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

My aim with this is to draw together brief details of all the ME/CFS (and all other variants on that name) research funded by a public, private or charity UK source that is currently ongoing today.

I’m relying on information that has been made publicly available, so there is a good chance I will miss something; as I intend to update this on a semi-regular basis please let me know of anything I have overlooked.


Charity funding.

The charity/private sector has been, and is likely to remain for the foreseeable future, the most likely source of funding for ME/CFS research, particularly biomedical research. Public sources of funding will tend to want any potential research to build on evidence from previous studies meaning they are not keen on funding scientific ‘voyages of discovery’.

This, to a point, is understandable, but in a neglected condition such as ME/CFS where we don’t know what we don’t know, it makes it hard to build up a base of scientific knowledge.

Presented in alphabetical order of charity name.




Action for ME

Autonomic dysfunction, T-Cells and neuro-inflammation.


Current research studies

Autonomic Dysfunction Feasibility Study, Julia Newton, Newcastle University

“checking if people with M.E. are willing and able to participate in a six-week non-pharmacological intervention programme, and the effect this has on their symptoms [light-headedness and dizziness]”

Read more here.


PhD studentship: Healthy Control to ME/CFS T Cell Comparison, Chris Ponting University of Edinburgh

This study “investigates whether a person with M.E. differs in their T cell repertoire from healthy controls. This is important because such differences could indicate an ongoing response to infection or autoimmunity.”.

Read more here, Simon McGrath wrote more on this here, and we discuss it here.


PhD studentship: Neural Responses to Inflammation, Neil Harrison, Brighton and Sussex Medical School

This “project will focus on differences in brain activity between people with M.E./CFS and fibromyalgia using state-of-the-art HCP (Human Connectome Project) resting state functional connectivity imaging.

It aims to investigate the neural responses to mild inflammation and how these might contribute to fatigue, post-exertional malaise and pain, and correlate with abnormalities of interoception, immune and autonomic nervous system function and metabolism”

Read more here, and this thread has some discussion of the study.





Invest in ME

Leaky gut, autoimmunity and viruses.


Current research studies

A role for a leaky gut and the intestinal microbiota in the pathophysiology in ME, Simon Carding et al, Quadram Institute

“This project will determine if alterations in intestinal barrier function and/or microbiota exist in ME patients, and whether microbe-driven inflammatory responses can provide an explanation for the pathophysiology of ME.”

Read more here.


Defining autoimmune aspects of ME/CFS, Simon Carding et al, Quadram Institute

“The aim of this PhD project is to test the hypothesis that ME is an autoimmune disorder originating in the gut as a consequence of altered intestinal permeability (leaky gut) leading to exposure of the immune system to commensal gut microbes and their products and the generation of pathogenic (auto) antibodies cross-reactive with antigens expressed in the central nervous system (CNS).”

Read more here.


Gut viruses and ME/CFS, University of East Anglia

“This PhD project will investigate whether the underlying causes of ME are related to the presence of specific virus populations within the gut virobiota. Using high throughput DNA/RNA sequencing technology and bioinformatics tools we will determine if and how both resident gut bacteria and virus populations changes with disease progression and if a distinct virobiota signature can be identified in ME patients.”

Read more here.




ME Association

Supporting the UK ME/CFS Biobank, looking at metabolites, microRNA, immune system and energy production.


Research infrastructure

The ME/CFS Biobank at the Royal Free Hospital in London

Not exactly research but a resource that I personally consider extremely important - currently the ME Association’s Ramsay Research Fund (not to be confused with Solve ME/CFS Initiative’s Ramsay Award Program) covers all the basic running costs of the ME/CFS Biobank. Samples from the Biobank can reduce the cost per sample dramatically, meaning that scarce research funds can go further, and that sample analysis can start within weeks, rather than months.


Current research studies

Examining metabolites in ME/CFS, Karl Morten et al., Universities of Oxford and Newcastle

This team is looking for “patterns of metabolites [a substance formed in or necessary for metabolism] that could help to form either a diagnostic test for ME/CFS or help to sub-group people that come under the ME/CFS umbrella”


Examination of MicroRNA profiles in peripheral blood mononuclear cells (PBMCs) and exosome-enriched vesicles in ME/CFS, Professor Elisa Oltra et al., University of Valencia

This team is aiming to “build up a detailed picture of changes in what are called microRNA profiles.” MicroRNA influence how our genes operate.


