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

9,476 signatures at time of posting.

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

 

According to Wikipedia, Cochrane has partnerships such as —

 

My joke that we would need to complain that Cochrane’s response to our complaint was in breach of their own complaints procedures was perhaps not as far fetched as I first thought.

It seems that Cochrane has decided that we are not a group that they intend to meaningfully respond to at all. This feels like a deliberate decision by senior management.

 

Someone suggested we apply pressure to those who are funding Cochrane. That might be a good idea. At the moment this review is the patients problem. One way to make it theirs would be to complain to the funding partners listed by Gatchaman.

A thought:
The local organisations could write to those listed explaining the problem and demand a retraction. Cochrane themselves have said the review isn’t up to date. The argument that it is still being cited might help here. Also they could let Cochrane know that those complaints have been made. Those who receive the complaints probably won’t do anything, but Cochrane seems to be under pressure anyways and what they really don’t need is more bad publicity. This might speed up the process.

 

Well, then, you cannot fulfil the role you have asked to provide. And somehow been assigned by actual public bodies. Simple as that. This is usually why government bureaucracies are so large, so that they can account for those issues, document them properly and so on. They receive and document all input from the general public and experts alike, and analyze all the things, not just what they expect will give them the results they want. Here they dispense with the general public and work strictly behind closed doors on the whims of experts who, more often than not, have giant biases and conflicts of interest.

The role of publishing clinical reviews isn't about doing the reviews themselves, it's mostly about being able to take responsibility and account for all the impact they have on the world. Otherwise you're just a front. And basically this is all they are. They basically admit that they cannot do any accountability. And boy are we seeing that.

Who the hell ever decided that this was a good idea? To give an empty storefront power and influence to do things they, by their own admission, cannot do? And yet, somehow, they are basically as wieldy and perform as well as the slowest government bureaucracy. The only benefit here is clearly lower costs, but you usually get your money's worth. If you cheapen out on clinical care, you will get the results of cheap clinical care. And wow is the bill on delayed maintenance due after decades of negligence.

 

If they had any idea what they were about there wouldn't have been any complaints.

 

Yet they had the time and resources to investigate the internal complaint WITH MULTIPLE committees.

Is it time to make the APPG for ME aware?

 

9,499 signatures at time of posting.

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

 

9,505 signatures at time of posting.

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

 

Social media posts for the new petition update

Facebook: https://www.facebook.com/sci4me/pos...j93DcnfgKiYSvM1EhG8n49CtMdfa8oBgKZ6d7meTnAqCl
Mastodon: https://med-mastodon.com/@s4me/111437291112280979

 

I hadn't read the updates from Cochrane before today. Shocking stuff. They spent over a year with multiple committees dealing with a bullshit complaint, merely a self-serving whine, to cancel the IAG, but for major complaints from thousands of "consumers" and nearly a hundred representative organizations about process and judgment errors, they just don't have the resources. Which is an admission of being unable to meet the roles they appointed themselves. Which their funders either don't know about, or don't care.

Absurd. So that makes the complaints process arbitrary and essentially performative. They also essentially admit to not care about reviews that are unfit for purpose and cause harm, on their own admission due to simply not being able to deal with it. And they have the shamelessness to boast about consumer advocacy, even as they treat us with complete disrespect.

And being a charity, there is no authority that deals with them. Apparently. So they have enormous power over millions of lives, and zero responsibility for the outcomes. Instead they protect their own and after having failed to follow their own requirements about reviews, they don't even follow their own processes laid out to deal with complaints, even major complaints about gross misjudgment and errors of process.

Evidence-based medicine. This is the organization best-known for it. What an absurd development this has been.

Absolute masterclass at laying out the arguments, @Trish. This is all so damning, and yet we are powerless despite being completely right.

 

I don’t think that we are powerless.

I think that Cochrane perceives no obligation to respond to us upon points raised. Cochrane don’t have a self interested reason to value our lives or our quality of life. They have in fact damaged our chances in this respect. But the consequences are for us alone to manage. That’s normal for a self interested organisation.

But in this specific case Cochrane also appears confident enough not to have to perform comms that would cover up this fact. They’re letting it all hang out. Perhaps they are confident that the establishment system, of which they are a part, has down graded our status as human beings, such that we don’t qualify for the protections that may be claimed in society. To the extent that we are rendered irrelevant.

I feel it. Refusing to follow their own complaints procedures displays such a breath taking degree of contempt, we perhaps find ourselves winded.

But overall I am gratified.
It’s one thing to be an unaccountable organisation with not insignificant power over the safety and health of the population abusing this power. But it’s another to not bother to conceal that this is how it is.

I guess Cochrane feel the walls closing in on them and decided to kick us into the gutter, in some kind of panic reaction or temper tantrum. It’s not a power move. It’s a strategic mistake.

We are in a much stronger position now that Cochrane has publicly given us written evidence of this intention to avoid their own procedures. Why so? Just because it’s us asking for their professionalism? We aren’t worth it? No? Or same goes for anyone? Well then Cochrane is done and dusted sooner than expected.


I guess Cochrane may resent or resist their obligation to have a policy at all. Or maybe they like having it but are not willing to comply with it. It is up to Cochrane to provide us access to their complaints channel as they have officially committed themselves to do. It is up to them whether we can in actuality use the complaints process and procedures for their publicly stated purposes. Nonetheless we will use this.