United Kingdom: ME Association news

I'm less excited by the talk of £1,000,000 going on a epidemiological study. I don't find it exciting to know exactly how many people have the condition which I'm guessing is what they're going to look at. Especially as it's unlikely to be a very precise figure with all the biases that can be involved in sampling and the lack of a solid and widely used biomarker.
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ME Association

1. Research into causation

All the basic running costs of the ME Biobank, which is part of the UCL Biobank at the Royal Free Hospital in London. The ME Biobank supplies blood samples and anonymised clinical data from people with ME/CFS to research groups in the UK and abroad. I chair the ME Biobank Steering Group

Post mortem research in collaboration with the Manchester Brain Bank - which can only proceed if people who want to donate to this type of research sign a Statement of Intent to do so

On going research into mitochondrial dysfunction and metabolomics at the University of Oxford, including a new PhD position in 2025

Funding to physios for ME, including a pilot study on lactate levels in people with ME/CFS - University of Liverpool - Professor Nicola Clague Baker et al

Under consideration - research into the underlying physiological cause of post exertion malaise

2. Research into diagnostic biomarkers - two separate studies
University of Surrey - Prof Robert Dorey
University of Oxford - Dr Karl Morten

3. Research into management and treatment

Management of dysautonomia - orthostatic intolerance and PoTS at University of Leeds - Prof Manoj Sivan

ME/CFS in pregnancy - University of Newcastle - Dr Emma Slack et al

Development of a clinical assessment toolkit for use in specialist referral services - University of Manchester - Prof Sarah Tyson et al

Clinical trial of a drug treatment - protocol agreed and contractual arrangements in progress

Preparation of academic paper on results from the Count ME in patient evidence survey - University of Essex

We are also discussing the possibility of funding a major new research study that will involve both Long Covid and ME/CFS and an epidemiological study - the total cost of which would be in excess of £1 million

Before making any further major funding decisions we want to see whether there are any major developments in cause and management of Long Covid that could be applied to ME/CFS. Sadly, despite pouring huge amounts of money into Long Covid there haven't been any breakthroughs relating to either cause or treatment so far

We also want to see whether there are any significant findings from the DeCodeME study that provide new ideas for research into biomarker development or causation

Further information on the research we are funding can be found on the MEA website news section and the Ramsay Research Fund section.
RRF website
https://meassociation.org.uk/ramsay-research/
The ME Biobank has a separate website
https://meassociation.org.uk/2024/12/end-of-year-updates-from-cure-me
Ends

 

From the MEA's post-AGM statement:

I have a huge amount of respect for the work that Dr Shepherd has done but surely this doesn't mean that he's the sole reviewer for all the research proposals? Perhaps this means that he's in charge of it and other people are doing the reviewing?

 

There is a "How to apply for a research grant" section on this page:

It doesn't seem to give any further details of the formal grant application & peer review processes. And this is the link to their announcements of funded research projects:

https://meassociation.org.uk/category/ramsay-research-fund/

 

Assessment and monitoring of grants could be about making sure a project is on target and that the team is reporting what it agreed to (not the end findings, just the stages of the process) before payment of grant instalments is made.

It might be quite light touch if projects proceed as expected, but it could be more involved if, for instance, a member of a team left their job and had to be replaced (which might mean the timetable was adjusted), or the research turned up an unforeseen but valuable opportunity to pursue something that wasn't in the original proposal.

I hope it doesn't have the same meaning in the assessment of initial grant proposals, because one person really isn't enough.

[Edited slightly to tidy up]

 

Well, I never thought I'd find myself agreeing with Mr Barton. I wonder if Colin's comment will be hidden?

 

30 studies costing £33,000
or
20 studies costing £50,000
or
10 costing £100,000
could be funded with that £1 million.

 

All i know is an ethics committee screens grant proposals in some way maybe similar to how a journal screens for publication afterwards, and recently I gathered that maybe the ethics committee also screen the methodology. purpose and productivity etc, I had thought they only vetted and certified if ethical. I think there may be are far more factors to screen for in a proposal, than in the published results

I understand that the reserve fund is getting very big, maybe from legacies. but also its said to be small compared to the costs of reseaand rch usually available. Either way I don't see it working well to farm out an ethic committee. I would have thought its usually done in-house for such a busy investment portfolio, and for such a hi-powered thorough vetting, with such specislised ever-rapidly-updating knowlege, too

But maybe thats not affordable on this scale, its just how i picture a university vetting stuff. with all those experts on hand

 

I do question whether epidemiology needs to take precedence before anyone can even agree widely on how whose what is measurable and measured, when and why and .... please complete

 

I don't think it's the number of studies that's important so much as the likelihood of useful results. I'd be happy for the MEA to drop £1m on a study that was worth it. The key thing is to prioritise, based on our best understanding of the science - and we need good scientists reviewing those proposals as well as carrying them out.

