United Kingdom: ME Association news

Jonathan Edwards said:
I realise reading this how out of touch the MEA information machine is for a charity managing millions of pounds of patients' money.

No, we do not have good evidence of anything wrong with mitochondria in ME/CFS and I am not aware of any data showing things are 'similar' in Long Covid (to what?). The existence of ten thousand papers does not mean they provide any reliable knowledge.

Talking down to people might have been acceptable twenty years ago but the MEA has to bring itself into the new century and show some sort of critical scientific attitude. I have no idea who peer reviews their grants. Does anybody? They have made some sensible decisions in the past but the process seems pretty opaque.
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I agree that there seems to be a problem with the MEA processes used to allocate money for research. Certainly, there is a problem with the transparency of its processes, and there have been some problems with its decision-making on this front lately.

There may be a good case for a mitochondria study though. It has been proposed that mitochondria have different features in ME/CFS, e.g that there is fission and so mitochondria become smaller, that ME/CFS mitochondria in stressed cells perform more poorly that healthy mitochondria, and that the application of ME/CFS sera can affect healthy mitochondria. For sure, the evidence is weak. It is possible that some good researchers have some ME/CFS and LC ME/CFS serum to hand and could easily confirm or disprove such ideas. If the study didn't cost much, but could be illuminating, and was being done by researchers that you had faith in, there might be a case for supporting it.

I don't know what the MEA is considering, but I'm just saying that I don't think we have enough information to know that a mitochondria study is not worthy. Sometimes, I think it is a valid use of patient funds to undertake studies that are likely to prove that some popular ideas/treatments are wrong, in order to redirect investigations and care to more useful areas.

Definitely though, I'd like to see all our patient charities that are funding research have clear and transparent processes for research selection, with accountability. In most cases, I think that involves a named research selection panel with a good level of well-qualified patient representation.
 
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Dolphin said:
I'm less excited by the talk of £1,000,000 going on an 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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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
 
Dolphin said:
30 studies costing £33,000
or
20 studies costing £50,000
or
10 costing £100,000
could be funded with that £1 million.
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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.
 
Sasha said:
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.
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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.
 
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Dolphin said:
Yeah, but “wasting” £30,000 is not as much of a problem as wasting £1 million.
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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.

£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.
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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?)

There have been lots of epidemiological studies already. It is accepted now a lot of people have it: it’s not like the 1990s.
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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.
 
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 thought the MEA research fund was intended for biomedical studies. Epidemiology seems a poor choice, especially now with such variation likely depending which Long Covid people being included. And how the clinical toolkit one got funded beats me.
I'd also like to know why they are planning to fund a large drug trial, when there's no known promising drug treatment to trial.
 
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.

Hutan said:
I'd like to see all our patient charities that are funding research have clear and transparent processes for research selection, with accountability. In most cases, I think that involves a named research selection panel with a good level of well-qualified patient representation.
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Sasha said:
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.
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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
- technophobe works very well, most apt in fact, and I did infer an underlying phobia of biomedical measurement in evidence

- i don't do autocorrect, it bounces my eyes around too much

- i did mean xenophobe due to the blatant refusal to include for diversity

- very glad to hear I read the "working arm" wrong and its just means an active operative name not a working arm, good thing you are on the watch to contain all these trails
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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.
 
Jonathan Edwards said:
I realise reading this how out of touch the MEA information machine is for a charity managing millions of pounds of patients' money.

No, we do not have good evidence of anything wrong with mitochondria in ME/CFS and I am not aware of any data showing things are 'similar' in Long Covid (to what?). The existence of ten thousand papers does not mean they provide any reliable knowledge.

Talking down to people might have been acceptable twenty years ago but the MEA has to bring itself into the new century and show some sort of critical scientific attitude. I have no idea who peer reviews their grants. Does anybody? They have made some sensible decisions in the past but the process seems pretty opaque.
Click to expand...
The post by CS clearly stated that CS had taken part in similar trials, CS is the authority on all things ME research
 
Dolphin said:
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.
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To be honest, with all the current admin overheads, and insistence that ethical, PIP, R&D and whatever boxes are ticked before you even write a grant you don't get much change from £1M for the tiniest of real studies. £100,000 would just offset some costs for a pilot project you have already done on money 'borrowed' from another grant. It would to fund a project de novo.

MEA have been very good at providing small stop gap sums, which are very valuable at a gestation stage. But things are now at a stage where serious choices need to be made about substantive projects. £2M is probably the starting sum for one of those.
 
Sasha said:
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?
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It shouldn't they should put together a review panel and assessment panel. Charles could be a good chair but multiple opinions are needed.
 
Sasha said:
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.
Click to expand...
Dolphin said:
30 studies costing £33,000
or
20 studies costing £50,000
or
10 costing £100,000
could be funded with that £1 million.
Click to expand...

The ME charities are never going to be able to fully fund the size of study necessary so one thing they can do is provide money for initial experimentation to get to the research to the point where MRC grants can be applied for. This seems to be something that ME Research UK try to do (although I've not looked recently). It feels like charities need to be strategic in how very limited research money is spent to aid building research capacity and generating hypotheses that will help gain more funding (and/or the interest of a wider community of researchers).
 
Charles has issued clarification on the research that the ME Association may be funding:

https://www.facebook.com/meassociat...HfzNJN2hMiuQvRp2iZH87ZEvF4iR1CeKjyrqGTKPJrkfl

Tom Kindlon's ME CFS & related page: News, Research and more
Hi Tom

To clarify

We are currently looking at two new research proposals - the total cost of which would be over £1 million

The epidemiology study, which is not really about prevalence, is nowhere near £1 million

The other research, which is biomedical, is around £1 million

As you infer, the Ramsay Research Fund has a remit to fund biomedical research into cause and treatment of ME/CFS - which it does

We are, however, able to dip into general funds to occasionally fund research outside this remit. Two examples here would be the research we have funded which has analysed the safety and efficacy of CBT and GET and the analysis at the University of Exeter of results from the most recent patient evidence - which has now been submitted for publication

Hope this clears up any confusion

Charles
 
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