Examination of immune system status and energy metabolism in ME/CFS, Dr Luis Nacul et al, LSHTM ME/CFS Biobank team and University College London

“This new research study will further examine both immune system dysfunction in ME/CFS and defects in the way that energy is being produced at a cellular level.”


The ME Association provides an overview of the Biobank and the above studies here.


Research completed but yet to be published

Comparison of results from a commercial and NHS blood test to assess mitochondrial function in ME/CFS, Boulton et al., University of Newcastle (Unpublished)

“This study has been comparing the results of a commercial blood test for mitochondrial function that has been developed by Dr Sarah Myhill and colleagues with the results from an international and widely accepted test that has a long and successful track record in clinical diagnosis and research of muscle disease particularly in the UK.”


Immune system dysfunction in ME/CFS, Todryk et al., University of Newcastle (Unpublished)

“This is a 16-month study that examined the way the immune system responds, particularly against infections, in people with ME/CFS.”

For more information on the two studies above, see here.





ME Research UK

Gut microbiome, investigating AMPK, oxidative stress, autoimmunity, neuro-inflammation and genome investigation.


Current research studies

Research in the UK

Comparing ME/CFS and IBS: gut immune and microbiome changes, Yan Yiannakou, Newcastle upon Tyne Hospitals NHS Foundation Trust

“Following clinical assessment, blood samples will be collected to analyse a variety of markers of immune activation, while stool samples will be taken from which to measure changes in the faecal microbiome using DNA analysis.”

Read more here.


Investigating abnormalities in AMPK activation, Mark Walker, Newcastle University

This “project will use specific AMPK activators (used in the treatment of other diseases such as diabetes) to explore the mechanism through which AMPK is activated pharmacologically, but is not activated by muscle contraction. The researchers will also examine the function of the mitochondria (the powerhouses of the cell) in ME/CFS patients and healthy control subjects.”

Read more here.


Combating oxidative stress, Faisel Khan, University of Dundee

The goal of this study is “to investigate the role of ‘nuclear factor erythroid-derived 2’ (Nrf2). This is an extremely important regulatory protein in the body, and is now believed to be a master activator of the body’s natural defence against oxidative stress.”

Read more here.



Research outside of the UK

Exploring an anti-citrullinated antibody signature in ME/CFS, Mercedes Rincon, University of Vermont

“The characteristics of ME/CFS suggest the involvement of autoantibodies in that illness, and Prof. Rincon’s team plans to look specifically for autoantibodies targeted on citrullinated proteins. Using blood samples obtained from the UK ME/CFS Biobank, the researchers will compare autoantibody levels between ME/CFS patients and a group of healthy control subjects.”

Read more here.


Tracking peripheral immune cell infiltration of the brain in ME, Jarred Younger, University of Alabama

“The central hypothesis [..] is that activated immune cells from elsewhere in the body infiltrate the brain, so driving these symptoms of ME/CFS.”

Read more here.


The role of autoantibodies in ME/CFS, Madlen Löbel & Carmen Scheibenbogen, Charité University Medicine Berlin

These investigators will look “at the function of β2 adrenergic receptor autoantibodies in ME/CFS.

They will identify patients with these autoantibodies and those without, and compare a wide range of clinical and immunological measures between the two groups. These measures will include clinical symptoms such as fatigue, physical function and signs of autonomic dysfunction, as well as blood vessel function, immune marker expression, and the proliferation of T and B cells.”

Read more here.


Two dimensional sequencing and machine learning to maximise genetic marker detection, Brett Lidbury, Australian National University

This funding will allow Lidbury’s group “to acquire additional genetic data using DNA pooling. They will apply two dimensional DNA sequencing to attempt to identify ME/CFS-associated genetic changes across the entire genome in a clinically well-defined group of 100 patients and up to 40 controls.”

Read more here.


Continued in the next post.

 

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.


Other on-going projects

Prof Duncan Baird, Cardiff Uni

"This project hopes to provide an in-depth understanding of cellular ageing of immune cells in patients with ME/CFS and whether this may impact on the pathology of this condition. Providing an understanding of these processes and the technologies to monitor them may in turn lead to prognostic tools and potential therapeutic interventions."

Source

I recently had an email exchange with Prof Baird where he confirmed that this is a pilot project which has no specific funding, although the UK ME/CFS Biobank were able to release the samples without charge to him due to donations from the public to them.

