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

Sasha

Sasha

Senior Member (Voting Rights)
This looks like a good opportunity to get a voice in relation to Cochrane reviews, which affect us all (especially BPS-proponent-produced reviews of the efficacy of GET & CBT).

There'll be a one-hour live tweetchat session on each day.

http://www.evidentlycochrane.net/cochraneforall-tweetchat/

In this discussion, we would like to hear your thoughts on the following:

  • What would make the conference appealing?
  • Think about things you’d like to do, hear or discuss at the conference
  • What would make it easy for you/others to attend and participate?
  • This might include practical considerations, access issues, cost etc
  • What are the different ways people could work together at the conference?
  • Have you any suggestions for speakers who bring a patient/carer perspective?
  • What are your main hopes and worries for this event?
(BTW, I'm not putting that in quotes so that people don't have to click to expand and read it.)

How can we take advantage of this?

@Esther12, @Dolphin, @Woolie, @Jonathan Edwards, @Simon M... who else to tag?
 
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There are ME/CFS twitterers out there. I know a few who have stopped using it recently, but at other times see ME patients presented as a marauding mass on there.
 
FYI, I'm on twitter - @ahimsa_pdx

I'm happy to like tweets, retweet things, join thunderclaps, use a certain hashtag, and stuff like that. For example, I did a few posts using the #TimeForUnrest hashtag and holding up a sign. Here's my Halloween-themed one:



But I'm not good at any live-tweeting, scientific debate, and those type of things (brain fog). Also, I know nothing about this Cochrane conference, and I'm not in the UK, so I wonder whether I'd be of any use in this situation?

At any rate, bearing those limitations in mind I would be happy to help in whatever way I can!
 
NexusOwl said:
Count on my tweeting. But is there an strategy we could follow? I'll pass this thread to other ME twitter users.
Click to expand...

Maybe it would be good to ask them to explain why it was that patient concerns (specifically the published responses from Courtney and Kindlon) were allowed to be dismissed without proper explanation in their review of exercise therapy? Having patients involved should mean that those at Cochrane are willing to engage in meaningful discussion and debate with patients, but so far we've seen anything but. This is particularly harmful when poor quality Cochrane reviews are then being used by other researchers to evade concerns about their own work.

The Cochrane exercise review authors just say that they want to "agree to disagree", even when (for example) they were caught wrongly claiming that "a positive effect of exercise therapy was observed both at end of treatment and at follow-up with respect to sleep (Analysis 1.12; Analysis 1.13), physical functioning (Analysis 1.5; Analysis 1.6) and self-perceived changes in overall health (Analysis 1.14; Analysis 1.15).” In fact the addition of exercise therapy failed to lead to a significant difference in self-reported physical functioning and changes in overall health (1.6 & 1.15).

(Kindlon's comment is on p117/141, followed by Courtney's) https://www.dropbox.com/s/koehut6iw2bm9v5/Larun_et_al-2017-The_Cochrane_Library.pdf?dl=0

There's probably a good way of communicating those concerns in the short sentence allowed by twitter... anyone got some good links to share?
 
Questions they're asking - maybe worth discussing that here now?:

What would make the conference appealing?
  • Think about things you’d like to do, hear or discuss at the conference
  • What would make it easy for you/others to attend and participate?
    • This might include practical considerations, access issues, cost etc
  • What are the different ways people could work together at the conference?
  • Have you any suggestions for speakers who bring a patient/carer perspective?
  • What are your main hopes and worries for this event?

Maybe it's a good idea to emphasise the need for real debate? To not just have them pretend that patients are all keen on, and supportive of, Cochrane's work?

Any speakers we'd recommend? David Tuller seems a good choice for someone who is well informed and engaged with patient concerns (no idea if he'd be willing to speak there). @Jonathan Edwards ?

Main worry: That they will go on trying to ignore the problems with their work, and care more about protecting their reputation than ensuring patients are not being misled about treatment's efficacy. Main hope: they'll retract the fatally flawed exercise review and then apologise for how they treated patient concerns?
 
It is the lack of responsiveness to patient concerns that is driving us nuts with Cochrane.
For a speaker who would be of interest to patients or carers, I suggest that one speaker who would be relevant to us, but fully mainstream, not ME, would be Dr Louise Wiles from South Australia.
Louise is heading the new Cochrane Review into consumer engagement strategies. She would surely be an acceptable mainstream speaker for Cochrane, while being someone who is both very knowledgeable and passionate about patient involvement at every stage of the research and review process.
If she were a speaker, Louise would be describing ways for the patient voice to be truly heard, not only by Cochrane but by all researchers.
(It is also possible that I might be able to encourage Louise to use PACE and the ME exercise Cochrane Review as an example of what not to do, but I couldn't promise that.)
 
  • What would make the conference appealing?
    For it to be a real debate on how cochrane is affecting people's life, specially chronic patients'.
  • Think about things you’d like to do, hear or discuss at the conference
    I'm specially concerned about the much criticised PACE trial scandal and the treatment of MECFS as a psychiatric condition while ignoring biomedical evidence
  • What would make it easy for you/others to attend and participate?
    Livestreaming with a live chat box, a form to submit questions to the speakers before and while they are conferencing so they can answer them afterwards and twitter hashtags and open discussion.
  • This might include practical considerations, access issues, cost etc
    All of the above of course should not have any paywalls.
  • What are the different ways people could work together at the conference?
    Without restrictions of criticism, please.
  • Have you any suggestions for speakers who bring a patient/carer perspective?
    Jen Brea has proven to be a good speaker with a nice Tedtalk with millions of views. Jane Colby is awesome too.
  • What are your main hopes and worries for this event?
    My main hope is cochrane will be honest about the role it plays in millions of people's life and take a human approach about it accepting criticism and engaging in good practices to assure the benefit of the people who do need the science and not the ones who profit from it.
    My main worry is this won't happen and the patient community will be silenced and neglected once more.

This is how I'd send it. Tho I would rather discuss with you the better patient speakers to sugest so a lot of us send the same request regarding this.

I also think sending a lot of similar answers (not copy pasta) would be a good start too. Specially mentioning ME and PACE, but not always focusing mainly on it.

What do you guys think?
 
NexusOwl said:
  • Think about things you’d like to do, hear or discuss at the conference
    I'm specially concerned about the much criticised PACE trial scandal and the treatment of MECFS as a psychiatric condition while ignoring biomedical evidence?
Click to expand...
I thought most of your points were really good, but there's a slight danger with this one of playing into the 'anti-psychiatry' meme. It's difficult, because I think that some of the problems with how Cochrane have treated ME/CFS patients does stem from the view that ME/CFS is a mental health disorder, and the prejudices that come with that, but without going into all the details complaining about that can make it seem like it is us who have prejudices against mental health problems. It seems like twitter can be terrible for nuance, so personally I'd probably try to avoid that area altogether.
 
Other possible speakers who might be good for providing a patient perspective on the issues Cochrane have been ignoring (but might also not be interested in giving such a talk, especially when outside of the UK):

- Carolyn Wilshire co-authored the PACE recovery paper with patients.
- Leonard Jason.
- Rebecca Goldin or Trevor Butterworth from Sense About Statistics?

Most of the actual patients seem too ill to mention.
 
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