NICE list of stakeholders for the ME/CFS Guidelines

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