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

[Kitty]

Perhaps they are planning to do at least some of the analysis with the ME/CFS samples with whatever funding they've secured now and then do the long covid part and compare the two when they can? That occured to me the other day as a possible logical move.

You'd think so, especially as Oxford Nanopore presumably only has the capacity to sequence so many samples per week (or whatever).

Sonya indicated that they were hoping to hear back this month about US funding. I don't how much they've applied for, but hopefully there'll be some news on it relatively soon.

 

[Jonathan Edwards]

I feel we need a plan!

I have a plan. Others can have plans if they like, too.
People are people. Nothing is rational.

 

[Simon M]

The data provide a variety of measures of disease dynamics. Audrey stayed with us Wednesday night and also showed me work she has been doing with Simon on age of incidence profile which are to me pretty mind-blowing. Clues from the old Norwegian study look as if they are replicable. We should set up a thread if Simon is happy for us to dig in to this (it may not quite be ready). To me it looks as if there is a totally novel aspect to ME/CFS disease dynamics worth a very deep look at.

I'm glad you think that. I am biased, but I've been stunned by the findings. Most of it down to Audrey (unfortunately, my health is lousy , so I've been able to contribute less and less as time has gone on). I think it's probably too soon to discuss publicly, though I'm glad you've seen the results. The plan is to submit the paper soon, and if reviewers react the same way you do, we could have a decent shot.

 

[Jonathan Edwards]

The plan is to submit the paper soon, and if reviewers react the same way you do, we could have a decent shot.

Yes, well I could always be a reviewer. I have no conflict of interest.
The data are so elegant that I would like to think others might give it the thumbs up.

And Audrey says it is all down to you.

 

[Simon M]

And Audrey says it is all down to you.

That is extraordinarily generous of her, and not very accurate! I got the project started and had a lucky break. But it was when Audrey stepped in that things became seriously impressive.

 

[Kitty]

Well, I can't wait to hear more about this!

 

[V.R.T.]

I have to say I am deeply disappointed in the MRC continuing to stifle progress. Not the birthday present I was hoping for!

But I'm glad to hear things are ticking along nonetheless.

Clues from the old Norwegian study look as if they are replicable.

Which study are you referring to here?

 

[Jonathan Edwards]

Which study are you referring to here?

There is a Norwegian study of age at incidence for ME/CFS. There will be a thread here. I may be able to trace it but I am not good at searching.

 

[Jonathan Edwards]

Maybe try this thread

Thread 'The two age peaks in onset of ME/CFS'

Dec 21, 2018

@Jonathan Edwards, I remember that in the other place several of us had a long discussion about what could explain the two peaks in onset-age for ME/CFS.

I just saw the graph that we were discussing reproduced in Slide #25 of Karl Morten's recent talk in NZ:

https://www.meassociation.org.uk/wp...uckland-Karl-Morten-Presentation-12.12.18.pdf

On it, he says, 'Two age peaks in CFS/ME: Do they have the same cause?'

I thought that was interesting - I don't recall that we thought about the possibility that we might be looking at two different things causing the...

• Sasha
• aetiology bakken discussion thread epidemiology incidence karl morten microbiome norway two age peaks
• Replies: 46
• Forum: Epidemiology (incidence, prevalence, prognosis)

• 

 

[Utsikt]

I have to say I am deeply disappointed in the MRC continuing to stifle progress. Not the birthday present I was hoping for!

But I'm glad to hear things are ticking along nonetheless.


Which study are you referring to here?

There is a Norwegian study of age at incidence for ME/CFS. There will be a thread here. I may be able to trace it but I am not good at searching.

Can’t find a thread for it, but here’s the study:

Two age peaks in the incidence of chronic fatigue syndrome/myalgic encephalomyelitis: a population-based registry study from Norway 2008-2012 - BMC Medicine

Background The aim of the current study was to estimate sex- and age-specific incidence rates of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) using population-based registry data. CFS/ME is a debilitating condition with large impact on patients and their families. The etiology is...

bmcmedicine.biomedcentral.com

 

[sneyz]

There is a Norwegian study of age at incidence for ME/CFS. There will be a thread here. I may be able to trace it but I am not good at searching.

https://www.s4me.info/threads/the-two-age-peaks-in-onset-of-me-cfs.7326/

edit: Not it, but the study is mentioned. On the same topic.

 

[SNT Gatchaman]

I've made a thread at Two age peaks in the incidence of chronic fatigue syndrome/myalgic encephalomyelitis: a population-based registry study from Norway 2008-2012 (2014)

 

[hotblack]

Thanks for all info from the day, especially to @Adrian and @Jonathan Edwards for the updates. It sounds like some of the usual issues hit but also raised well and a lot of the right people in the room and meeting and discussing which is positive. And hopefully some interesting papers on the way too!

