What ME/CFS research, funded by UK sources, is currently in process (as of end June 2019)?

That's brilliant. Thanks.

 

Thank you @Andy an important piece of work - thank you.

Felt slightly sick when I read what MRC was funding and feel that all our children are going to be re-diagnosed with FND. Has anyone looked closely at how they can determine Functional?

Now going to sit in a corner and drink a bucket of coffee as this just gives me the collywobbles

 

Something something auras and Tarot cards. Or just about as credible anyway.

As we've seen many times when the quiet part is said out loud: it's not about the substance of the BS, it's all about being confident in narrating the BS. The semantics are the trick they play, none of them actually believe in the substance. They all know it's just a convenient lie, same as the last one and identical to the next one, and the next, and the one after.

 

Thanks for this useful research information. I’d be interested in individual amounts too. If sum total is just £0,5m I’ve been over stating our capacity in my emails of complaints to funders.

I think that the community needs to decide if it thinks that the MRC and government could and should intervene more and if yes we need to organise and lobby rather than accept defeat Or continue operating in a random individual way. We haven’t been lobbying and I don’t understand why. I have written three significant letters in the last year but just receive dismissal and status quo justification because there’s just a trickle of complaints to brush off. However If each person affected and a significant other lobbied it would be around a million people sending letters or protesting in person which surely would be a force to reckon with and might turn the heads currently in gear to just brush us off . We could petition, we could try to get more heavy weights on our side etc. If we really believe we have just cause.

If nih had said to Jen brea at last meeting that’s All for now folks, but we weLcome HQ applications I don’t think shed have just said ok then as our charities have. If nih had only done their one involved study and nothing else, I think that the hand for more would have been out.I don’t think the MRC feel under any significant pressure from our community. In fact I think that having acquiescent charities to work with who have completely accepted the establishment time frame, is letting them get away neglect. The last 7 years have just been a drought in funding we couldn’t afford and whilst clearly it was hoped the MEGA type research would get funding, CMRC didnt have to put all eggs in that basket, if charities had responded to an MRC refusal to play ball on encouraging research through funding incentives with a well “we will campaign on this then attitude”, sorely lacking in U.K. afaic we might have had more to show.

What happened, for those who don’t know in 2012, when we received our first ring-fenced funds , our charities asked for a continuation, in fact , unusually sir peter Spencer of AFME was according to the minutes quite direct and firm on the “need” for that but the MRC rep. stated that a highlight notice would continue the momentum sufficiently, and it simply hasn’t, so that’s a point to make in itself.

If people want to read the minutes it’s here:
https://www.meassociation.org.uk/wp.../CHAIR-APPROVED-APPG-ME-Minutes-24-01-12-.pdf

 

As, from memory, only the ME Association (of the charities) listed how much each project had been funded I decided not to put figures for any.

The problem I think there is that while we can talk about THE community, it's not a cohesive mass of people. I would argue that the vast majority of people affected by the situation surrounding ME and how it is treated aren't engaged with the community, and those that are more likely to be more seriously affected, and therefore less able to take action. That doesn't mean they can't take action but, in order to maximise the number who will take action, they will need assistance.

I certainly don't agree with the blanket suggestion that the patient community as a whole has accepted defeat, especially when it's made on this forum.

Well, if we accept the often-quoted 250k pwME then it would be 500k.

But NiH has just said exactly that at the IiME conference. And almost all of our charities are now involved in Forward ME, which, as you know, includes Carol Monaghan, so greater, and more organised, work is being done to change political attitudes here in the UK.

See above point. Also, why are charities funding research if they have accepted the establishment time frame? By doing this they are obviously trying to advance it. Would I like our charities to achieve more? Yes, I would, but I'd ask the question, have they had the funding in order to achieve more?

 

Amendment to the list.

Added details on a study that is being conducted by Professor Duncan Baird, Cardiff Uni, at the bottom of this post, https://www.s4me.info/threads/what-...rocess-as-of-end-june-2019.10232/#post-180880

 

I think one of the ways we can help raise money for ME, even if we have very little income ourselves, is to promote the efforts of those who're doing eye-catching fundraising drives. For instance, I've invited people in my social media groups to donate to ME charities before, and had little response; however, sharing information about and donating to Mike's EU Marathons has had more success.

It often feels as if everyone's trying to push the name of their favourite charity on social media, to the point where the very word 'charity' induces a kind of fatigue. Mike's story, on the other hand, is so exceptional an effort by an individual that it still manages to attract attention. The name and some of the imagery has been useful too, as many of the folk I know are enthusiastic Europeans; in the current political situation, simply seeing the flags of European countries provokes a sympathetic response. The approach might seem a bit cynical, but we're literally fighting for our lives here...after four decades and counting, I'm making no apology for bandwagon-jumping!

 

Effectively, the only time the MRC has funded biomedical research was then (and it funded one follow-up study), and that was in response to an Early Day Motion signed by 123 MPs. In other words, the MRC has only responded to political pressure, never to patient pressure.

 

I don’t think theres been any patient pressure since 2012, I don’t recall much before, unless there were petitions etc. I actually there was some patient pressure at time of the EDM too wasn’t there, I think I recall an email campaign around same time led by jan Laverick who was connected to the MP leading edm, unless I’ve got that completely wrong.
The 2012 funds was also supposedly the culmination of the me expert group stuff wasn’t it, they’d been deciding on priorities and having workshops etc.
I mean to me the main fact is the MRC have been involved since after 2002 cmo report and have just put in a few million over all that time which is unacceptable and as said above we are fighting for our lives. Me accepting their time frame and incremental approach is like me saying ok I will happily write my life off because that is the consequence. I think applying patient pressure in an organised radical, determined way in the spirit of “unrest” is definitely what the MRC deserve, unpalatable as it might be to them, as they unfortunately haven’t been called to change by those “in charge” in the political debates in parliament. MRC Also didn’t move in response to Gibson inquiry of parliamentarians

 

The MRC did set up a committee in response to the 2002 Chief Medical Officer report, re-formed it and re-named it after the Gibson Report of 2006 (under Holgate), and it was re-formed and re-named again under Holgate as the CMRC. So in various guises, it has run since 2002. The total spent by the MRC on biomedical research over the last 40 years must be about £2 million: most of it in the £1.6 million earmarked in 2012. Even when you include all the money they have spent on psychosocial research, the total can't come to much over £10 million over the last 40 years.

Setting up committees is a standard organizational ploy to deflect a problem.

I believe they are deeply, institutionally prejudiced against ME research, and it will need a massive political campaign to change that. Patients need to drive that campaign.

 

Just wanted to make a note here that I had fully intended to revisit this topic after 6 months. However my involvement with the GWAS project has taken all of my spare capacity, so I don't see me coming back to this for the time being. I would be delighted if someone else took on the task, and even more delighted if someone did the same but for other countries - equally I'd understand if nobody had the capacity to do so.

 

Updated list available in this thread, What ME/CFS research, funded by UK sources, is currently in process (as of end Jan 2022)?