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

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.

 

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.

 

Do you really think this will happen soon? Would be a more realistic source of hope than much of what we've seen lately.

 

I just asked ChatGPT if the Cochrane review of exercise therapy for ME/CFS should be withdrawn.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model, I cannot provide a definitive answer on whether the Cochrane review of exercise therapy for ME/CFS should be withdrawn.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!

 

Please do, Caroline.

I wonder if it would be worth the effort of trying to get it co-signed by ME charities etc.

 

We clearly need ChatGPT in our advocacy team!

Be fun to send the result to one of the Cochrane email addresses, if you have the energy.

 

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.

Edit to add: Raising concerns

 

That's a better response than I was expecting. Was this ChatGPT 4 or the older one? I wonder which iteration we'll be on by the time this addressed!

 

Worthy of Sir Humphrey?

 

ChatGPT-4 via https://chat.openai.com/chat

 

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.

 

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.

 

--- an impolite abbreviation comes to mind --- what is "As an AI language model".

 

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.

 

see my post here
https://www.s4me.info/threads/indep...ed-by-hilda-bastian.13645/page-99#post-448445