Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

I don't have a specific suggestion as to how and can't help much but perhaps contacting the Long Covid groups and getting them to sign on. Not all of them see the overlap with them, or want anything to do with ME/CFS, but it should not take much of a leap to understand that clinicians definitely do and that this flawed review plays a big role in why GET continues to be the main recommendation for LC, ignoring PEM.

The LC community definitely knows about PEM. Whether they agree or not that they have anything to do with ME/CFS, or think that they can continue keeping their heads in the sand about it, most definitely know and understand that PEM is a major problem and that recommendations to exercise don't make sense to them anymore than they do for us. All they need to understand from there is the importance of this review.

The bigger problem is that the LC community isn't well organized yet, it's still mostly ad hoc. There must be a list somewhere, though.

 

Oh, and contacting the IAG members. Some questions to ask them have been put forward in another thread, the Bastian talk page I think. Cochrane and Bastian haven't told us anything in years. That only leaves the IAG members, and the time has long passed to pretend that this process is anything but a sham. I don't think there's any value in them remaining on board, though that's their decision, but it'd be useful to know what is going on with them. If anything.

 

Are there any M.E. specific or friendly journalists who could do a good job of getting out the story in a few different angles

something like ‘it’s been x amount of time, just stonewalled and no withdrawal’ and then nail really getting across why this matters and the significance

I'd also like the clear message (seeing the same thing from the Oslo thing), given the timing, underlining how these old people have been using the trick of causing damage with the treatments and then selling the need for more based on non-sequitur pitches claiming we 'are a cost' (or should be given our debility, but we ask for and get no treatment) and so then they suggest they are giving more money for doing the same thing. Again. And how this revolving tactic has built how kingdoms that offer little worth or use. Siphoning off funding that would have been for resources that were much needed by all including pwme. Telling those left short-staffed they are overworked because of us the very people they'd be barring from entry for so long anyway.

Because now it's been so long it shows that those involved with keeping that up there or ignoring the Nice stuff, well it's not about not knowing or not knowing how to help, it's not about not having the science or analysis or there ever being a debate now all that crud over decades has been analysed to 'surely you've proved your null based on how much you can manipulate your research and still get nothing'.

SO it's about how even when a subject and infrastructure claiming to be based on science, and to have safeguards and to be about 'helping' or safety, doesn't get the answer that 'works' for certain interested parties - well how all those claims count for nothing and something will make sure it will never go over the line. Or is it just the 'instincts' of these systems, to automatically delay, defer etc?

It feels about as soon as they realised the truth isn't going to be what works for them it's stalling for time looking for new ways to crop up that it can be manipulated back.

After 5yrs of having done nothing other than play patients a review flagged as flawed finally just needs to be withdrawn.

And the issue with it needs to be so well written-up by some good journalists that can unbundle the significance of this that they show that Cochrane can't both keep this, and keep playing this game and survive. Because it is clear by now that unless it comes down they are keeping up something that is absolutely against everything they claim to stand for - so which are they? You can't be both propaganda and conflicted and claim to be some overview on science.

And just navigate that by ignoring withdrawing something harmful and wrong pretending that's 'just a grey area' - 5 years. And no proper intention at all. And the new patient-led review didn't need the old one not withdrawn in order to proceed anyway!

 

I have heard from one IAG member who said they wanted to clarify something regarding the confidentiality rules (there is no NDA). They got one response but then wanted further clarification and have not heard back yet.

 

The only things I can think of that would put pressure on an organisation stonewalling are publicity and funding. So as others have suggested trying to get journalists involved, or contacting their funding and partner organisations, which given the predominance of government funding from the UK, Denmark, US and Germany probably means people from those countries contacting relevant elected officials.

 

Given Hilda’s personal Blog page on this is obviously failing as a meaningful channel of communication, with no indication that information there is passed to Cochrane or the IAG, this reinforces others’ comments that we need to address the issue with Cochrane’s funding sources, relevant regulatory bodies and the media.

