NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

See #726. Obviously not claiming credit but perhaps
they do read the letters and absorb the contents after all.

Mr B will be pleased. I thank him for all the letters he writes.


ETA: the announcement says “ meetings are beginning”. Have the final ?2 been appointed. @Keela Too @adambeyoncelowe

 

We've seen before that there is a time lag, somewhat understandably, for those documents being updated. To my knowledge there is no more up to date version than that one.

 

Do you have a link @Andy?


ETA: https://www.nice.org.uk/guidance/gid-ng10091/documents/committee-member-list-2

Just looked up the earlier thread but this now seems to contain a statement not a list of members

 

As I'm feeling lazy I'll quote myself

Follow the link and then look for the document called Committee Member List.

 

FYI the now 2 members of the NICE Guideline Committee and review for ME who were regarded by Waveney CCG as having a "conflict of interest” in the delivery of in their feasibility report for Suffolk and Norfolk ME and CFS Services, and who had offered to steer the ME Service ship into calm and safe waters…… After responding to a public NHS advertisement issued for a lead clinician to do so in 2015.....

 

Done that. There are 2 documents on Committee members but I can’t find a list of names attached to either. Am I missing something?

 

This is the direct link to the current version, https://www.nice.org.uk/guidance/gid-ng10091/documents/committee-member-list - it's a four page PDF document.

 

Thanks. Gulp!

 

Thanks Andy, do you know, is this the final list?

 

It includes three 'to be appointed' slots. Presumably they've been filled though, if meetings have started.

 

I think the posts filled so far will be published after the first session (which was today).

But they're still recruiting a paediatric nurse, so please tell people to apply.

 

I suggested Janey Readman, Team Leader, Children's Community Nursing for CFS/ME. I think she retired recently though.

CFS/ME and Young People - Milton Keynes University Hospital

https://www.mkhospital.nhs.uk › ... › For patients › Health Psychology
Our keynote speaker was Dr David Vickers, Medical Director and Consultant ... Janey Readman, Team Leader, Children's Community Nursing for CFS/ME.

 

I know no more than the rest of the forum but given it doesn't include Caroline then I can say that no, it's not the final list.

 

Retirees may still be fine. It would be good to fill this role.

 

I did try to make contact with her, as she would be excellent, but she was abroad and colleagues (or ex colleagues) said on her return they would pass on my message.
David Vickers Cambridge paediatrician (who was involved with the 2007 Guideline) may be in contact with her?

 

Hi everyone. I know there hasn't been any chat about who us mysterious lay members are in a while, but I thought I should respond to some of the things in this thread.

Firstly, I totally get why people were suspicious of lay members who they hadn't heard of before. In my case, I was only diagnosed a year ago and it took me a long time to accept and publicly admit that I was ill.

I can't really share my opinions at the moment, but I can say that I have been ill for 14 years (since I was 4). I have felt totally let down by the medical profession and I've had my fair share of gaslighting and neglect. The main reason I'm doing this is to try to make sure in the future, children with ME aren't treated the way I was.

Just because I'm young and you haven't heard of me before, it doesn't mean I'm stupid or uneducated. Obviously I'm not perfect and I don't know everything about everything, but I do know what being a child with ME felt like, and that's the voice I'm there to try and ensure is heard.

I hope this provides a little reassurance.

 

Saran, good to see you here.

As fellow lay member on the GDG, I am delighted to be working with you over the next months to ensure that patient perspectives are heard. I am confident that you will bring a strong voice for young people to the group. Xx