion about appropriate treatments, and so slowing the implementation of the meticulously researched NICE ME/CFS guidelines.

In terms of new information coming to light, there is also the fact that significant numbers of people are developing ME/CFS as a consequence of a Covid-19 infection. Therefore, the number of people potentially harmed by the Cochrane guidance, especially in countries where the NICE guideline offers little protection, is increasing substantially. The content on, I think it was World Physiotherapy? regarding management of Long Covid might be useful to cite.
 
https://world.physio/covid-19-information-hub/long-covid
Founded in 1951, we are the sole international voice for physiotherapy. We represent more than 600,000 physiotherapists worldwide, through our 127 member organisations. World Physiotherapy operates as a non-profit organisation and is registered as a charity (World Confederation for Physical Therapy) in the UK.
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Among a sample of 3,762 people living with Long COVID across 56 countries, 72% reported post- exertional symptom exacerbation.16 People living with Long COVID describe the episodic nature of Long COVID symptoms and impairments,15,16,19,38,83 and note exercise, physical activity, or cognitive exertion as common triggers for symptom relapse.16,38,40 While there is evidence that physical activity can reduce fatigue in some chronic conditions where fatigue is a common symptom,93-97 significant negative impact can result if physical activity is not carefully tailored to the individual.98
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Quota-based graded exercise programmes can result in harms to patients with post-exertional symptom exacerbation.89,99-102 As such, in 2017 the United States Centers for Disease Control and Prevention (CDC) removed graded exercise therapy from ME/CFS guidelines,89,99 and the United Kingdom National Institute of Health and Care Excellence (NICE) recently removed graded exercise therapy from draft ME/CFS guidelines.91 Recognising this, NICE cautioned against the use of graded exercise therapy for people recovering from COVID-19.19,103,104

WHO recommends that Long COVID rehabilitation should include educating people about resuming everyday activities conservatively, at an appropriate pace that is safe and manageable for energy levels within the limits of current symptoms.105 Exertion should not be pushed to the point of fatigue or symptom exacerbation, both during and in the days following exertion.
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Ariel said:
Do you really think this will happen soon? Would be a more realistic source of hope than much of what we've seen lately.
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I don't know if it will happen soon, but it will be possible within 1-2 years. AI systems like this have to be trained, so someone would have to spend resources on it. This is mostly money and labor.

But being to copy (well, do a lot better and faster anyway) the process of systematic reviews is on the low-end of what AI will be capable of. Real systematic reviews, not cherry-picking that arbitrarily filters out 99% and pretends this isn't a reflection of the evidence.

Only question is who would build such a system. It would essentially make Cochrane mostly obsolete, so that could be awkward. It will happen for sure, but the uncertainty is political more than technical. Lots of jobs doing nothing but this GIGO process. And removing people from the loop removes a lot of the bias that keep many of those jobs going.

We all know how this review would look like if the Cochrane handbook were applied, I don't think a single study actually qualifies. For sure it would not have come to the conclusion that this is worth a damn.
 
Robert 1973 said:
I just asked ChatGPT if the Cochrane review of exercise therapy for ME/CFS should be withdrawn. This was its reply:

“The decision to withdraw a Cochrane review is typically made by the Cochrane organization itself or by the editorial team responsible for the review. In the case of the Cochrane review of exercise therapy for ME/CFS, the review has been subject to significant controversy and criticism, particularly from patients and patient advocacy groups who feel that the review does not accurately represent the evidence on the effectiveness of exercise therapy for ME/CFS and may be harmful to patients.

In response to this criticism, the Cochrane organization has published an editorial expressing their commitment to addressing concerns and improving the review process. They have also commissioned an independent review of the ME/CFS review, which is ongoing.

As an AI language model, I cannot provide a definitive answer on whether the Cochrane review of exercise therapy for ME/CFS should be withdrawn. However, it is important for the review to accurately represent the available evidence on the effectiveness and safety of exercise therapy for ME/CFS, and for any concerns or criticisms to be addressed through a transparent and rigorous review process.”

I think we can take that as a yes!
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Damn this is impressive.

And really look at this like the earliest smart phones and how much better they are today, except accelerate the progress 10x, and make it logarithmic.
 
Robert 1973 said:
I just asked ChatGPT if the Cochrane review of exercise therapy for ME/CFS should be withdrawn. This was its reply:

“The decision to withdraw a Cochrane review is typically made by the Cochrane organization itself or by the editorial team responsible for the review. In the case of the Cochrane review of exercise therapy for ME/CFS, the review has been subject to significant controversy and criticism, particularly from patients and patient advocacy groups who feel that the review does not accurately represent the evidence on the effectiveness of exercise therapy for ME/CFS and may be harmful to patients.

In response to this criticism, the Cochrane organization has published an editorial expressing their commitment to addressing concerns and improving the review process. They have also commissioned an independent review of the ME/CFS review, which is ongoing.

As an AI language model, I cannot provide a definitive answer on whether the Cochrane review of exercise therapy for ME/CFS should be withdrawn. However, it is important for the review to accurately represent the available evidence on the effectiveness and safety of exercise therapy for ME/CFS, and for any concerns or criticisms to be addressed through a transparent and rigorous review process.”

I think we can take that as a yes!
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Maybe chatGPT can give us a decent reply to when we’ll actually get an update with some substance in it.
 
Hutan said:
Yes, good words. To which I'd add that the review is also causing harm in the UK (which is what the Charity Commission might be most concerned about), as it's causing confusion about appropriate treatments, and so slowing the implementation of the meticulously researched NICE ME/CFS guidelines.

In terms of new information coming to light, there is also the fact that significant numbers of people are developing ME/CFS as a consequence of a Covid-19 infection. Therefore, the number of people potentially harmed by the Cochrane guidance, especially in countries where the NICE guideline offers little protection, is increasing substantially. The content on, I think it was World Physiotherapy? regarding management of Long Covid might be useful to cite.
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I noticed that the exercise review now "used" in the WHO "living" guideline on managing COVID 19 https://www.cochranelibrary.com/cds...CD003200.pub8/related-content#guidelines_data. I have not found where it is used though. Are they conflating fatigue with ME/CFS? It's completely bizarre.
 
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