United Kingdom: Action for ME's PRIME project - research infrastructure

V.R.T. said:
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.
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absolutely
 
Nightsong said:
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.
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A reminder that the PRIME workshop on post-exertional malaise (PEM) is this Thursday (30th July). Details in the quoted post above or register here.
 
If anyone would like to view the slides from the presentation @Hutan gave the powerpoint is available to download along with some audio files describing experiences of PEM at this dropbox link.

If you don’t have powerpoint you can preview the slides in the browser too, although they’re not shown exactly as they would be in powerpoint it’s good enough to read the content. Transcripts of the audio files are also available if you have a dropbox account, if anyone wants them and doesn’t, message me and I can share.

Thanks especially to @Hutan for bringing this presentation together, @Trish for all the work on the original factsheet and to everyone in the community who contributed their time and experiences.
 
hotblack said:
If anyone would like to view the slides from the presentation @Hutan gave the powerpoint is available to download along with some audio files describing experiences of PEM at this dropbox link.

If you don’t have powerpoint you can preview the slides in the browser too, although they’re not shown exactly as they would be in powerpoint it’s good enough to read the content. Transcripts of the audio files are also available if you have a dropbox account, if anyone wants them and doesn’t, message me and I can share.

Thanks especially to @Hutan for bringing this presentation together, @Trish for all the work on the original factsheet and to everyone in the community who contributed their time and experiences.
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Very good.

This final line here is a very important point. Something I'd wanted to flag for a while. PEM can be unpredictable. You can't automatically assume PEM will be induced by, e.g., an exercise test, even if it's over someone's usual capacity.

Screenshot 2026-07-31 at 18.25.25.webp
 
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Did anyone see the other talks after Hutan's? I sort of watched the next one by Mark Faghy without good concentration. He spoke very fast, and put me off in an early slide with the example of PEM as someone who went to have coffee with a friend and now needs to rest. He did say some sensible stuff about what ME/CFS is and the importance of involving pwME/LC in research but it seemed to me all very vague and generic.
 
Trish said:
Did anyone see the other talks after Hutan's? I sort of watched the next one by Mark Faghy without good concentration. He spoke very fast, and put me off in an early slide with the example of PEM as someone who went to have coffee with a friend and now needs to rest. He did say some sensible stuff about what ME/CFS is and the importance of involving pwME/LC in research but it seemed to me all very vague and generic.
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Yes, I listened through.

Faghy provided no data or information as such. He talked a lot about the problem being multisystem. He is clearly involved in rehabilitation and talked about impact of studies on rehab.

Marjon Wormgoor talked about the problem of PEM not being recognised. She rather laboured something we are very familiar with here but covered things comprehensively.

Todd Davenport again did not give any data and talked about PEM being multisystem.

Maureen Hanson provided interesting data from her study of proteomics following exercise. I have made some cmments on that in the thread on central mechanisms for fatigue (somewhere)*. She made suggestions about what her data might mean but I find it hard to see a story that wold take us forward. One odd thing was that changes were quitw different in men and women so they could not be showing a single general mechanism at work. I find it hard to believe that PEM has a different basis in men and women.

To be completely honest I thought Maree's presentation put all the others in the shade. They had little to add, even if Maureen's data were well worth listening to. I even got the impression that some of the others were saying as little as possible so as not to trip up under the S4ME gaze.

Edit * Several relevant posts on this thread:

Central origin of fatigability in Myalgic encephalomyelitis/chronic fatigue syndrome revealed by multimodal neuroimaging, 2026, Bedard, Nath, Walitt+​

 
InitialConditions said:
The PEM webinar is now up on YouTube

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I've asked if it is possible to add time stamps to the start of each talk in the description of the video but in the mean time here they are
Maree Candish (Science for ME), 04:21
Professor Mark Faghy (University of Loughborough), 33:38
Marjon Wormgoor (independent researcher), 1:07:24
Professor Todd Davenport (University of the Pacific), 1:47:08
Professor Maureen Hanson (Cornell University), 2:12:30
 
Andy said:
I've asked if it is possible to add time stamps to the start of each talk in the description of the video but in the mean time here they are
Maree Candish (Science for ME), 04:21
Professor Mark Faghy (University of Loughborough), 33:38
Marjon Wormgoor (independent researcher), 1:07:24
Professor Todd Davenport (University of the Pacific), 1:47:08
Professor Maureen Hanson (Cornell University), 2:12:30
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Thanks, Andy. The video seems to start after the webinar began. Assuming it’s not a problem at my end, do you know if that’s an issue that AfME are aware of and whether it can be corrected?

Does anyone know who the person introducing the speakers is?
 
Robert 1973 said:
Thanks, Andy. The video seems to start after the webinar began. Assuming it’s not a problem at my end, do you know if that’s an issue that AfME are aware of and whether it can be corrected?
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I would assume that somebody didn't press the record button early enough on the day.
Robert 1973 said:
Does anyone know who the person introducing the speakers is?
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Daphne Lamirel, Senior Research Manager of Action for ME.
 
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