NICE list of stakeholders for the ME/CFS Guidelines

I think it will be applied to all regional ME groups FB or who meet up in person. One group who recently applied to join were told they could not because they were regional. It seems that N Ireland and Wales are the exceptions.

It is only reps from stakeholder groups who can attend the scoping meeting in May.

However, when it comes to applying to be a lay member of the Committee, you do not have to have any connection to a stakeholder group!

You need to be a patient or carer or someone with an interest. That is not a direct quote. When I first heard this I thought it could be virtually anyone, but when I looked at the NICE info a bit more it seems as though you need to be "connected" to someone with ME.

We do not know what their definition of ME is, to base this on. I am sure that robust diagnostic criteria will be included at the scoping meeting in May, but won't have been decided on before lay member applications begin in June (from 21st, from memory, for about a month).

So who knows how many "cured" youngsters, who "love our clinic", or their grateful parents will be encouraged to apply. Or some of the old boy generation who are in control of so much. Surely some of their set (including some women), who are not doctors, could be persuaded to contribute to a worthy cause/protection of their buddies' reputations and income streams. After all, the establishment needs to unite against these vexatious militants who are harassing them.

I think an ME Network group needs to be set up to register as a stakeholder group to attend the next scoping meeting.
This really just means linking up FB groups from around the country.Should not need any formal paperwork etc, other than a contact email and poss a contact address.

I don't have time to do that this week, @Binkie4 is there anyone in the Surrey group who could send out emails? I have contact details for the Central London group: mecentral@greenbee.net. Cath will have contact details for others. @Suffolkres was one of the people told she could not come back.

Other ME groups that seem pretty active are York, Bristol, Lochaber....Andover

 

I think it's too late to register as a stakeholder. This forum was doing so pretty close to a deadline for it, and that was months ago from what I recall.

 

Unfortunately this. S4ME got in with less than a day to spare.

As a suggestion to all interested but excluded parties, why not set up a thread on the forum so that we (S4ME) can see what aims each group had and wanted to achieve through their involvement as stakeholders. It might be that we'd be able to take those points forwards.

 

I thought that was just the deadline for the Jan meeting. As I understand it stakeholder groups can apply at any time. Would just need to be before deadline for application for next stakeholder meeting.

 

Now that you mention it, and that I've more properly woken up, I think you are right.

Looking at the guideline in development page, https://www.nice.org.uk/guidance/indevelopment/gid-ng10091, it has a "Register as a stakeholder" link right under the title, no point that being there if you can't apply.

And addressing the N Ireland and Wales being exceptions, could that be due to health powers being devolved to the different regions? If that doesn't apply to N Ireland, perhaps they view it as necessary as they aren't mainland England? I'm just guessing there.

 

Yes. Probably to do with our devolved government.

 

Stakeholder list, current as of 16th October 2018, https://www.nice.org.uk/guidance/gid-ng10091/documents/stakeholder-list