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

[Andy]

Following on from the announcement of the funding for phase 2 of SequenceME and LC, we are hosting a webinar on Tuesday, 26th May, starting at 2:30 PM to explain the project, what this latest funding enables, and the plans for the future. Register for the webinar at this link.

 

[Evergreen]

Following on from the announcement of the funding for phase 2 of SequenceME and LC, we are hosting a webinar on Tuesday, 26th May, starting at 2:30 PM to explain the project, what this latest funding enables, and the plans for the future. Register for the webinar at this link.

I'm not able to watch webinars live. Hope a recording will be made available?

 

[Andy]

I'm not able to watch webinars live. Hope a recording will be made available?

Yes, there will be.

 

[Evergreen]

Yes, there will be.

Brilliant, thanks.

 

[Kitty]

Thanks, @Andy!

 

[Kitty]

Coming up in half an hour.

Thank you in advance to everyone who's worked hard to put on this event.

 

[Binkie4]

Missed it! Will look for the recording when it comes.

 

[Jonathan Edwards]

I watched it. Very clear and very encouraging. Nothing particularly unexpected to report.
It seems that they are looking for £30,000 for phase 1 at this point. That seems like a nice target to focus on on the funding side.

 

[Kitty]

Missed it! Will look for the recording when it comes.

Sonya said it might be a couple of weeks (a lot going on), but I'm sure the link will be posted when it's available.

 

[Utsikt]

I watched it. Very clear and very encouraging. Nothing particularly unexpected to report.
It seems that they are looking for £30,000 for phase 1 at this point. That seems like a nice target to focus on on the funding side.

Only £30k? What for?

 

[Kitty]

Only £30k? What for?

Phase 1 is already mostly funded. There's only about £30K left to raise.

 

[Jesse]

Phase 1 is already mostly funded. There's only about £30K left to raise.

What about phase 3? The actual analysis of the data. I wonder how much that will cost?

 

[Andy]

What about phase 3? The actual analysis of the data. I wonder how much that will cost?

Short answer. We don't have a figure at the moment but will have sometime in the near future.

Longer answer. While we have the estimate of £20 million overall for the entire project, so far we have not come up with estimates for the outstanding individual phases. This understandably might seem somewhat counterintuitive, but it mainly comes down to focusing on each phase at a time, and obviously our focus was mostly lately on phase 2.

With phase 2 under way, and with our business development manager now in place, we'll be looking to come up with a budget for phase 3 in the near future. In an ideal world, we would secure enough funding in order to enable us to deliver the remainder of the project in one go as this would be the most cost effective solution; splitting it into seperate phases is likely to end up costing more overall.

 

[Jesse]

Short answer. We don't have a figure at the moment but will have sometime in the near future.

Longer answer. While we have the estimate of £20 million overall for the entire project, so far we have not come up with estimates for the outstanding individual phases. This understandably might seem somewhat counterintuitive, but it mainly comes down to focusing on each phase at a time, and obviously our focus was mostly lately on phase 2.

With phase 2 under way, and with our business development manager now in place, we'll be looking to come up with a budget for phase 3 in the near future. In an ideal world, we would secure enough funding in order to enable us to deliver the remainder of the project in one go as this would be the most cost effective solution; splitting it into seperate phases is likely to end up costing more overall.

Thanks @Andy!

I agree that would make sense if possible. If it's not possible I would prefer to see phase 3 get funded asap as I would hate to see phase 3 get delayed as I think we can learn a lot from it.

 

[JellyBabyKid]

While we have the estimate of £20 million overall for the entire project

Given how long proper research has been held back, and how much ME&LC cost the economy, and successive governments insistence on getting long-term sick folks back into work, this seems like a no brainer to fund - and mere drop in the ocean given the costs of not doing anything.

A point I and our group made to our MP on Friday, and we have agreement to ask lots of PQs on this.

And I know I'm repeating myself, but we need a community wide campaign to put pressure on the government to fully fund this - at the very least - in light of their lack of action for the last 40 years, despite recorded acknowledgement that ME is a serious issue at every debate and in every published report in that time.

 

[V.R.T.]

we need a community wide campaign to put pressure on the government to fully fund this

Agreed, I wish I had the capacity to try and get something like this off the ground. To be honest I don't even know how you'd go about it. But maybe someone on here has the relevant experience.

 

[Beth]

No relevant experience, but a petition maybe? I know they don’t do a lot but sometimes causes pressure, like when they nearly didn’t even start the nice guideline review, had to look back on my Facebook to check I was remembering right, cant believe that was 2017

 

[JellyBabyKid]

No relevant experience, but a petition maybe? I know they don’t do a lot but sometimes causes pressure, like when they nearly didn’t even start the nice guideline review, had to look back on my Facebook to check I was remembering right, cant believe that was 2017

I think it needs to be a multi-pronged approach with PQs, yes, a petition, but a very public campaign by, realistically AfME as the people involved in DecodeME and SequenceME. Something loud, visible and something that individual patients can get involved in as well.

 

[Robert 1973]

I think it needs to be a multi-pronged approach with PQs, yes, a petition, but a very public campaign by, realistically AfME as the people involved in DecodeME and SequenceME. Something loud, visible and something that individual patients can get involved in as well.

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

I guess AfME would need to take the lead but I wonder if this is something that Forward ME could get involved with. I see they have a new chair: https://www.thereforme.uk/p/what-does-the-future-hold-for-forward

Thread here: https://s4me.info/threads/united-kingdom-news-from-forward-me-group.16000/page-19#post-695340

 

[hotblack]

Some ideas to help people if they choose to write to their MP, an organ8ed campaign may help but we don’t need to wait and it all helps https://www.s4me.info/threads/askin...unding-sequenceme-and-wider-investment.45551/