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

[Dolphin]

As I will be ‘falling over the edge’ of a Great Birthday, I decided to set up a fundraising page for the U.K. ME/CFS Biobank, which I did, only today! It is not ready for use yet and I hope to use it for any small fundraisers my family will do or instead of BD gifts.

That's brilliant. Thanks.

 

[Tilly]

Public funding.

The UK Research and Innovation Gateway website (https://gtr.ukri.org/) can be used to search for funding granted from the UK’s Medical Research Council, as well as many other bodies - however it doesn’t include the National Institute for Health Research.


The results below come from searching for “chronic fatigue syndrome”, no other search term returned any results. Actual search used, https://bit.ly/2IEv06j

Medical Research Council
Functional neurological symptoms and cortisol.

Current research studies

A Unified Mechanism for Functional Neurological Symptoms, Mark Edwards, St Georges University of London

“The aim of the work proposed here is to test a novel pathophysiological theory of functional neurological symptoms. We will build on existing work in patients with functional movement disorders and functional sensory loss to test if this theory can also provide a convincing mechanistic explanation for paroxysmal motor symptoms (non-epileptic attacks) and interoceptive symptoms (fatigue). We will combine this work with experimental studies in patients with functional motor symptoms before and after treatment. This will assess the link between change in clinical symptom severity and change in markers of our proposed pathophysiological mechanism and will demonstrate its relevance to clinical symptomatology and provide potential biomarkers for use in future therapeutic studies.”

Read more here, and a discussion thread on this project, especially on the grouping of ME/CFS with “functional movement disorders”, is here.


Glucocorticoid dynamics in health and disease, Stafford Lightman, University of Bristol


This study will “investigate the mechanisms underlying the increased mortality and morbidity in these patients [with Addison's disease, but also other conditions associated with apathy and abnormal adrenal activity such as depression, PTSD and chronic fatigue syndrome], by studying the importance of oscillating levels of cortisol both in an animal model and in man. In the animal model we will investigate the biological mechanisms through which pulsatility affects neural function both at the level of cellular function and animal behaviour. In human volunteers we will use brain scanning (fMRI) and changes in pupil size to look at the brain pathways responding to changes in cortisol pattern.”

Read more here, and a short forum discussion thread can be found here.
https://gtr.ukri.org/projects?ref=MR%2FR010919%2F1

Economic and Social Research Council
ME as a Central Sensitivity Syndrome and as a “female-prevalent condition” in need of a “effective gender-centred psychological treatment”.

Current PhD projects

A Mixed Method Exploration of the Association between Autism and Central Sensitivity Syndromes, Sarah Grant, King’s College London


“This PhD project has several research goals; firstly, to establish whether there is an association between these illnesses ['Central Sensitivity Syndromes' (CSS) such as Fibromyalgia Syndrome (FMS) and Chronic Fatigue Syndrome (CFS)] and ASD [Autism Spectrum Disorder]; secondly, to explore whether any association is mediated by gender effects; thirdly, to look at common diagnostic experiences of people with CSS, and investigate how autism might affect the diagnostic journey; and finally, to explore how autistic traits might affect illness beliefs and management for those people with symptoms of both conditions.”

Read more here, and a forum discussion thread can be found here.


What counts as a premenstrual symptom? Patient and expert health professional perspectives on PMS (Premenstrual Syndrome), Sally King, King’s College London

“The main aim of this research is to explore how and why certain premenstrual symptoms achieve relative prominence over others, by examining 'expert' clinical constructions of PMS, alongside the experiences and perspectives of 'PMS sufferers'. It builds on the work of Prof. Jane M Ussher, in particular, whose research examines the gendered factors underlying the psychological symptoms of PMS, and identity in relation to the reproductive body.


Just as Ussher went on to develop an effective gender-centred psychological treatment for PMS, it is hoped that this research will also directly contribute to the integration of research and clinical practice. Especially in relation to the diagnosis and treatment of PMS, and associated female-prevalent conditions, such as; anxiety, asthma, chronic fatigue syndrome, depression, IBS (Irritable Bowel Syndrome), and migraine.”

Read more here, and a, very short, forum discussion thread can be found here.

National Institute for Health Research

The National Institute for Health Research (not to be confused with the USA-based NiH) does not seem to have a similar site, or option on their website, to allow for easy searches of funded research; my Google skills were insufficient to reveal anything of use, although there is, undoubtedly, research ongoing - past experience thought would strongly suggest that this will be of the psychosocial persuasion.




Rejected applications for public money



Dr Karl Morten, Oxford University.

Dr Morten, an experienced mitochondria researcher, became interested in ME/CFS research a number of years ago, when he was encouraged to by a patient, Jamie Strong, who, as it happens, now works with Dr Morten.

Dr Morten’s ambitious project (see image below) was put to the UK’s Medical Research Council, asking for close to £2 million of funding. Unfortunately, despite a number of reviewers rating the proposal highly, the MRC seemingly considered the project to be too ambitious and turned it down. As there is no opportunity for appeal, Dr Morten is assessing his options; should he modify his proposal to satisfy the reviewers who were less keen and, after the mandatory 12 months wait, as per the MRCs rules, and then resubmit it? Or should he look for other sources of funding which, typically for the ME/CFS field, means the charity sector and/or public crowdfunding.

Updates from the group, including any potential decision to raise funds via crowdfunding, can be found on the forum here.

An additional disappointment is that, to my knowledge, this is the only recent application for UK public funding of ME/CFS research. The public funding bodies can’t grant funding if they don’t receive applications.



Potential applications for public money


CMRC, Genome Wide Association Study.

Information has been released recently that the CMRC (CFS/ME Research Collaborative) have been in discussion with the MRC about putting an application in for substantial funding for a Genome Wide Association Study.


Simon McGrath has written a blog about this proposed application here, and forum thread here.


*****
Thanks to all my patient proof-readers, I appreciate each and every suggestion you made, even those I may not have used.

If I have missed something, got something wrong, or you have a suggestion, either comment below, PM me on the forum, or email me at andy [at] s4me.info

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

 

[rvallee]

how they can determine Functional?

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.

 

[Cinders66]

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

 

[Andy]

I’d be interested in individual amounts too.

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.

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

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.

However If each person affected and a significant other lobbied it would be around a million people

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

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.

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.

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.

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?

 

[Andy]

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

 

[Kitty]

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!

 

[Graham]

In theory, the funding bodies are independent of our political system, but if enough pressure is put on our MPs then they will find ways to pass that on to those funding bodies who have been failing us so dramatically over the years.

What happened, for those who don’t know in 2012, when we received our first ring-fenced funds

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.

 

[Cinders66]

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

 

[Graham]

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.

 

[Andy]

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.

 

[Andy]

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