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

ukxmrv said:
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
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if they post about it on social media or put on their website theyre on a a NICE meeting gives an element of credibility to what theyre doing #cynicismalert might as well have whats his face from LP there as a stakeholder
 
It sounds like there really should be some better way of filtering who has a genuine reason to be at such a meeting. That person was taking a seat at a meeting that could have gone to another rep. from a genuine organisation with knowledge and experience relevant to ME.
 
OverTheHills said:
I can't open this ( I can get to the MERUK page). Perhaps I am not Facebooky enough. Was it particularly interesting?
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The important bit is
There was some opposition to the Draft Scoping Document and a member of our group suggested that the Scoping document relating to Multiple Sclerosis be considered because it was well-written Another member of my group was concerned that other conditions relating to ME might not be covered by the Guideline and she explained how important it was for her that some conditions relating to ME should be included. I wanted to stress the importance and difficulty of the severely affected being considered as a priority. One way to ensure that the severely affected are included, might be to use a novel approach, such as receiving short video clips, or having short Skype meetings with people who are severely affected, or their carers. The group facilitator promised to feed back all the comments raised.
My overriding concern, one that I have raised numerous times with NICE over the last 2 years, is that CBT and GET are still being recommended by the existing ME/CFS Guideline that is not “fit for purpose” and as a consequence, it could make sufferers worse - and especially children and young people remain at risk of being taken from their parents or being subjected to treatment that can make them worse. I asked that a Warning Notice be issued as soon as possible because the current Guideline will not be replaced until 2020! The facilitator responded that she would submit feedback to the “appropriate person”.
There were too many issues raised to cover here and, also there were a lot of topics that were needed to be covered, but could not be, as we ran out of time. However, my overriding sense was of positivity and of a genuine desire to try to get the NICE Guideline for ME/CFS right next time.
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Andy said:
The important bit is
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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):asleep:o_O:thumbup:
 
Trish said:
The Chalder Fatigue Scale is just a list of 11 statements vaguely related to fatigue that you rate on a 2 or 4 point scale. I can't imagine anyone finding it long and arduous. Nonsensical idiotic and pointless I would agree with. I can't imagine why anyone would pay to use it. You just add up the score and get a meaningless number.
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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...
 
OverTheHills said:
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):asleep:o_O:thumbup:
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That's because it "downloads" as a docx file- that's .docx for you- lack of compatibility in my experience.
 
Suffolkres said:
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...
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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....
 
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NelliePledge said:
Sue Waddle mentions that she's been pressing NICE for a Warning Notice about GET is this a formal thing at NICE i tried searching for it but couldnt get anything useful - anyone got a link?
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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.
 
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