MRC/NIHR DecodeME Showcase meeting online and in person Nov 6th

[Ash]

I was aware that a meeting was planned, just not that it had a date and agenda and places were going fast. You cannot register for a meeting if you don't know when it is or where to register. Fortunately, people like Jackie Cliff seem to have been informed. But I wouldn't be surprised if a number of other researchers have not been told.

NIHR and MRC seem to be living in a virtual reality of their own.

Don’t they want an abundance of researchers there?

 

[Jonathan Edwards]

Don’t they want an abundance of researchers there?

Presumably not if they have booked only 70 places.

NIHR and MRC still give the strong impression that they aren't really interested in any one except their own cliques. The delivery plan projects provide jobs for their boys and girls but achieve pretty much zilch for actual researchers.

But it will be an important opportunity for some key people to interact.

 

[Kitty]

And for some of us to see faces instead of just names.

 

[Ash]

Presumably not if they have booked only 70 places.

NIHR and MRC still give the strong impression that they aren't really interested in any one except their own cliques. The delivery plan projects provide jobs for their boys and girls but achieve pretty much zilch for actual researchers.

But it will be an important opportunity for some key people to interact.

Oh dear…
This isn’t a surprise. But still a struggle to manage the disappointment that we don’t yet see a change of approach from the people who could- if they chose-help us. If not now when?

 

[Sasha]

I was aware that a meeting was planned, just not that it had a date and agenda and places were going fast. You cannot register for a meeting if you don't know when it is or where to register. Fortunately, people like Jackie Cliff seem to have been informed. But I wouldn't be surprised if a number of other researchers have not been told.

Can anyone reach out to everyone who ought to be invited? (I'm assuming it's not that big a field and that everyone is connected!

 

[Adrian]

Mentioned in the Delivery Plan, https://www.s4me.info/threads/uk-go...fs-published-22nd-july-2025.45222/post-626468

but yes, the lack of effective promotion of the event is disappointing.

I think or hope the intent was to invite researchers who could follow up on decode results. Ideally so follow ups can happen to write research proposals..

But we have no idea who they have invited so hard to know.

(In reality I think this is an event that is being organized by the NIHR to cover for the MRCs complete inability to engage with a process to look at how to stimulate ME research

 

[Adrian]

What is even the reason for limiting virtual attendees?

I think the intent is to have groups discussing different topics in the afternoon and that can be harder with larger numbers (when facilitation is required).

Maybe some findings from WILCO?



He's a STIMULATE ICP investigator right?


This is happening on my birthday so I probably won't be watching but I'm quite interested in what Altmann has to say.

We could ask presenters to record the presentations separately.

I just got a virtual ticket. Anybody else?

Yes I have a ticket.

Can anyone reach out to everyone who ought to be invited? (I'm assuming it's not that big a field and that everyone is connected!

Who would you say should be invited. I assume the ME researchers in the UK will have been (although not clear). Ideally other researchers particularly in areas that decode highlighted should be encouraged to go. To me the ideal outcome of this meeting would be some researchers gathering to form new research proposals. (but I have no idea who was planning invites or who has been invited)

 

[Jonathan Edwards]

(In reality I think this is an event that is being organized by the NIHR to cover for the MRCs complete inability to engage with a process to look at how to stimulate ME research

Interesting comment.
I wonder if the MRC are having difficulty engaging in a meeting when they either already have or intend to turn further work down, which might lead to difficult conversations. I was led to believe that there had been at least some positive movement but it seems we are left to reading tea leaves to know more.

II was reminded in the FME meeting of Tom Kindlon's repeated point that we should expect charities to be doing at least as much heavy funding as government. Maybe we need to turn the collective gaze to the issue of getting a quantum leap in charity revenue based on the success of DecodeME.

 

[forestglip]

I think the intent is to have groups discussing different topics in the afternoon and that can be harder with larger numbers (when facilitation is required).

What do you mean by "facilitation"? I was wondering about what prevents allowing unlimited viewers to watch (if the video streaming license allows) but not interact at all, and can't think of how that would make things harder. I suppose maybe they want to allow some questions from online viewers, but not too many.

