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Also worth drawing attention to the problems identified with this review, and the authors' failure to address them: https://sites.google.com/site/mecfsnotes/submissions-to-the-cochrane-review-of-exercise-therapy-for-chronic-fatigue-syndrome

Gundersen doesn't seem like someone overly concerned about getting the details right.

It says 2017 at the link.

If they want the whole group to be able to attend every meeting, having the meetings in one place is likely to be better than making people find new ways to get to different locations every couple of months. Some sort of involvement for those not able to attend via skype would be good though.

The ME Association's statement was a sensible approach, not focussing on outrage or offence, but instead suggesting ways of making a positive contribution. Thanks to whoever thought of responding in that way.

Topple in the Canary with an unusually subdued headline considering the drama of the debate!: 'A cross-party debate has offered a ray of hope for the ‘millions missing’ https://www.thecanary.co/discovery/2018/06/22/a-cross-party-debate-has-offered-a-ray-of-hope-for-the-millions-missing/

I thought the Gervais bit was pretty shitty, and reflective of a lot of prejudices that were still being promoted by those within the UK Establishment, but there you go. I think less of Gervais for it, but he's far from our main problem.

Personally I think that criticising comedians for being 'offensive' can easily back-fire. For people interested in the context though, Gervais' full 'fame' special is here, with the ME bit from 21:30-29:00: He moves on to talking about how you'd never have an African complaining of having ME...

I think that he changed it after being contacted by patients. There was a blog somewhere that included a reply Gervais had written to the blog author. tbh, his reply probably made him seem worse, although it was good he took the time to respond. [My memory of it was that he just really didn't...

I don't understand the 'can't respond' thing at all either. We've been pushing them to respond for years. This tweet has disappeared now. Anyone got a copy of it?

Welcome. PS, transcript here: https://hansard.parliament.uk/Commons/2018-06-21/debates/A49A6117-B23B-4E35-A83B-49FEF0D6074F/METreatmentAndResearch

Yeah, it's available here: https://parliamentlive.tv/event/index/3d63c39d-18f3-4cd7-8509-c91785dced98

Especially if it's another written source of misrepresentations we can pick apart!

Aside from the fact Phil Hammond works at Esther Crawley's CFS clinic.

Fun quote from Monaghan here: Also, does anyone have a copy of this briefing from Sharpe? If so I'd love a copy, via pm if it's not meant to be public yet.

But then we have this sort of 'pragmatism' from Wessely and co: "the belief that symptoms are due to a persistent viral infection of muscle may or may not be true but more importantly is clinically unhelpful." http://www.simonwessely.com/Downloads/Publications/CFS/85.pdf They do occasionally...

My impression, just from people's comments here, is that there's still a problem of deference to the UK medical Establishment, and an assumption that they can be trusted. Maybe it's time to start focussing more on the institutional problems which surround PACE? It wasn't just one bad study that...

Think I'll be too nervous to watch live, so will wait for the transcript. Really hope it's more of a hammering of PACE (and the failure to respond properly to critics) than an exercise in sympathetic but vague 'awareness raising'.

In this case it meant that QMUL was able to completely evade the real concerns about access to PACE data, and present Monaghan's concerns as unfounded. I think that getting the details right at this stage is still going to be very important. That was recordings of therapy sessions.

Yes, it was a misphrasing by Carol which meant that the reply failed to address the real concern. It shows how important it is to get the details of the language exactly right. I hope that anyone advising her is being careful with that.