UK Action for ME (AfME) launches PRIME ME/CFS Research Involvement Hub, May 2026
- Thread starter Nightsong
- Start date
Andy
Senior Member (Voting rights)
For more details, see PRIME ME/CFS Research Involvement Hub Information pack - PDF document
NelliePledge
Senior Member (Voting Rights)
That’s really helpful thanks
BrightCandle
Senior Member (Voting Rights)
I have mixed feelings. On the one hand one PPI I did I think we made a difference to the research substantially and really made it better, but the others it was a check box exercise for the researchers and the PPI impact was minimal. If afME vet the other side or bring some clout to improving PPI involvement for its representatives it could be a good way to find participants for research projects and ensure both sides use it well.
Feels like a good iniative, in general projects finding their PPI members and research subjects could be accelerated quite a bit by the charities.
Feels like a good iniative, in general projects finding their PPI members and research subjects could be accelerated quite a bit by the charities.
NelliePledge
Senior Member (Voting Rights)
Yes I had a poor experience a few years back that felt very tick box for ethics approval. Hopefully the researchers accessing the pool of people with ME/CFS will have some PPI education as a prerequisite?
Andy
Senior Member (Voting rights)
From the PRIME ME/CFS Research Involvement Hub Information pack.
"How will researchers use the Hub?
Researchers will be able to request involvement from members of the Hub.
All requests will be screened by at least on member of the Action for ME research team, at least one ME/CFS researcher from PRIME, and at least two lived experience representatives from PRIME, before invitations are sent out to member of the Hub.
When submitting a request, researchers must clearly outline what they need from Hub members and the most appropriate way to gather this insight (for example, a short survey to gather views, or inviting Hub members to act as co‑investigators on a study).
Every researcher request will be screened to check it is:
✔ grounded in a basic understanding of PPI
✔ safe and appropriate
✔ accessible for people with ME/CFS
✔ based on a reasonable scientific rational
✔ transparent about expectations
If a project does not fully meet our screening criteria but is still considered valuable, we will work with the research team to bring it up to standard.
Once approved, the opportunity will be shared with members of the Hub, along with a timeframe for expressing interest. If more people volunteer than a project requires, we will recommend suitable Hub members based on lived experience, demographics, location, and relevant interests. For longer term involvement opportunities, we may hold interviews."
"How will researchers use the Hub?
Researchers will be able to request involvement from members of the Hub.
All requests will be screened by at least on member of the Action for ME research team, at least one ME/CFS researcher from PRIME, and at least two lived experience representatives from PRIME, before invitations are sent out to member of the Hub.
When submitting a request, researchers must clearly outline what they need from Hub members and the most appropriate way to gather this insight (for example, a short survey to gather views, or inviting Hub members to act as co‑investigators on a study).
Every researcher request will be screened to check it is:
✔ grounded in a basic understanding of PPI
✔ safe and appropriate
✔ accessible for people with ME/CFS
✔ based on a reasonable scientific rational
✔ transparent about expectations
If a project does not fully meet our screening criteria but is still considered valuable, we will work with the research team to bring it up to standard.
Once approved, the opportunity will be shared with members of the Hub, along with a timeframe for expressing interest. If more people volunteer than a project requires, we will recommend suitable Hub members based on lived experience, demographics, location, and relevant interests. For longer term involvement opportunities, we may hold interviews."
NelliePledge
Senior Member (Voting Rights)
Great