NICE ME/CFS Guideline stakeholder scoping workshop, Fri 25th May 2018

I was at the table last time (in January) with the "thought field therapy foundation" representative. Apart from her original introduction I don't thinks she said another word.

 

Their transport costs would have been covered. I gather that they are a "two man band" type husband and wife team. Maybe networking or to spread news about their work?

At least they weren't pushy

 

Link to ME Research UK feedback in a Facebook post.

 

I can't open this ( I can get to the MERUK page). Perhaps I am not Facebooky enough. Was it particularly interesting?

 

I think the link @Andy posted was a link from the facebook page to the MERUK page, rather than to facebook.

 

The important bit is

 

MEAction report of the meeting, https://www.meaction.net/2018/05/30...e-heard-the-nice-guidelines-scoping-workshop/

 

Thanks for posting that @Andy that's good to know she made the useful suggestion of a Warning Notice now.

(@Invisible Woman I followed Andy's link to the MERUK page and then to the download of Sue waddles report, but for some reason although it would download, it wouldn't open for me on my tablet. Don't know why, frankly don't care much. Sorry I wasnt very clear previously, it's early here and the fog is dense with this one)

 

But very useful if you can measure it in different " modes" - was this not one of the many issues in PACE?

 

I think we should seen the draft notes recorded by the 6 table note takers (Royal College lady in my case) BEFORE it is submitted for consideration by Chair and NICE to redraft guideline ahead of the consultation. Just in case anything was incorrectly recorded or misconstrued...

 

That's because it "downloads" as a docx file- that's .docx for you- lack of compatibility in my experience.

 

Yeah, .docx is a pain in the proverbial. Everyone should set their save options to .doc automatically. It makes files so much easier to open.

 

Better still, of course, is PDF. It's supposed to be portable, by definition.

 

It's a real pity that we couldn't have had a better summing up at the end to see if they included the salient points. Wasn't enough time to do justice to all the different topics raised though.

The draft Scope didn't bare any resemblance to the issues raised by my group in the first meeting. It does appear as if these stakeholder exercises are ignoring the patient and carer input or very selective hearing.

At my table there was push to explain the "wide umbrella" part of the Scope as coming from the 1st workshop as a consensus so there may either be willful blindness to the lack of agreement on this. The person claiming this also forgot that I was at their table during the first meeting....

 

Maybe it was through ForwardME or the APPG?

There has been talk around a card similar to the one to report drug side effects to be used for GET harms.

I heard this mooted at the APPG but a long time ago now.