6&7 Nov: Cochrane wants patients' views in tweetchat to make 2018 conference relevant, accessible

How came we didn't think about Keith Gerarthy in the first place?

 

First tweet chat is: Monday 6th November at 14:00 GMT

I know I've had a couple of twitter accounts, but I keep forgetting the passwords for them so might try to borrow my partner's (assuming I my brain is in gear for this). I hate how short tweets are tbh. It makes it much harder to be critical without seeming rude and aggressive.

Maybe it would be good to link to this Coyne blog? https://jcoynester.wordpress.com/20...iew-of-exercise-for-chronic-fatigue-syndrome/

 

Giving this a bump

 

Thread is here

https://twitter.com/hashtag/cochraneforall?src=hash

https://twitter.com/user/status/927516433919209472

 

https://twitter.com/user/status/927537488436060161



Suggested this:

"Adopt a theme relating to the rigorous application of the "Scientific Method" in any research for it 2 qualify for consideration by Cochrane"

 

https://twitter.com/user/status/927542254746701824


My tweet:

"#Cochraneforall Big need for open public debate about how purity of Cochrane is being compromised by vested interests / lack of impartiality"

 

https://twitter.com/user/status/927544800978653184


My reply:

"Yes. @keithgeraghty from Manchester Uni would give a brilliant insight into how Cochrane has badly failed #mecfs patients."

 

I've never really understood the Cochrane review, even before I was ill and didn't follow science. It seems fairly obvious that if you gather up a load of accepted publications you are either collecting up a set of biases or a set of truths.

Just being the collector is not sufficient to declare which one you have done.

Example:

Its 1976 and Jimmy Saville is constantly in the newspapers covering what a decent and upstanding charity fundraiser he is.

Get all the cut outs, put them on a table.

Job done, that's the truth.

 

https://twitter.com/user/status/927557878386511878

 

Thanks Paul and others. Looks like only a few people were able/remembered to take part, but still that concerns about their ME work dominated the discussion.

For the rest of us, we've got another session tomorrow: Tuesday 7th November at 20:00 GMT.

 

Hi @Paul Watton
Thanks for posting your tweets here. So far I.e only learnt to retweet and will happily do that tomorrow if you post here. I shd get email alerts.
Apologies for useless techness!

 

I just clicked on the #cochraneforall hashtag and saw some very good tweets by PWME who were doing us proud.

Thank you!

 

Anton Mayer tweeted the James Coyne Cochrane piece & got a friendly reply.

https://twitter.com/user/status/927543366677598208

 

I have no idea if this is appropriate here, or not, but one thing that puzzles me with these sort of treatment assessments is why they don;t use standard measures. For instance, why are treatments that get, say, less than a 30% approval rating from their recipients still funded, let alone pushed. Any treatment that the vast majority of recipients consider ineffective, or harmful, should at least be looked at from that perspective, not just on the basis of papers.

We are, after all, who they are supposed to be doing this for - the medics, the NHS, the shrinks - if we say it's garbage, why aren't we listened to?

 

That looks hopeful that there might be some willingness to investigate. We really need to get people to start digging into this themselves. Hopefully Anton Mayer will be able to do a worthwhile follow-up.

 

David Tuller said he had a Cochrane piece in the pipeline...

 

The main results from Cochrane 2017 state that 5 of the 8 RCT studies they used for the review, used the Oxford Criteria to diagnose CFS.( Their term for ME not mine). This is on P2 of their report.

The results from the US IOM report, Feb 2015, stated that the Oxford criteria should be retired.

The online BMJ Best Practice report for "Chronic Fatigue Syndrome" states on P4 under "Definition", "Exercise and cognitive behavioural therapy studies that used the Oxford criteria for study inclusion are biased and misleading because people with true CFs are underrepresented,"

There are other useful quotes from this document,

 

The pages of the Cochrane report which have the comments from Tom Kindlon and Robert Courtney and poss others are 113-133. NB These are the report P nos, I think I started printing at 117.
There will be salient points in these as well.

 

Do also note that if you are unable to tweet tonight 8pm, that Cochrane would still like your views via a survey: https://www.surveymonkey.co.uk/r/9S...l&utm_source=facebook.com&utm_campaign=buffer

Do not be put off by the Oct closing date. It is still open.

 

New thread for that, @MEMarge?