NICE list of stakeholders for the ME/CFS Guidelines

No, so I’ve submitted the form again and had an email confirmation now

 

I know this is a little 'late in the day' but I have been going thro the list of stakeholders.
This one:
Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy):
diagnosis and management (Oct 2017) Stakeholders
https://www.nice.org.uk/guidance/cg53/documents/stakeholder-list-3

I don't know exactly what the rules are but have jotted down a few queries:
Some of them are private concerns and more commercially interested eg:
GreenVits
Heart and Mindfulness
Human Givens Foundation
Kindcare
Newday Counselling

Some I don't know why they are there:

Niger Delta University (?)
One Click Group (do they still exist (?)
PERIGON Healthcare (dissolved)
PPG Group (can't find them)
PRIME Project (can't find them)
SEENA (can't find them)
WOODLANDS RISE Consultancy (dissolved)

 

They now have a list of stakeholders updated as of February 6 2018: https://www.nice.org.uk/guidance/gid-ng10091/documents/stakeholder-list

S4ME is on there

 

Excellent!

 

Why on earth is "Body Beautiful" a stakeholder? They seem to be a series of beauty salons around the country. The so called "Body Beautiful Clinic" is similar, though it says it's a "beauty therapy centre". What does that have to do with ME and being a stakeholder on the Nice Guidelines?

GP update/Red Whale sounds reasonable. Until you look at the courses it offers. Medically Unexplained Symptoms course.

Some of the others seem a bit odd too. S.E.E.N.A? seems to be an occupational legal practice in Namibia.

And if we have Hindu Council UK, why not Church of England and Jewish Councils etc?

Sorry, not checked out all the psychotherapy stuff - take too long!

 

People on the make and their dog are on it...
I don't think we should be surprised; shocked maybe, but not surprised.

 

No doubt part of the think-your-physical-illness-better brigade.

 

odd entry....
"
DO NOT USE - NHS Direct
DO NOT USE
DO NOT USE Health Protection Agency"

are they trying to tell us something?

 

I suspect they may be the equivalent of "This entry is deleted", but not sure.

 

Or place markers to keep free for NHD & HPA? And A.N. other. Who knows!

 

There's nearly 200 stakeholders listed, but only 37 showed up to the first stakeholder meeting. So I'd be willing to bet most of them won't be involved at all.

 

Lets hope the beauty salons don't turn up!

 

In a way I'm hoping they do, I think I could use some advice

 

Its an intriguing thought that if they did, do everyone's views get the same weightings? Are there any sanity checks?

 

Regarding stakeholder input into the scope:

They don't explicitly say that unrelated groups have less of a say, but that might end up being the case typically. They do reserve the right to pick and choose who attends if necessary.

 

I think this is because the names of these organizations have changed in England - NHS Direct is now NHS 111, the Health Protection Agency is now Public Health England. NHS 111 don't seem interested in ME sufferers anymore :-(.

 

A couple of stakeholder reps who attended in Jan have been told that they cannot come to the scoping meeting in May because they are regional eg Barbara @Suffolkres and someone from the North London Group. Also when someone from the Crowborough group tried to register recently they were told they could not as they were regional, not national.
But you have regional mental health Trusts etc registered!!!
One rule for some, another rule for patients/carers etc....

 

Does anyone have time to contact regional facebook groups or local groups that meet, to link them together to form National networks that can register as stakeholders for more ME Community input to scoping workshop, and comments at certain stages of Guideline Development?

 

As that also excludes Colin Barton's Sussex and Kent ME Society, that's not all bad news. There are also a lot of good regional groups though.

That is assuming that this will be applied to all regional groups.

 

That's not acceptable - they have no excuse to exclude patients due to being regional, while allowing regional psychobabblers to attend.