NICE list of stakeholders for the ME/CFS Guidelines

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)
 
Valentijn said:
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 :)
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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? :wtf:

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

The Red Whale Medically Unexplained Symptoms Course
A significant proportion of patients who present to us will turn out to have symptoms that are medically inexplicable. We all know that there is no magic solution with these patients and sometimes they leave us feeling defeated and not sure what to do. However, there is evidence which can help address the issue. We work through a toolkit of techniques that have been shown to enhance the confidence and skill of doctors and clinicians.

The one day course provides you with 6 CPD credits to help you meet the requirements for appraisals and revalidation.

On the day, registration starts at 9.00am and the course runs from 9.30 to 5.00pm. The course fee includes refreshments throughout the day and a buffet lunch.
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:(

  • What’s included?
  • A printed copy of the Medically Unexplained Symptoms Handbook covering the subject more extensively than is possible in the course.
  • 12 months subscription to www.gpcpd.com. Home of the GP Update Handbook online. It allows you to capture CPD credits as you read on the site and use it in consultations! It also comes with focused learning activities to earn further CPD credits…at the end of the year you simply upload everything ready for your appraiser.
  • A buffet lunch and refreshments throughout the day.
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:arghh: :wtf: :eek:

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! :banghead:
 
Barry said:
Its an intriguing thought that if they did, do everyone's views get the same weightings? Are there any sanity checks?
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Regarding stakeholder input into the scope:
If there are large numbers of stakeholders, it may not be practical for all registered stakeholders to attend. NICE may specify groups or roles of stakeholders who are needed to attend. The aim of the workshop is to include as wide a range of views as possible.

People attending the workshop should bring as wide a perspective of relevant views as possible. Attendees, including representatives of relevant service user, carer and community organisations, should have specific knowledge of, or experience in, the topic area.
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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.
 
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?
 
MEMarge said:
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....
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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.
 
MEMarge said:
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....
Click to expand...
That's not acceptable - they have no excuse to exclude patients due to being regional, while allowing regional psychobabblers to attend.
 
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