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

Point taken.

 

It was mostly an update about reporting possible future things, nothing to report, so not even that. Nothing happened, so there was nothing to report, and what we were told is partial at best. 6 months later, still nothing. So that was really just for show. As far as we know, nothing is happening anyway. We can't trust that the information Bastian tells us is true, and no one else says anything. The only new thing was about some note and we can't even trust that this is happening, so that wasn't a real report.

As far as I'm concerned, until proven otherwise with actual things to report, this is dead in the water. And likely always was. The only way this changes is if it becomes overcome by events, if factors outside of us and Cochrane force the issue to move. Like a research breakthrough. The rest is just lies to pretend that they're following their own rules, while not bothering to even respect the spirit.

 

Not sure where best to post this, but in Australia the RACGP has recently 'updated' their ME/CFS (they use CFS/ME) guideline, changing only a few terms that all mean the same things, and continues to cite the Cochrane review as evidence for GET. They simply rename Graded Exercise Therapy as Incremental physical activity while keeping everything else the same.

It also cites the PACE trial, in fact directs patients to its manual, which is the main piece of evidence for the flawed Cochrane review. It appears that Cochrane co-founder Paul Glasziou was responsible for it. Glasziou has also signed and promoted the "anomalies" editorial written by PACE ideologues, although it's unclear what precise role he had in it. It's not as if it's hard to find MDs willing to write this crap.

https://www.s4me.info/threads/australia-racgp-get-for-cfs.24076/#post-528087

 

I would be more sanguine and concise:
Hard to see how there is going to be any real Cochrane soon.
That might leave the review in place but it might lose a bit of gloss coming from a defunct source.

 

At this point, I don't know who could do that work, but I would find it worth highlighting that probably over 80% of the major associations, charities and organizations dedicated to ME/CFS support this, and support a biomedical-only approach. And that's probably an undercount. Depending on geography, of course. There are organizations we don't know of, but of the ones who are known on the Internet, almost all of them signed it, and almost all of them agree that the psychosomatic/psychological model is wrong, invalid and harmful.

It would blow the whole "small minority" lie to bits. Not that it ever had any legs, or that anyone saying so cares that it was never true. But given the prominence of Long Covid, how it made ME/CFS more prominent, I think this would be the next best major point to emphasize, especially as LC organizations mostly agree with it. Opposition to CBT & GET is overwhelming, found in support for this petition, in studies, in surveys, in news media, everywhere. It is simply a lie, one where I think we have reached critical mass to be on the offensive with, rather than defend each utterance of the lie.

 

Hilda Bastion has resumed her blog on vaccines. Any response to the questions on Cochrane?


https://hildabastian.wordpress.com/2024/05/07/when-will-we-get-a-sterilizing-covid-vaccine/

 

I thought not.

Just to clarify. There has been a question today on the vaccine blog to which Hilda has already responded.

 

My guess is Hilda is "following orders" not to engage. But in an entirely "independent" way ;-)

 

Hilda Bastion lasted posted on her blog relating to the new Cochrane exercise review process on the 18th of March:

Both @Trish and myself have comments that have been waiting in moderation since March, as presumably have other people as no new comments at all have appeared since. With a project update due in January 2024 and in March Hilda saying progressing ‘this project … will soon be a high priority for [her]’ I guess this independence has extended such that all communication has been stopped. After all we were promised an innovative new approach to consultation.

 

It now seems to me that Cochrane (and Hilda now too) are totally unable to be transparent or honest about anything to do with ME.

By “unable”, I mean that they are now so backed into a corner, that there is no plausible excuse they can make for what has happened and is continuing to happen about the problem exercise review.

Their only approach left is a head-in-the-sand approach, with an occasional toothless promise that things will improve.

Add to that a few jibes about how we (the patients) need to be patient, and trust their systems to self-correct. Yet at the same time they want us to give out, so they can blame the “vexatious” patients as their review delaying tactics continue.

I suspect they want this to become old news, so they can say we are “always complaining”.

Then they can sit back and continue to do nothing.

The stalemate is to their advantage. But I also think it is becoming more difficult for them.

(Sorry no new ideas here - I’m just having a vent. )

 

it comes down to lack of accountability.

 

What is the position of the IAG?