UK: Priority Setting Partnership for ME/CFS

[Snow Leopard]

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.

 

[Cinders66]

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?

 

[Cinders66]

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.

I would imagine so.

 

[Andy]

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.

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.

 

[Andy]

Recruitment is open again for #pwME and clinicians to join the M.E./CFS Priority Setting Partnership Steering Group and help shape the future priorities for #MECFS research. Find our more here: actionforme.org.uk/news/help-shap…

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

 

[Andy]

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.

 

[JemPD]

Ecellent! thankyou @MEMarge

 

[MEMarge]

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.

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.

 

[Andy]

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

 

[JellyBabyKid]

Looks like there is a Twitter account for this PSP already

https://twitter.com/PSPforMECFS/status/1237312237582376961

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

 

[Andy]

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.

 

[Andy]

 

[Andy]

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

 

[NelliePledge]

No published information on the steering group members yet.

 

[Andy]

No published information on the steering group members yet.

From the article

Details of the make-up of the Steering Group will be put on the PSP Website shortly. It is a fantastic group of patient/carer experts and clinicians.

 

[NelliePledge]

Yes I’ve checked the website nothing on there yet.

 

[MEMarge]

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 .....?

 

[Esther12]

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?

 

[Andy]

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.

 

[Esther12]

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.