*****
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

ETA: Details on Prof Baird's study.

 

Personal postscript.


So my opinion is that we, the patients, need to fund research.

It might seem to be not right or fair, but we need to fund research ourselves. However, this is nothing new for the UK.

It is reported here, https://www.amrc.org.uk/Pages/Category/summary, by the Association of Medical Research Charities, that in 2017, their members spent on medical research into all illnesses a total of £1.6bn, which it took the combined total from both the NIHR and MRC, of £1.8bn, to beat.

We therefore, collectively, need to donate to, and/or fundraise for, our charity of choice, and help them support researchers to build up that knowledge base, to start unravelling what ME/CFS actually is.

Alternatively, if your preferred researcher has set up ways to be supported through direct donations, send them what money you can, and encourage your family and friends to donate as well. Currently, however, I’m not aware of any UK based researchers who have arranged this though.

Links to charity donation pages:

Action for ME - https://www.actionforme.org.uk/make-a-difference/donate/donate-online/

Invest in ME - http://www.investinme.org/fundraising.shtml

ME Association - https://www.justgiving.com/campaigns/charity/meassociation/ramsayresearchfund

ME Research UK - http://www.meresearch.org.uk/support-us/online-donation/

And my personal addition to the list, the UK ME/CFS Biobank - https://cureme.lshtm.ac.uk/donate-to-cureme/

In 2018, in his blog, Simon McGrath estimated that around £500,000 was spent annually by the various ME/CFS charities in the UK on research and I don’t see anything that would have drastically changed this amount.

For the medium- to long-term, we need to build pressure on the political system, to demonstrate to our supposed representatives that the decades of neglect is not something that many of the constituents are happy with, and that it needs to change.

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.

So get writing to your MP and/or get involved with the advocacy group/charity of your choice. Or if those things are beyond you, it's still possible to support advocacy efforts, particularly if you are on social media, by liking and sharing anything you agree with.

Donate and advocate, it’s the only way that things will change.

 

This is terrific, @Andy! It’s so great to see all the current projects listed, and to see that how much of the heavy lifting the charities are doing.

 

Thanks Simone. Yes, I think it's an important point, about how, compared to the overall investment into ME research, the charities are doing the lions share, and obviously they can only do that with money donated to them.

 

Very useful thread Andy, thank you

 

Thanks for this @Andy

If we ever (not likely but one can hope and dream) win lottery or come into money we plan to donate a large sum to one or two ME research charities - only thing is we’d not know which are the best to invest in?

It’d be good if a cash injection to one helped them all.

I often think of a top footballers monthly earnings and wish one of them would donate to ME Research.

 

Great work, Andy – thank you! This is very interesting and also a fabulous resource. Pity the scale of research in the UK is still so small. You’re right that we need to take action.

 

Definitely.

 

Well, like so many things, best is subjective. One of the things that I hoped that this thread would help with is us all gaining an appreciation of what, collectively, the charities are doing in regards to research, and then what each is doing individually.

So I would suggest that, if your desire is for your lottery dream millions to go to research, then Invest in ME, ME Association and ME Research UK are the ones to look at. But if you wanted to focus your donations then I would suggest looking at what research those three are funding and deciding if you think they have a strategy that you approve of.

Personally, in the hypothetical situation where I had millions at my disposal, I would give funds to all three, as well as the CureME/Biobank team, as my view is that we need to establish a wide base of research.

And I would also look to donate internationally as well, but that isn't the subject of this thread.

I think a cash injection to any of them, broadly speaking, would help all as it would help to establish ME research as a worthwhile area for researchers to be involved in - as a general principle, better to donate to a charity of your choice than not donate at all.

 

Thanks @Andy

This thread will be a good resource to weigh things up. Food for thought, I get so overwhelmed and confused by all the different avenues being researched - though am glad on them all.

 

Ooof. The contrast between public and private research should be a punch of embarrassment in the gut of everyone involved in the public side. One's a clown car, the other is actual research by serious researchers.

It's like a two-stage festival where one side plays real bands while the other stage plays harpsichord-only renditions of less popular bands with random people selected simply because they look-alike the original band, in a different key and at the wrong tempo.

Incredible waste of public funds. So bad they should be reimbursed with apologies and letters of resignation. Just shameful.

