Webinar: SequenceME & Long Covid Phase 2 funding, May 26, 2026 02:30 PM UK

[JellyBabyKid]

It would be good if the main charities and organisations could work together on this with a coordinated strategy.

Yes. Exactly.

I wonder if this is something that Forward ME could get involved with. I see they have a new chair

I am in contact with the chair of ForwardME, as she is a leading member of MELN

 

[NelliePledge]

That’s good @JellyBabyKid. In my opinion They - Forward ME- need to be pressing the APPG to get on with the review/report on severe/very severe. The two things that everyone involved in advocacy should be focused on is addressing the risks for people with very severe ME/CFS and funding for SequenceME. Those are very specific and progress as well as being very important individual issues will raise the profile of ME/CFS.

 

[SugarSquared]

The video has been uploaded onto YouTube!

Link: Sequence ME and Long Covid Webinar May 2026 by Action for ME. Video length is 59:28 (slides from 00:00-29:26, general discussion and Q&A from 29:27-59:28)

It seems to be the same slides from today’s SolveME webinar, though no doubt the discussion and Q&A will be different.

 

[Jonathan Edwards]

It seems to be the same slides from today’s SolveME webinar, though no doubt the discussion and Q&A will be different.

The material is much the same but the discussion touches on different issues as things move forward. For me the big message is the international co-operation and mutual respect across the patient and science communities. This is 'open' research if anything ever was.

 

[Felis Catus]

I'm not able to watch the video(s). Could someone provide more details on the international co-operation that JE mentioned?

 

[Jonathan Edwards]

I'm not able to watch the video(s). Could someone provide more details on the international co-operation that JE mentioned?

Just that Solve ME is involved, as well as other funders like WE and ME and that there is sensible constructive and enthusiastic dialogue going on in a webinar advertised at 11.am Pacific Time for a UK based project that involves people and resources all over the place.

 

[Felis Catus]

Just that Solve ME is involved, as well as other funders like WE and ME and that there is sensible constructive and enthusiastic dialogue going on in a webinar advertised at 11.am Pacific Time for a UK based project that involves people and resources all over the place.

Thank you.

 

[hotblack]

Really good webinar, Chris communicating well and being inspiring as ever and always great to hear @Andy
Thanks to all involved. I’m always impressed with what Sonya has brought to AfME and the political and organisational stuff it takes behind the scenes.

Agree that the sooner we can get commitment from government for the next stages the better. It’s a drop in the ocean in their budgets for the scale of the problem or the neglect over so many years. And this is the path to answers which will bring in drug companies and their money.