 

Yeah, but “wasting” £30,000 is not as much of a problem as wasting £1 million.
£1 million is relatively a lot in our field. Lots of pilot studies for different theories could be tested for £1 million and if they had some evidence, they would be in a stronger position to get money out of the MRC, NIH, etc.

You mention priorities: there have been lots of epidemiological studies already. It is accepted now a lot of people have it: it’s not like the 1990s.

 

But those aren't the choices, wasting small or wasting big! We don't have to waste any money, in the sense of choosing as well as we can given the information we've got.

The field is awash with small, underpowered studies that have got us nowhere. Even when they come up with positive results, they don't seem to get replicated. Having a small study with a weak signal doesn't seem to put us in a good position to get money out of the big UK funders. I think we've already seen this strategy failing to work, for decades. (Although I'm happy to be proved wrong - can you think of many examples where the big UK funders have coughed up big for positive results in an ME/CFS pilot study?)

Like you, I'm not a fan of this as a priority, although I note that @Chris Ponting had on his list of research priorities, '(iii) studies investigating ME/CFS's true prevalence & incidence rates (in the UK & beyond, and in seldom-included communities)' so I'm open to argument! But I'd be far more interested in seeing studies that might uncover a mechanism. Uncovering the scale of suffering doesn't seem to have helped us so far.

 

To state the obvious, MEA are not legally obliged to retain the minutes for Nov 2014 past Nov 2024 (ten years). But they would be well advised to search through their electronic and physical filing cabinets for a copy of the 2014 AGM minutes.

Without the minutes, the MEA cannot evidence their assertion of the wording of the AoA on the vital matter of payments to Directors. None of the public copies of the AoA available prior to Dec 2024 support their view.

If the minutes cannot be produced then surely there is a basis for complaint to the CC as we are in “dog ate my Articles of Association” territory.

 

The MRC seems to have has a bias in the past towards biomedical ME/CFS research but that doesn’t mean things may not change in the future. Lots of ME/CFS researchers in the US have got NIH funding using this method (pilot data).

The opportunity costs of giving £1 million to an epidemiological study need to be looked at, which is what I have been trying to do. To attract biomedical researchers to the field and keep them in the field private money is important.

Academics can like all sorts of research. There are academics doing all sorts of arcane research (overall). Just because there could be academics who might approve the funding £1 million on an epidemiological study doesn’t mean we need to agree.

 

I am sure they can all remember the reasons they had and gave for altering the articles - the reasons that convinced them and then the Members, surely they cannot say they lost the minutes and have no idea why they would want to change articles in 2014, by AGM i.e a significant change - not just pretty them up

If they can't recall then they are all too unmoored to know and do the business but if they can't think up a rational reason then its no wonder they did not just say look, this is why we made that change .... mind you they are in very good company since no-one can think up any reason for the change they say they made

 

and i saw nothing looking like an ethics contract in accounts as given, and I don't understand why income and expenditure cannot be itemised anywhere

Also i heard that MEA gave assurance that they make sure everyone in the field knows their funding is available and accessible, but never get enough bites however hard they tried,

- its also said all over that researchers are deterred by their colleagues if not by us

- and although i can't evaluate the his research, someone said that Danny Altmann wasn't getting a look in and needed funding, is there a reason for this ?

- its all too dim and shadowy, we are not being charitably educated as patients

in general I find that where there is no transparency its distinctly fishy although there can be legitimate reasons for trade secrecy on specifics

In this case the obscured emergent problem look like its in the MEA prodedures for making decisions, also allocating and sub-sub-sub contracting (research grants etc) - their primary contract is from their Members and some donors, the rest is sub-contracting.

I first learnt about this matter of research design to produce useful results, and how - from a summary given on S4ME summarising the 2024 Helsinki update of ethics for medical research - which the MEA simply cannot ignore. There is some small leeway eg knowledge derived must be probably..... (I am not sure of the phrase)


2025 rocks @bobbler and @Dx Revision Watch

Spoiler: Apparently the ME Society grew bigger since 2018

from: https://mooreks.co.uk/insights/audit-exemption-and-how-to-take-it/


- the Society is no longer "small" because it grew "full" bigger from 2019-2023:

Total exemption full accounts: what does it mean?
Every year, companies have to prepare statutory accounts and file a version with Companies House. The type of accounts you must file depends on the size and type of the company.

A company that is listed as ‘Total Exemption Full Accounts’ is exempt from an audit but has to file full accounts, including the director’s report. Some companies may not have to submit a full set of accounts depending on their size. They would be listed on Companies House as ‘Total Exemption Small Accounts’.

1. Audit exemption for dormant companies
A dormant company is one that hasn’t performed any significant accounting transactions during the reporting period, so no audit is required.

 

Some one up thread pointed out that minutes of a meeting don’t formally exist as minutes rather than a draft until they are adopted, presumably at a subsequent meeting. So it could be argued that the ten years are not yet up.

 

The post by CS clearly stated that CS had taken part in similar trials, CS is the authority on all things ME research

 

I’ve just clicked through and it is no longer there but is replaced by two comments from other people - one of which is asking when there will be a new chairman