 

[Adrian]

Interesting comment.
I wonder if the MRC are having difficulty engaging in a meeting when they either already have or intend to turn further work down, which might lead to difficult conversations. I was led to believe that there had been at least some positive movement but it seems we are left to reading tea leaves to know more.

I think you are reading too much into their intent. As far as I can tell they are completely indifferent. They simply don't want to think about ME.
They are a funding club who current research groups apply to and they are judged by other current research groups. So they keep spending money on the same stuff. Although we hear they have a much smaller budget (and university overhead costs are much higher).

II was reminded in the FME meeting of Tom Kindlon's repeated point that we should expect charities to be doing at least as much heavy funding as government. Maybe we need to turn the collective gaze to the issue of getting a quantum leap in charity revenue based on the success of DecodeME.

I think we need to be building links to find other sources of funding. Charity donations, philanthropists and looking at the possibilities of corporate/VC funding for innovation. By all accounts there were positive discussions in this area from the AfME Winsor event https://www.s4me.info/threads/update-from-the-windsor-castle-research-event-action-for-me.44812/

 

[Adrian]

What do you mean by "facilitation"? I was wondering about what prevents allowing unlimited viewers to watch (if the video streaming license allows) but not interact at all, and can't think of how that would make things harder. I suppose maybe they want to allow some questions from online viewers, but not too many.

There are some discussion sections in the afternoon. So I assume they will form groups, discuss questions and share with the other groups. But I'm guessing.

I would see no reason for not having more virtual people particularly for talks. We may be able to get them replayed (it would be interesting to ask the researchers doing them).

 

[Sasha]

Who would you say should be invited. I assume the ME researchers in the UK will have been (although not clear). Ideally other researchers particularly in areas that decode highlighted should be encouraged to go. To me the ideal outcome of this meeting would be some researchers gathering to form new research proposals. (but I have no idea who was planning invites or who has been invited)

Just alerting @Jonathan Edwards, because I have no idea!

 

[V.R.T.]

Thats very disappointing about the MRC if it turns out to be the case. I was hoping JE was told correctly about a change in attitude.

Perhaps it is a good idea to prepare for the worst then? Have a serious try to scale up fundraising efforts. Surely the worst that can happen if we succeed is that the MRC actually does fund e.g. SequenceME and there is more charity funding available for other work.

Which UK charities do we try to get involved? A4ME and MERUK i reckon. MEA involvement risks us inadvertantly fundraising for more Tyson fronted nonsense.

How would one even go about something like this?

 

[Kitty]

Perhaps it is a good idea to prepare for the worst then? Have a serious try to scale up fundraising efforts.

Ideally they'd need to be fundraising for something. Like David Tuller's appeal—people understand what that is and the benefits of having his post funded, so they donate willingly.

Fundraising for 'general research' is much harder. To really get it energised you need a story and a target.

 

[V.R.T.]

Ideally they'd need to be fundraising for something. Like David Tuller's appeal—people understand what that is and the benefits of having his post funded, so they donate willingly.

Fundraising for 'general research' is much harder. To really get it energised you need a story and a target.

So we need to link up with researchers and charities and figure out what important questions we need answers to that researchers are struggling to get funding to study?

And design individual campaigns fundraising specifically for those studies?

Maybe it could work for a couple of projects if we prioritised the right stuff and involved the right people.

 

[Utsikt]

Isn’t SequenceME by far the most important project to fund next, assuming ResetME/Dara gets fully funded soon-ish?

 

[V.R.T.]

Isn’t SequenceME by far the most important project to fund next, assuming ResetME/Dara gets fully funded soon-ish?

Yes although that is in will-it-wont-it limbo with government funding. Unless anyone has an update? How long do we think until we know whats happening there.

It's hard to effectively fundraise for something when you don't know how much you're asking for.

 

[V.R.T.]

Are there any smaller studies following on from DecodeME or other important stuff that could benefit from fundraising?