MECFS Patient Researcher Accolade Portfolio

InfiniteRubix

InfiniteRubix

Senior Member (Voting Rights)
Hi all,

Just flagging the "MECFS Patient Researcher Accolade Portfolio" @mecfspatientresearchers on Facebook at https://www.facebook.com/mecfspatientresearchers/

You will recognise a number of research heroes. There are other profiles in the works, once gotten round to (energy permitting), including:
  • @Natalie and Josh of Voices and Dialogues
  • Suzy Chapman
  • Mary Dimmock
  • Sue Waddle of MERUK
  • Nicola from @PhysiosforME
Once these are added, I don't imagine that there will be frequent updates. Please make profile suggestions and amendment suggestions where appropriate, taking account of the below (it's not a rollcall of advocates per se, but of 1) patient/carer researchers or 2) patients/carers that propagate or advance research in a professional field or generally). Input always appreciated.

Announcement for those who don't have FB:
Announcement and Online Training: We recognise contributions to scientific progress, probity and discipline by researchers of note who live with ME/CFS themselves or directly care for someone who does. This recognition is both for media purposes and posterity. These individuals have exhibited clear intellectual merit and their contributions have either been published, directly contribute to analogous scientific process or propagate evidence based understanding with fresh authority in their professional field. These individuals have produced material that is cited and/or has influence on the global scientific stage and/or the bodies of knowledge in their own respective fields.

If it were not for illness generated life-limitations, these patient-researchers and carer-researchers would already carry the same doctoral, professorial or other titles held by their peers in full-time scientific, medical, academic and related professions, including law and science journalism. Or their achievements would be greater yet. We acclaim the contributions of these individuals, in particular for their successes in disciplining peers who have detached themselves from scientific standards to a degree that would be unacceptable in surgical or pharmaceutical fora.

The page's primary intention is to give credit 1) in lieu of and in advance of consideration for honorary doctorates or 2) for disproportionately impactful distribution of scientific developments and analysis of their practical consequences. We also note that even salaried researchers can beyond the requirements of their employers or their health to ensuring their contributions to the ME/CFS body of knowledge, often in addition to other commitments.

This page is a roll of honour, a wall of virtual commemorative plaques. This is a "living page" and evidenced suggestions or amendments will be appreciated, although we do not expect there to be regular additions. It is not a community or news page. Each individual has an associated post that lists their Research Gate profiles, blogs, social media profiles and more as appropriate. .

We note, with great sadness, that recognition for some of these individuals is posthumous.

Reply by Professor Jonathan Edwards to Professor Michael Sharpe






(from Voices from the Shadows)

- https://www.dialogues-mecfs.co.uk/films/introduction/

- https://www.dialogues-mecfs.co.uk/…/post-exertional-malaise/

- https://www.dialogues-mecfs.co.uk/…/graded-exercise-therapy/

- https://www.dialogues-mecfs.co.uk/films/severeme/


- https://www.studyprn.com/p/chronic-fatigue-syndrome



/

(from Voices from the Shadows)

- https://www.dialogues-mecfs.co.uk/films/introduction/

, (The Morten Group - Oxford)

- https://www.mortengroup.org.uk/me-cfs/science-of-me-cfs/

(ME Association)

- https://www.meassociation.org.uk/about-what-is-mecfs/

(The #MEAction Network)

- https://www.meaction.net/about/what-is-me/
Click to expand...


from

 
Last edited:
Snow Leopard said:
Just a note, I'm not on Facebook and would prefer that no profile is written about me for personal reasons.
Click to expand...

Understood, although I don't know if you are already mentioned (please do DM me if there is a profile to remove)

Trish said:
@InfiniteRubix I assume you have sought and gained permission from the individuals listed to be included. Some patient/carer researchers may not wish to be identified as such.
Click to expand...

Totally understand anyone who wishes to be deleted, which I can intricately relate to.

We included people who are already discussed or articles written about them in the public domain, so definitely no doxxing of private identities or anything of that sort. Most, if not all, already have their own sites, Research Gate profiles, etc. People had also already been contacted to let them know, as a courtesy, opportunity to amend and also because it's positive thing that people have appreciated. Some may also wish to identify a charity for donation on their profile.

(Edited for clarity)
 
InfiniteRubix said:
Just an FYI that the ever slowly depleting todo list will be added to and a placeholder is now added:

Click to expand...


Holding Statement: The following patient researchers and carer researchers will be recognised for their work and invaluable contributions:

Natalie and Josh of Voices and Dialogues
Suzy Chapman
Mary Dimmock
Sue Waddle of MERUK
Nicola from PhysiosforME

Their portfolio entries will be completed in the coming months.
Click to expand...
 
You must log in or register to reply here.
Back
Top Bottom