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

Does the latest reponse by White etc in the Guardian: A dualistic view of illness doesn’t help those with ME/CFS | ME / Chronic fatigue syndrome | The Guardian
TW: this is particularly cynical, dishonest to the point of it being a new level of twisted callousness I didn't even expect from them


finally give us the 'smoking gun' regarding the refusal to withdraw the Larun review even though it is unfit enough it shouldn't be there, and to have not even put a proper warning on it etc - well all THAT directly and indirectly being used explicitly as excuses to do harm/continue and justify harmful treatments and indeed harmful regimes under which pwme are facing attitudes in healthcare?

I don't think I have seen anything make it so explicitly clear that the difference between 'it being clear these actions are required/the level of unfitness meets this action' and 'doing it' is specifically what is being used to justify the unjustifiable.

These people are directly using the fact Larun hasn't been 'withdrawn' to infer it is 'valid' and 'found the approaches to be beneficial', neither of which are of course true, by using non-sequitur. So they've proven this distinction will be deliberately used to misrepresent?

Particularly in the context of their entire 'article' (relating to Maeve's death being 'unfortunate', then pushing from what I can see the same CBT that Maeve's own words noted made her worse by using sophism to say 'it's OK because it's dualist not to force this onto people', even though what they do is anti-psychology anyway - I am gobsmacked at the immorality and lack of respect of such a person who would think of doing that)

 

Oh they will say it. They will all say it. All of them. And we will show the receipts about how they knew. And they will keep on saying it because clearly none of this actually matters, the systems protect themselves above all other considerations.

 

yep thinking of the PO inquiry there were a lot of 'I don't recall' claims to emails

It's a bit harder to claim that when they’ve written or signed a public letter in response to a newspaper article, so at least we know those individuals can't claim not to know about Maeve's case as written in that?

I'm wondering whether there is any use scanning those 48 names that apparently signed the anomolies article, as confirmation they must have therefore read the Nice guideline report etc

 

Yep.

 

Then again: "nuh uh".

It's their most powerful argument. It works every single time. Which means the problem is not with them, it's with the systems and institutions that stand by this. With trialists who perform studies with null or negative results but still recommend them. With organizations like Cochrane who publish reviews of those pseudoscientific treatments that don't pass their own principles but still recommend them.

 

The UK COVID inquiry pretty much went the same. On the topics of airborne transmission and the risk of Long Covid, basically everyone involved either have giant memory gaps, or in the conduct of their work never considered things they also don't quite remember well, that they admit weren't perfect but they will do it all over again the same way in the future.

No one lost their job or any credibility. Those systems are simply not subject to any real accountability. Nothing they can do will lead to changes in how they fail in secret behind closed doors. In large part because there are too many people and interests who want those narratives to be true and don't care that they aren't.

It's roughly the same dynamic behind why humanity almost always has awful leaders: the uncomfortable truth is that we have the leaders we deserve, because too many people agree with the awfulness, or don't care, or can't be bothered as long as it doesn't affect them.

 

I'm adding a link to the S4ME Open Letter thread regarding the 2019 Larun et al Review to the chronology I'm preparing, if that's OK?

The purpose is that it shows the ongoing live complaint regarding harm together with multiple warnings about concerns for patient safety for the last 5 years.

The question to be answered is, do Cochrane, given the nature of it's output, and the purpose to which they are aware they are utilised (hence their annotation attached to the 2019 Review), owe a duty of care to patients who are harmed? I mean we're not just talking about one complaint letter here!

Also I'd like to add a reference to Bob Courtney's letter of complaint dated 12 February 2018. Timing of that is significant as it was 5 months after NICE announced it's intent to conduct a review of the guideline. I can't find anything on the forum?

 

I thought that'd be the answer, but just wanted to check, thanks.