 

Great work Andy! Good to have this in one place!

I would like to add that the US NIH is the major funder of the ME/CFS Biobank, has provided funding every year since 2013, and they also pay for sample collection and storage according to the project information. Funding also from 3 UK charities (ME Association is one) and private donors as well.
https://twitter.com/user/status/1107942290654408704

NIH FY2018 funding was $539,972. I imagine this dwarfs the charity and private funding provided to the ME/CFS biobank.
NIH Funding History Detail
https://projectreporter.nih.gov/project_info_description.cfm?aid=9272477&icde=31258613
NIH Project Information
https://projectreporter.nih.gov/project_info_description.cfm?aid=9272477&icde=31258613
NIH funding of the ME/CFS Biobank has facilitated 12 publications
https://projectreporter.nih.gov/project_info_results.cfm?aid=9272477&icde=31258613

EDIT: I know this thread is about UK funding, but I thought it was important to clarify the ME/CFS Biobank funding. Like Andy, I believe the Biobank is really important. It is soooo hard, expensive, and time consuming, for researchers to access well qualified patient samples. This resource lowers the entry barriers for researchers wanting to study this disease.

EDIT2: The good news is that after 5 years of funding the NIH renewed the ME/CFS Biobank project until 2021. Details of renewal here
https://projectreporter.nih.gov/project_info_description.cfm?aid=9543300&icde=31258613

 

Do you know anything about this project @Andy @Jonathan Edwards ? According to the NIH site project is due end this month, although funding was only received in 2016 and 2017 - $272,912 total? It's by Jackie Cliff of the LONDON SCH/HYGIENE & TROPICAL MEDICINE. No publications are shown.

DROPLET DIGITAL PCR FOR EVALUATION OF ASSOCIATIONS BETWEEN HUMAN HERPESVIRUS INFECTION AND MYALGIC ENCEPHALOMYELITIS/CHRONIC FATIGUE SYNDROME(ME/CFS)
https://projectreporter.nih.gov/project_info_details.cfm?aid=9326134&icde=31258613

 

Yes, I was aware of the NIH funding to them, my only reason for not mentioning it was my decision to focus on UK sources of funding. Additionally, I believe I'm right in saying that it doesn't pay the running costs, which is why the ME Association currently do so. AfME certainly funded at the start of the Biobank project, I don't believe they do now, and, while ME Research UK are still involved with the Biobank Steering Group committee, I don't believe they currently provide direct funding to them - although it's worth noting that several of their funded projects involve Biobank samples, so some of their money does go to the Biobank.

 

I know no more than the details shown but my assumption would be that it's one of the publications that they hinted at in their Q&A with me. (I'm sure you've seen the Q&A, just thought I'd take the opportunity to link it for anybody who hasn't.)

 

Thank you @Andy for gathering this all in one place.

As I approached my second donation as a Biobank participant, I suddenly felt the need to try to help even more. During the three year term of the study that I am on, I will reach a Big Birthday and, so will only be ‘allowed’ to donate on 5 instead of 6 occasions. The reasons behind this have been fully explained to me and I am happy with that.

I am just really pleased that I have been able to take part in this study and do my bit for my friends in the local support group and for my virtual, online friends who are unable to participate at all.

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.

I think we all contribute what we can to the fundraisers that we see online, to the marathons (well done @Mike Harley with all his so far!), the afternoon tea, cyclists and canoeists. It may be a couple of pounds or a lot more, but, I think our community is well aware that we have to fund a lot ourselves whilst we are still persuading the policitical powers that they should stick their hands in their Government pockets too.

 

My understanding is that the NIH grant monies are paying for the two research studies (one is an extension, for a further three years, of a study originally funded by NIH for 3 years). The ME Association, through the Ramsay Research Fund, covers all the administration costs of the Biobank.

 

I know we've had a couple of threads on this topic already but I have to say that I'm not sure this is the case.

There are multiple reasons for me gathering this information together, but one reason was to be able to present evidence of what the research situation is, in the hopes that those patients who are able to but don't donate might be inspired to do so.

While it might, unavoidably perhaps, come across as preaching to the converted, I'm hoping that the information, compiled in one place, will perhaps reach further to those yet-to-be-converted. And obviously those who are unable to donate shouldn't, that should fall to those of us who can.

 

I found the details

Source : https://www.meassociation.org.uk/research/research-projects/