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

Very much not. As most of the public have never heard of Cochrane. I spent a lot of time before I caught on to the extent of their uselessness, trying to "sell" Cochrane to the public...I was surprised at the time that Cochrane big wigs were less than overjoyed by my efforts...and seemed NOT to want Cochrane to be a household name as I did at the time. Now I understand why

 

Thanks for the feedback. I will try to incorporate @Hutan and @Nightsong’s suggestions into the draft without making it too long.

I decided to add this as I’ve changed the question to make it a request for action, in line with the WPQ rules. As I’m now asking for a more general review of relations with Cochrane, I thought it was relevant to include other issues with Cochrane. But I will change the wording along the lines that Hutan suggests above. I will also see what my MP thinks.

 

I wonder if it would be possible for them to update their paper.

 

Yes - MAGENTA, maybe another survey or two with similarly negative results for GET (there was the Xiao/Davis one, wasn't there a second more recent one as well?), updates to the Cochrane handbook, ethical issues, and could perhaps incorporate some of the arguments from the Sepulveda critique of sample size in PACE as well.

 

https://virology.ws/2025/02/20/trial-by-error-a-letter-to-cochranes-editor-in-chief/

 

Hard to know. I don't think the letter will move them. It will just help add to the pressure over the issue.

 

Great list of signatories

At the very least it reinforces the point that this issue is not going away.

 

I hadn't thought of that. it's really a way to get attention for the issue rather than to really force a change, since it is likely they will just ignore it. I assume they would also ignore it if sent to "complaints" or any other department. Whether they take notice of it or not, the main goal is for others to take notice of it and recognize that this is not just about objections from "whiny" patients.

 

MEAction in their social media are still pressing for an editorial note and continuing to focus on the IAG as their main channel of communication.

 

yeah, my thoguht was that in a few weeks I'd resend and repost with more signatories and also organizations signed on. That's what I did with Lancet letter and the letter to NICE. The subsequent versions of those each had more than 100 individuals and almost as many groups, whether patient support, advociacy or scientific/medical entities (like OMF or Bateman Home Center) So definitely people can get in touch with me via my e-mail: davetuller@berkeley.edu

One question I'm not sure about is if scientists/investigators should be people with doctorates only? or should it be anyone involved in research? And nurses/nurse practitioners, or just physicians? In general I've limited it to people with so-called "terminal degrees" to prevent accusations or criticisms of "diluting" the list. But I'm not sure if that's completely warranted or if it makes sense to use a more expansive understanding of "expert."

 

Great letter!

One small point - in the signatories, you have Robert Naviaux as being in San Diego, California, UK. I'm pretty sure California is in the US

 

I decided to adopt the style of journals, which don't generally include degrees and job titles in authors' signings. I found that some people are ok with just their main degree, and others want every degree and licensing whatever. It's too complicated for me to keep track of and too easy to make mistakes, especially with lots of degrees from different countries that I've never heard of and then have to check against the person's profile. So in that sense, Karla won't know that everyone on the list has a doctorate or is a physician. But I'm not too concerned about that.

 

Oops! Bummer. Sharp eye! Hopefully only you will have noticed that. I'll fix in the next iteration.

actually, perhaps California will secede and join the UK, under the circumstances, in which case it would be correct.

ADDED: Actually, I fixed it in the post. I figured it's a typo rather than an error so doesn't require a formal correction.

 

Denmark is wanting to buy California.