UK: Priority Setting Partnership for ME/CFS

Is this limited to UK residents? I have tried asking those involved via various (online & email) means and have yet to receive any replies at all.

 

One thing AFME Sam said on Facebook was they were open to suggestions of clinicians to get involved. The problem is , with newton presumably not allowed as a researcher, who are the good CFS clinicians?

 

I would imagine so.

 

Not that I have any additional knowledge but I don't think it should be. As I understand it, patient input can come from anywhere. The Steering Group might be as the application pack does talk about face to face meetings.

 

Code:

https://twitter.com/actionforme/status/1271094025140011008

https://twitter.com/user/status/1271094025140011008

 

Following a forum vote that closed earlier today, @MEMarge has been confirmed as the official S4ME representative on the Priority Setting Partnership's Steering Group.

 

Ecellent! thankyou @MEMarge

 

Membership of the steering group is limited to UK residents over 18.

I will find out whether answering the survey is restricted to UK residents. I know they monitor the URLs to ensure that the same address is not being used to give "hundreds" of replies.

 

Article from the MEA on this, https://meassociation.org.uk/2020/0...tion-to-the-jla-priority-setting-partnership/

 

Clicking on the tweet leads to a message that says "this tweet is from an account that has been suspended"

 

OK, thanks, I've passed that on.

 

https://twitter.com/user/status/1282675881954222080

 

First PSP steering group meeting to take place today
https://www.actionforme.org.uk/news/first-psp-steering-group-meeting-to-take-place-today/

 

From the article

 

It is a great group: 4 clinicians who understand the reality of ME, 4 carers and 4 people with ME themselves. A few are members here.

We did have a great set of applicants, which has made it easier to recruit an excellent team.

The BPS/BACME promoters were notable by their lack of applications .....?

 

Perhaps they're confident that, whatever the research priorities are, they'll be the ones who get funding to pursue them?

 

Or perhaps they realise that there is easier prey elsewhere nowadays, so are looking elsewhere? After all, they didn't get £3.2m recently.

 

Could be, though moving them on to easier prey is a bit tragic for the easier prey. Given the questionable way patients can be given diagnoses like PPS, FND, etc, it could also turn out that we end up being the easier prey in the long-run too. Hopefully we might be able to raise standards in a way that gets rid of the predators.