Do you have any ideas for topics for PRIME seminars?

[Sasha]

How about something on the epidemiology of ME/CFS? When we were doing the 'Intro to ME/CFS' factsheet, the absence of basic facts about ME/CFS was striking - how many people have got it, recover from it, die from it, are housebound, are bedbound, are in the 'very severe' category, timecourse, the whole shebang.

It would also be good to be trying to nail down how Covid alone is affecting numbers, given that it's now endemic and still raging.

Surely we need this stuff, not least for planning and providing services, including the roll-out of any drug that proves effective, such as dara.

 

[Sasha]

What about a seminar on the overlap between ME/CFS and Covid? It's weird that Covid research seems epic in its disregard for the ME/CFS subcohort.

 

[Trish]

I'm surprised so many of the suggestions on this thread are non biomedical.
I took a look at the information about PRIME:
https://www.actionforme.org.uk/new-research-project-prime/

The aims of PRIME are:

1. Coordinate and engage researchers by creating at least 15 new research collaborations. We will bring together researchers from a range of backgrounds, along with private sector partners to investigate the genetics, biomarkers and disease mechanisms behind ME/CFS.

2. Strengthen International Research Networks by forming two global consortia, one with a focus on genetics and the other on molecular biomarkers. The aim of the consortias will be to share data, replicate research and create a shared research standard.

3. Build a Public and Patient Involvement (PPI) pool with at least 100 trained contributors (people with ME and their carers). This will be the world’s first large scale PPI pool available for ME researchers across the UK so that their research can be created and shaped by people with lived experience.

This tells me that the seminars would be best to focus on biomedical topics that might draw in researchers who haven't yet taken any interest in ME/CFS to put together research proposals to investigate some of the areas highlighted by DecodeME.

I really don't want a biomedical project to be diverted into running seminars on problems with questionnaires used by clinics to prop up BPS, or problems with medical care in the NHS, etc. This needs to be studied, but not by this group, I suggest.

I would like there to be research on mitochondrial DNA, since DecodeME only looked at nuclear DNA and there has been so much about mitochondria that seemed significant in past research but hasn't been replicated.

I also have a particular concern about the claims in the BACME dysregulation model. I would like there to be research digging into whether each aspect of this has a sound biological basis in ME/CFS.

 

[hotblack]

Perhaps having the aims of PRIME as a primer (sorry) would have been useful reminder for this thread and context for the question? Thanks for posting them @Trish

I think the suggestions here about questionnaires were specifically about those used in scientific studies rather than those used by clinics, although I guess often they end up being the same ones.

Good point about mtDNA, another reason we need SequenceME.