United Kingdom: Action for ME's PRIME project - research infrastructure
V.R.T.
Senior Member (Voting Rights)
Iirc Chris also said they would meet once a week? It sounds like exactly what ME research in this country needs. Some unity and direction. I'm particularly excited by the possibility of new specialists in DecodeME gene areas getting involved.
Sasha
Senior Member (Voting Rights)
Yes, he did, which surprised me and also made me very happy - it would be real hands-on, lets-get-on-with-it stuff.
V.R.T.
Senior Member (Voting Rights)
I also appreciated the way he framed it as 'we need to accelerate ME research towards effective treatments and diagnostics'. I think so much emphasis is often put by researchers on biomarkers and tests that you question whether they understand what the real priority is. Whereas when they emphasise the treatment part of it as Chris did makes me think they really get it.
Kitty
Senior Member (Voting Rights)
The grant includes provision for the involvement of Action for ME staff. This kind of thing would fall into their skill area.
hotblack
Senior Member (Voting Rights)
Great interview. Thanks to Chris and David. Really good to hear more about the project. Clearly a lot of work going on from a lot of people behind the scenes but the collaboration between AfME and Chris seems to continue to be really productive.
We’re lucky to have people like this working on our behalf now. (Not the best phrasing I know, as we’re not lucky in many ways and we deserve so much better than we’ve had, however I hope people understand the sentiment)
We’re lucky to have people like this working on our behalf now. (Not the best phrasing I know, as we’re not lucky in many ways and we deserve so much better than we’ve had, however I hope people understand the sentiment)
Andy
Senior Member (Voting rights)
No, no plans, as that would be mostly for the charities to organise. In particular, it would not be appropriate for PRIME to be using their funding for lobbying.
Utsikt
Senior Member (Voting Rights)
Is lobbying in your own time also inappropriate? Can any researcher ever speak publicly on behalf of the consortia on any matters not directly related to the research they are doing?
Would applying for more grants on «company time» be allowed?
I’m just trying to understand the limitations here.
Kitty
Senior Member (Voting Rights)
I'd imagine not? Grants are usually for specific projects, and time spent raising money for other projects usually has to be covered by central or revenue funding.
Andy
Senior Member (Voting rights)
Most of the time, no.
Well, that would come down to all individuals involved but, in my experience, typically a researcher would only speak as an individual when a topic is not directly related to the research of a consortia that they were a member of.
Only if grant application was a specific activity that they were funded for.
Kitty
Senior Member (Voting Rights)
Me too, but I suspect in the media sphere at least they'll hold fire until they have something to announce. It doesn't have to be study results, but it does need to give reporters a bit of something to chew on.
One thing the partnership might make easier is AfME's responses to press stories that are given prominence despite being misinformed or featuring grifters selling magic beans. If they write a letter challenging it, there's a ready made list of senior academics they could approach to ask if they'll sign it.
Andy
Senior Member (Voting rights)
Thread for latest PRIME workshop
Nightsong
Senior Member (Voting Rights)
PRIME Webinar 3 on PEM (Thursday 30th July, 2026 2-5pm GMT)
Link | PDF Link
The PDF includes details of all of the talks, including one on S4ME's PEM factsheet:
Talk 1: Post-Exertional Malaise - a perspective from the online ME/CFS community of Science for ME
Maree Candish – ME/CFS research advocate & Committee member of Science for ME
Abstract: Science for ME is an online community dedicated to improving the understanding of ME/CFS andrelated conditions. A recent initiative has been the collaborative development of a series of fact sheets on aspects of ME/CFS. Trish Davis led the writing of the second fact sheet which focuses on a core feature of ME/CFS, Post-Exertional Malaise (PEM), and includes input from people with a range of ME/CFS severities. This presentation will cover the content of the fact sheet, defining Post-Exertional Malaise, explaining what it is like to experience it, and noting some implications of PEM for ME/CFS research.
Talk 2: The pathophysiology of PEM, what we know, but importantly, what we don’t?
Mark Faghy – Professor of Clinical Exercise Physiology, University of Loughborough
Talk 3: Failure to capture PEM distorts evidence in ME/CFS and Long COVID trials.
Marjon Wormgoor – Independent researcher & ME/CFS research advocate
Abstract: I will focus on how PEM has often been insufficiently captured, overlooked, or misinterpreted intrials, and how this may lead to intervention benefits being overstated and harms underestimated. This is not a new observation for those working in the field, but it remains insufficiently addressed in study design and interpretation, with important implications for the validity of the evidence base
Talk 4: How to Eat an Elephant: Contemporary Scientific and Clinical Approaches to Post-Exertional Malaise
Todd Davenport – Professor and Chair of the Doctor of Physical Therapy (DPT) Program, Univ of the Pacific
Talk 5: Molecular signals of PEM
Maureen Hanson – Liberty Hyde Bailey Professor in the Department of Molecular Biology and Genetics at Cornell University and Director of the Centre for Enervating Neuroimmune Disease
Abstract: We have probed components of blood samples from ME patients and sedentary healthy individuals taken before and after two successive maximal cardiopulmonary exercise tests in order to search for clues tothe disabling phenomenon. I will describe the insights we have gained as a result of these studies.
Link | PDF Link
The PDF includes details of all of the talks, including one on S4ME's PEM factsheet:
Talk 1: Post-Exertional Malaise - a perspective from the online ME/CFS community of Science for ME
Maree Candish – ME/CFS research advocate & Committee member of Science for ME
Abstract: Science for ME is an online community dedicated to improving the understanding of ME/CFS andrelated conditions. A recent initiative has been the collaborative development of a series of fact sheets on aspects of ME/CFS. Trish Davis led the writing of the second fact sheet which focuses on a core feature of ME/CFS, Post-Exertional Malaise (PEM), and includes input from people with a range of ME/CFS severities. This presentation will cover the content of the fact sheet, defining Post-Exertional Malaise, explaining what it is like to experience it, and noting some implications of PEM for ME/CFS research.
Talk 2: The pathophysiology of PEM, what we know, but importantly, what we don’t?
Mark Faghy – Professor of Clinical Exercise Physiology, University of Loughborough
Talk 3: Failure to capture PEM distorts evidence in ME/CFS and Long COVID trials.
Marjon Wormgoor – Independent researcher & ME/CFS research advocate
Abstract: I will focus on how PEM has often been insufficiently captured, overlooked, or misinterpreted intrials, and how this may lead to intervention benefits being overstated and harms underestimated. This is not a new observation for those working in the field, but it remains insufficiently addressed in study design and interpretation, with important implications for the validity of the evidence base
Talk 4: How to Eat an Elephant: Contemporary Scientific and Clinical Approaches to Post-Exertional Malaise
Todd Davenport – Professor and Chair of the Doctor of Physical Therapy (DPT) Program, Univ of the Pacific
Talk 5: Molecular signals of PEM
Maureen Hanson – Liberty Hyde Bailey Professor in the Department of Molecular Biology and Genetics at Cornell University and Director of the Centre for Enervating Neuroimmune Disease
Abstract: We have probed components of blood samples from ME patients and sedentary healthy individuals taken before and after two successive maximal cardiopulmonary exercise tests in order to search for clues tothe disabling phenomenon. I will describe the insights we have gained as a result of these studies.