I have submitted another comment to Hilda’s Blog without any optimism. I have reproduced it on the members only thread but agree with @Trish ’s suggestion that we discuss the issues more publicly now, so am also copying it here.

 

Do we know when the ‘writing group’ submitted their draft ‘protocol’ to Cochrane in preparation for consultation?

Given the writing group were relatively punctual is the subsequent inaction a deliberate choice by Cochrane or the failure of the IAG for whatever reasons, be it Cochrane’s influence or Hilda’s choice?

 

Thank you @Trish.

 

And some sort of temporary editorial note on the review that we were told would happen some time but we have never heard anything about since.

Has the note been written? Waiting on Cochrane for approval? Waiting on the IAG for review? Waiting on Cochrane for publication? Has any work been done at all? Do bears poop in woods?! We don't know, they haven't shared anything of substance about anything yet.

 

What was the date the note was promised ‘to keep things safer in the interim , given without it then it’s wrong’ because apparently proper action would take too long?

is it a year? I mean that’s inexcusable if it has gif to that. Interim emergency measures have no excuse given there is the correspondence saying there is no / low effect at medium significance or vice versa ie no effect and yet the ‘interpretation’ ie sold conclusion infers something different and wrong - so you just put a note saying that was wrong and ‘this is correct’ - they had an independent arbiter after all , because the honest conclusion wasn’t wanted but when that was honest too it got rewritten so how many times can something be changed from truth and honesty so quickly then claimed it takes years to write a note saying ‘oh yeah actually it’s this’ at least where there is mis-selling on the abstract/front of the box that is causing harm.

 

At least by the November 2023 update - link. I don't remember seeing anything earlier

"As completing the review will take time, the joint Cochrane/IAG meeting discussed a proposal from a member of the IAG for adding a revised editorial note. Some uses of the Cochrane review do not reflect critical nuance and limitations in its conclusions, and the goal of a note would be to try to reduce such misinterpretation. There was unanimous agreement to this step, and the IAG has begun drafting a proposal for the editors’ consideration."​

 

Ok guven ut was suggested by the IAG member, and then the IAG unanimously agreed I imagine they drafted it swiftly and that has been sat with’the editors’ or if there is some other invented stage in Cochrane for all that time - 10months.

it’s important to name someone for accountability and responsibility starting to be held by individuals so i will make it as ‘the editors’ and I’m sure if they signed it off snd passed it in swiftly to someone else they can tell us and show us the proof.

similarly if the IAG weren’t allowed to pass their completed statement to the editors directly and it is an individual (s) in the middle holding into it that has been creating that not happening/obstructing they can confirm that if it’s not them.

so even when spoon fed something they can do immediately and could have done by Dec it has been chosen not to? Ie they chose the delay /not to sign that off - and given all the independent arbiter and assessment of what the results mean that note had written itself in meaning before anyone wrote it and ‘tone’ isn’t 10months important

so whoever chose to delay it for that time leading to the harm we see happening horrendously to pwme in hospitals and the GET / ‘pacing up’ lying rebrand of it being sold by gladwell etc in the meantime and so on being fervously opportunitistically built on dishonest statements eg by people like coffi- the longer they can hold it off whilst they churn out a few more sales pitches and seal a few more contracts etc? It seems like.

 

Agreed. And given whatever ‘compromise’ they’ve insisted on doing instead have now been evidenced by time passed as being hollow delay tactics I think they simply add weight to what that underlying action required needs to be :
complete removal and withdrawal with all the various notes , old copies and so on cleaned out.

and informing of publications and organisations who have cited or based judgements on it . It is still being used in a circular way as the main evidence gif other reviews and so on

the conclusion was written on the wall it needed to be withdrawn by 2019 with huge issues before that.

the fact all the delaying promises failed since - that were never sufficient anyway always need to be circled back only to emphasise’more if those compromises’ being suggested instead of withdrawal are clearly just delaying tactics

and it’s time it came down