 

[Adrian]

Always interesting to hear people mention differences between MRC v NIHR funding and wonder how much is linked to heir respective departments and remits (DSIT vs DHSC). I”d be interested in understanding more.

I suspect a lot is linked to the different departments. With the delivery plan there has been ministerial attention from DHSC and so more has happened. Other departments have not really engaged.

 

[Adrian]

Could it be just a matter of tapping the right people on the shoulder, like you've started to do? We can't afford to wait for a sea change. We need things like Sequence ME & Long Covid funded now. If the right people are there, and they want to be reviewers, can they put themselves forward and expect to be able to serve as MRC reviewers for ME/CFS proposals, or will they encounter resistance?

I feel we need a plan! I hate to just sit here when we can see what the problem is and there might be ways to solve it. This is a hugely important issue. We're talking about turning on the tap of UK government funding for ME/CFS.

In terms of the MRC we have been trying to talk to the right people and there is no movement. It feels like there won't be unless there is a political will to change. Its not helped by big cuts of the research council budgets (coupled with large increase in university overheads I think things are very limited). I don't think there is a will to fund ME from the MRC perspective either.

What I find surprising is the MRC have no notion of strategy in terms of looking at where money should be invested (i.e. looking for the research gaps and exciting areas). They rely on the research community putting in proposals and reviewing them which will tend to favour the existing groups. So when Stephen asked them about why ME wasn't considered strategic they seemed confused at the notion that they should have a strategy. This wasn't a surprise as it reflects other conversations that we have had with the MRC.

I suspect its better to look for other sources of funding (philanthropy, industry (VCs)).

I did think the presentation by precision life was interesting from the perspective of getting industry involved. Although it looks like there business model involves Innovate-UK grants to explore potential areas. An innovate UK representative did say that more grant possibilities are opening up - it sounds like there was little money available in the last year.

 

[Sasha]

In terms of the MRC we have been trying to talk to the right people and there is no movement. It feels like there won't be unless there is a political will to change. Its not helped by big cuts of the research council budgets (coupled with large increase in university overheads I think things are very limited). I don't think there is a will to fund ME from the MRC perspective either.

Horrifying about the lack of strategic thinking. But would be possible to change things by getting better reviewers in? If an ME/CFS proposal was positively reviewed and was approved by the panel (I'm getting the impression that the panel isn't the problem), would it be funded?

Can reviewers be non-UK? Don't we have some people here on S4ME who would be excellent reviewers?

 

[Adrian]

Horrifying about the lack of strategic thinking. But would be possible to change things by getting better reviewers in? If an ME/CFS proposal was positively reviewed and was approved by the panel (I'm getting the impression that the panel isn't the problem), would it be funded?

Can reviewers be non-UK? Don't we have some people here on S4ME who would be excellent reviewers?

They do have some proposals around this. I'm not sure when they will action them,

 

[JellyBabyKid]

o What are the important outstanding research questions?

Seriously?!

Weren't research questions identified as part of the NICE guidelines? Didn't we also have the James Lind priority setting partnership?

How are we still in a scoping phase?!

 

[Kitty]

How are we still in a scoping phase?!

It sounds like one of those questions you have to ask at a conference.

Anyways, whilst we do know some of the important questions, there is always scope for people to ask new ones that we hadn't thought of—questions that open up a different way of thinking about a problem.

 

[V.R.T.]

So instead of the MRC having a change of heart, it appears they are being as obstinate as ever.

We are stuck in the same catch-22 of needing the political will to change things and get funding but there seemingly being no way to have political will without compelling findings. So hopefully DecodeME and other recent developments are compelling enough.

It seems like getting physicians interested who could be reviewers is one way around this. And obviously hugely beneficial whether the MRC wakes up or not. And JE and others are across that side of it.


But as for the rest of us, is it time for some kind of protest campaign? If we need to change minds on the political side and asking nicely is getting us nowhere I can't see any other strategy...although we are all so sick, that's the problem i suppose. But I am thinking of the success of things like ACT-UP. Long covid is devastating people globally, and the idea that it will go away in a year or two and doesn't affect children has been shown to be a lie. Perhaps with DecodeME and other emerging evidence, this is the moment?

The bodybags campaign in germany is quite striking, but I think the UK BPSers would inevitably use it as evidence of death threats. We would need something peaceful and accessible that people really payed attention to and highlighted our plight. Which is a conundrum.



On another approaches, it sounds like its time for that great leap forward in charity fundraising. @Adrian you said the 3 big charities are aligned on how to push research. How do we get the ball rolling?

And on the VC front, how do we make clear MECFS is a good area to invest in with a potentially collosal payoff in terms of drug market?