NICE list of stakeholders for the ME/CFS Guidelines

For reference really. Not only are there a lot of psychs and BPS influences there, but some others seem like strange groups to be stakeholders.



Original list at https://www.nice.org.uk/guidance/cg...algic-encephalomyelitis-list-of-stakeholders4

ETA: Correct spelling.
ETA2: Changed thread title to reflect the fact that the list in the first post dates back to 2007.

 

I've been pretty rough recently, who shall I call first? The British Association of Drama Therapists or Homeopaths? Choices, choices

 

Didn't see Mrs Sowester's therapeutic products Ltd on the list ? What's going on?

 

That list looks out dated.

Hope 4 ME & Fibro NI is not on it. We are definitely stakeholders as we have been invited to send a rep to the stakeholder meeting in January, and we also submitted a response in July.

As for the unusual list, we also registered for some other guidelines... because we could... although to be honest many of them we will not respond to. So I imagine some other organisations may do that too, and have no real interest in ME.

 

Wonder who "Northern Ireland campaign for ME/CFS" is.... not an organisation I have heard of over here!

 

Sounds like that's you... congratulations on the new name!

 

LOL Esther! Certainly it is what we are doing!

 

I fear we have to register as stakeholders for each bit. ME Action Network has dropped off the list again too

 

After a bit of digging, this list is accessed from this page https://www.nice.org.uk/guidance/cg53/history, which indicates it dates back to 2007. So the question now is, can we find an up-to-date list?

Here is the page listing the guidelines as in development - https://www.nice.org.uk/guidance/indevelopment/gid-ng10091 but I see nothing off of this that points at a current stakeholder list, there wasn't a list offered during the process of application.

So Hope 4 ME & Fibro NI and MEAction may very well be, and probably are, on the list still, I just can't find a way of proving that at the moment.

 

@Jenny TipsforME Have MEAction had an invitation to the stakeholders meeting? That would surely give a clue as to whether you are properly on their list? There did seem to be a re-affirmation process a couple of months ago, as we confirmed we wanted to remain on the list (or something like that).

 

Not overly informative, but ...



https://www.loc-belfast.co.uk/c/Northern+Ireland+Campaign+for+M.E-CFS+8788

Edit: When I did the google search for this, @Keela Too's post came up as the 7th hit .

 

Thanks @Barry
I've now asked locally. The group is no longer active, but did some very good work before my time apparently.

 

I found this in my folder of things to look at when I can (big bloody folder). The only thing is I can't exactly remember where I got it. It says 2017 on it. Is this in an ok form for people to read?

 

Definitely a different list, and has both Hope 4 ME & Fibro Northern Ireland and MEAction Network listed, so obviously a more up to date version. Would be great if we can identify where it originally came from though.

 

Ok will try to work it out. I think I downloaded it around the time that the stakeholders comments was published. I'll see if I can narrow it down.

 

Well i can’t tell from my saved info so I put the title into google and it brought up a link to a NICE web page -

https://www.nice.org.uk/guidance/cg53/documents/stakeholder-list-3

It is a little different to the one I posted above - haven’t looked at the whole thing yet. Presumably they update it as people join and leave?

 

That one is another that the title says is from Oct this year, as yours does. Both Hope 4 ME & Fibro Northern Ireland and MEAction Network are listed again. I tried changing that number at the end of the URL you've given and I can't find any other version of the file, so maybe it's the most current.

 

Yes I presume so. I've had the first one - dated October 2017 - since 10th July 2017, which is a bit strange.

 

As a file or as a link?

 

I think I probably down loaded it from the website - ie same place at the link above.