 

This is a fascinating point to ponder on when you think where does the power lie within this and who is pulling who’s strings in the pattern. You wonder whether cochrane exempting the cfs/me part was somewhat just naive and normal with intentions (the usual pragmatic politics etc not particularly good or bad) at the start

and then watch the battles and changes that happened and where the preceding ‘events’ were subject-wise to these big changes and I wonder if it’s that ‘evidence-based medicine’ or specifically cfs/me (as it was collected there , maybe a few other specific niches, at the start and now they are trying to expand a La Sharpe and the recent white etc guardian response into ‘every illness/no one doesn’t have a psychological component’ stuff) was where that new culture and tactics met head-on with the more standard set-ups.

or whether that’s entirely or just partly par for the course due to internal and external pressures in organisations of that type and who gets to be in charge types of swings and roundabouts.

 

That’s what makes me pause when people talk of an enquiry

It sort of needs to be at a point where things are understood that the huge amount of money spent on this ‘third way’ system have just been a massive drain only advantaging those creating their own kingdoms of happy to take up cushy but morally dubious jobs , but not the taxpayer. It might have been sold as cost-saving (which is why we need to stop saying that ourselves and be more precise in how we say things about this) but it wasn’t - it was more expensive than the alternative that worked or offered basic humanity for people to not get worse and created a massive load of extreme disability that even if they get away with weaponising lies to get people to ignore the suffering for means a huge blight regarding productivity that would have been there etc

if we’ve got it to that point beforehand so there is a writing on the wall prior to it of what significant change will be needed … well then the how it happened is important to shed light on the ‘process’ and who etc

and more people will turn on to it as they’ll realise they’ve been done over too, not some dirty favour for them (in their name)

 

It's been a massive disappointment so far, but I would strongly emphasize the RECOVER initiative on this. Even though it features a few useless trials for this stuff. In fact, mostly because of the complete imbalance it shows.

From the science side, the psychobehavioral woowoo is not even considered. All the hypotheses being worked on are grounded in biological science and concern the immune system, neurology, infectious diseases, viral persistence, immune dysfunction, mitochondrial dysfunction and so on. The money being wasted on trials of games and exercise has been widely criticized, but they amount to something like less than 5% of the total budget, if even that. This is what importance the psychosocial stuff has for the most important medical research institution in the world.

They love to point out eminence. The NIH is the highest eminence. NASEM has published a giant report on Long Covid as well, and it pretty much entirely ignores the psychosocial aspects. Not just the woowoo but any and all aspects. It is focused on science and medicine, not weirdo psychospiritual nonsense.

Going with both the NIH director and the director of the institute that has been reassigned the lead on RECOVER, NIAID, they just never talk about therapy, rehabilitation, psychosocial and lifestyle factors and so on. It's entirely irrelevant to the program. They are doing science, and this woowoo is of no relevance whatsoever.

And conversely, the psychosocial fanatics never pay attention to any of the biological research. They completely ignore the bio part of their construct, never go to conferences, never speak with other researchers and so on. They are completely separated, with zero overlap between them.

 

Now at 12,136 signatures.

Petition main page, https://www.change.org/p/cochrane-withdraw-the-harmful-2019-exercise-therapy-for-cfs-review

 

Following release of the ME/CFS NICE Guideline 206 in 2021, this blatant admission from the authors surely then rendered their whole review unsafe at that point, and should have immediately flagged up to Cochrane the review could no longer stand. The guideline provides adequate evidence for the risk of harms from exercise therapy.

Worth noting the evidence threshold needed for risk of harms is lower than the evidence threshold required to prove something is not harmful; "uncertainty" is not in itself adequate grounds for dismissing risks of harms, and cannot be used as an escape clause! e.g. Aircraft types get grounded on a lower evidence threshold of risks to passenger safety, than the evidence threshold needed to allow them to fly again; anything else would be nonsensical.

In effect the authors conceded (written into the review itself) their review would become untenable once adequate evidence of harms due to exercise therapy were officially acknowledged and published, such as the NICE guideline.

 

Couldn't remember if I'd already signed, so did it again anyway. No sign of a confirmation email, which I'm guessing means I already did it.

Correction: Did get an email so must be the first time.