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

[V.R.T.]

Have the members of PRIME made any efforts to recruit BTN geneticists? There are some really interesting clues in the BTN thread, giving plausible leads in a few different directions and I think bringing in experts in the BTN genes and the cells/molecules etc they interact with should be a major priority for the field.

 

[Andy]

Not as a specific PRIME activity. Which isn't to say that it definitely hasn't happened as I won't know what members of the group get up to in their own time.

 

[OrganicChilli]

Register for the 4th PRIME webinar: The Neurology of ME/CFS

Register for the 4th PRIME webinar about neurology in ME/CFS. The webinar is part of the PRIME research project and is online.

www.actionforme.org.uk

https://www.actionforme.org.uk/wp-content/uploads/2026/09/PRIME-Webinar-4-Programme.pdf

Date: Wednesday 28th October, 2026

Time: 2pm-5pm GMT

Location: online via Zoom

We are pleased to announce that registrations for the 4th webinar in the PRIME project series are now open!

The 4th webinar, The Neurology of ME/CFS, will take place on:

Date: Wednesday 28th October, 2026

Time: 2pm-5pm GMT

Location: online via Zoom

Register here!

Joint international researchers for an online workshop that explores neurology in ME/CFS. The workshop will cover why neurology has become such an important area of research in ME/CFS, how findings are shaping future studies and their potential to improve diagnosis, identify therapeutic targets, and ultimately lead to better outcomes for people living with ME/CFS.

These online workshops are open to researchers, healthcare professionals, people with ME/CFS, and the public, and you’ll gain valuable insights into one of the most promising areas of ME/CFS research.

Speakers include:

· James Cox, University College London

· Felipe Correra de Silva – Amsterdam UMC

· Keyla Santos Guedes de Sá – Yale School of Medicine

· Beata Godlewska – University of Oxford

· Jarred Younger – University of Alabama at Birmingham

 

[Jonathan Edwards]

@Andy,
Is there away to get on to tthe direct mailing list for the PRIME events? I currently rely on prompts from S4ME members.

 

[Andy]

@Andy,
Is there away to get on to tthe direct mailing list for the PRIME events? I currently rely on prompts from S4ME members.

There is no mailing list. Currently, all announcements are made through a combination of social media posts and being featured on AfME's website.

 

[Jonathan Edwards]

There is no mailing list. Currently, all announcements are made through a combination of social media posts and being featured on AfME's website.

that seems a pity. I never use social media. I have emailed new UCL neurology contacts about the next one, including Mike Zandi, but I think a number of interested people may miss hearing about them.

 

[hotblack]

Some really interesting looking presentations there! Looking forward to the one on CA10 by @James Cox particular of course
@Andy I assume this will be on YouTube sometime after the event like previous webinars for those not able to attend or follow live?

 

[Andy]

@Andy I assume this will be on YouTube sometime after the event like previous webinars for those not able to attend or follow live?

Yes, I'm not aware of any reason why it shouldn't be.

 

[Hutan]

Just a couple of notes about the 3rd webinar - on YouTube there is a spelling mistake in the heading

PRIME Research Project 3rd Webinar - Post-extertional malaise (PEM)

Also, the AfME website doesn't have a link to the webinar, just a link to the registration page and details about the speakers. And the Prime website doesn't link through to the webinar.

 

[Hutan]

The PRIME Neurology webinar is on now - just the last two speakers to go, and perhaps some panel discussion.

 

[Jonathan Edwards]

Excellent webinar again.

(And James gave the forum a nice plug.)

 

[Robert 1973]

I only managed to watch the second half of the PRIME webinar but it was refreshing to hear a psychiatrist, Beata Godlewska from Oxford University no less, talking sense about ME/CFS. (She made the point that she is also a neuroscientist.)

It’s almost as though I’m not prejudiced against psychiatrists being involved in ME/CFS research, just psychiatrists with unhelpful beliefs who talk nonsense.

 

[Jonathan Edwards]

i sensed a real feeling of common ground and desire to collaborate across all barriers. I have not been a great fan of metabolic theories about lactate but the data look interesting and I see no reason why these things should not make sense together. Maybe the CA10 synapses are connected to the neurohumoral bone, which is connected to the microglial bone, which is connected to the itaconate bone, which is connected to the lactate bone ...
Hear the Word of the Lord!!

(first recorded by The Famous Myers Jubilee Singers in 1928)

A psychiatrist studying lactate! What next.

 

[SugarSquared]

I look forward to watching the webinar when it is published! At least I am assuming it will be available on Action for ME's YouTube page just as the last one was.

 

[neophyte32]

Will there be a written summary available somewhere?

I'm too severely ill to follow a webinar in English. I'm very interested in this one, much more so than the talks given by the more high-profile researchers.

 

[V.R.T.]

i sensed a real feeling of common ground and desire to collaborate across all barriers. I have not been a great fan of metabolic theories about lactate but the data look interesting and I see no reason why these things should not make sense together. Maybe the CA10 synapses are connected to the neurohumoral bone, which is connected to the microglial bone, which is connected to the itaconate bone, which is connected to the lactate bone ...
Hear the Word of the Lord!!

(first recorded by The Famous Myers Jubilee Singers in 1928)

A psychiatrist studying lactate! What next.

Very encouraging!

Did someone present some data on itaconate then?

 

[Jonathan Edwards]

Did someone present some data on itaconate then?

No, but the spirit was there, I think. It was mentioned in the chat.