2025: The 2019/24 Cochrane Larun review Exercise Therapy for CFS - including IAG, campaign, petition, comments and articles

YES!

ETA: Carol Monaghan SNP read out in the Westminster Hall debate in 2018, an extract of a letter she received from someone who participated in the PACE trial.

 

I don't think so. All a Cochrane review does is assess the quality of information in the public domain. when I did a Cochrane review patient consent was not an issue.

 

Am I correct in thinking that the 2019 now 2024 review without the suggested editors note from the IAG only includes research on mild/moderate cases of CFS/ME?

If so, then this republished review as it stands will be used to support activity management based on a deconditioning/behavioural model of activity management not only for mild/moderate, but also for severely affected patients. Publishing this review with the new date without a note stating that it is wildly out of date breaches its own stated aim to provide gold standard evidence to enable informed treatment decisions.

From Hilda's blog dated 24 January 2025

 

Indeed, and is the change to them trying to claim it is OK to insist noone can write to an individual person (although a pertinent question is whether this includes the bps advocates engaging in back-channel/informal communications as per the FOIs for the Nice process?) and all replies will not be for an individual person actually something that should be legally permitted given the formal definition of foreseeability ?

Surely someone cannot remove the right to tell someone of the foreseeable consequences and log this?

We've seen with the post office and all sorts of other areas the hiding behind a corporate blob and pretending the comms didn't all get to the same individuals - this seems to be almost creating that situation being the apparently only one possible. But really can/should someone be allowed to actually stop someone being informed? Don't individuals actually still have personal responsibilities and accountaibilities just as a fundamental part of being a citizen and their job and role .. no matter what PR fibs they want to put out suggesting 'don't email me I won't read it' acts as legal cover that someone now hasn't been informed even when they were warned directly? That in itself is surely negligence to the role and responsibilities? I'm very confused by it.

I mean luckily this 'new development' is very new so actually doesn't work as cover for anything prior to end Dec 2024 anyway - but it does seem like trying things on?

 

Do take care Trish. I'm already crashing from the limited amount of cognitive stuff I've done today, and your letters are detailed and in depth.

 

I wouldn't assume. Non-sequitur is used a lot sometimes deliberately, sometimes inadvertently. Without asking the question these points could be unrelated to each other (ie the reconfigure nothing to do with the sentences before, just 'another thing', or related to the sentence after) or the links between them need to be absolutely clarified as it could go many different ways.

There is a chance even Hilda would not know which is 'the driver/cause'

 

I think that at some point there is a piece of work to be done on the levels of coercion that are particularly present and directed at pwme in these subjectively-measured experiments. Including gaslighting having been created from so many different angles, and eg reporting back to employers pressures, being seen to not be 'non-compliant' and so on.

Some people would have been left with an actual choice of 'say you are progressing or lose even more of everything today', ie the consequences or perceived threats weren't hidden under which people were giving their answers. There were obvious 'safe/right answers' put into newsletters.

I say pwme because it is a context, so it can be plotted, not because I don't think that this hasn't at least in some ways been multiplied to other conditions too. However 10+ years ago around the time of these trials in particular the punitive, terrifying and evangelical context towards cfs was pretty extreme and isolated them from social support (which is proper psychology then was well-known and written about as the most important determinant of mental health not being significantly harmed and risked - so I find it fascinating how targeted that was by people who were in that specific area to deliberately create isolation and compulsion by threat of alienation if you do not pretend not to be ill etc)

The method is bad enough. That it was combined with these features makes it a different level of issue. It was no longer just a study on measuring 'treatment' but 'nudge' to a level that you are probably looking at other situational-pressure terms.

 

This is interesting, was their any particular sticking point? Or was it the fact that he was unwilling to throw out/re-think much of the findings associated with psychological therapies in particular?

 

Well, good for Hilda. I rather expected her to simply turn away, as so many others have done over the years. Given Cochrane's leadership is obviously going to ignore or stonewall any internal complaints I wonder if the IAG would now consider making a complaint to Wiley about both the publication ethics aspects of all this, & in particular the "update" that has allowed Larun to be cited spuriously as a 2024 review?

Interestingly, Leng has a piece in in the BMJ (about her being a chair of a new review into PAs) which has her affiliations listed as a trustee of Cochrane, & also contains this paragraph:

Thanks to the committee for all their work on the petition updates.

 

If I was not preoccupied this week I might think about a very brief letter to the BMJ basically saying that it is essential that the international medical community has taken note of Hilda Bastian's recent statements and their implications for Cochrane's credibility.

I might get around to it, especially if one or two others wanted to join in.

 

Thank you to all who put the work in to submit the further complaint to Cochrane about their appearant failure to address our previous complaints and their complete failure to keep us informed about what is happening,

 

I hope you will, because Cochrane are doing an outstanding job of not listening to patients.