United Kingdom: ME Association news

MrMagoo said:
I find it very odd to see a card representing a woman of colour. That’s the first reference to people of colour I’ve ever seen from the MEA (I do look).

That’s an awful lot of hair to look after.

Also, “seasons greetings, don’t forget you’ll be feeling rubbish” just do a non-denominational winter scene.
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I wonder if they’ve noticed the contrast between the two images (the black woman isn’t a photo - do they have many images of /patients of various backgrounds and diversities in touch with the MEA? )
 
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It seems particularly insensitive to send out a Christmas card featuring a photo of someone many pwME have just complained about and asked to stand down on the grounds of writing insulting articles containing bad advice. And we can't even usefully complain about it, as Neil Riley has also just published a flippant article about himself being the complaints department. The MEA has taken leave of its collective senses.
 
https://meassociation.org.uk/2024/1...of-association/?utm_source=rss&utm_medium=rss

MEA Statement Regarding Articles of Association
December 17, 2024

The trustees of The ME Association have recently been accused of illegal payments and dishonesty. These accusations have been made on social media and via other communications methods including emails.

These are serious accusations and are wrong.

The payments were made in respect of two contracts. Those contracts were for professional services provided by two trustees. This happens regularly with charities who require specialised skills and is not related to the work those Trustees undertake as Trustees (Trustees decide how the Charity is run) which is unpaid.

The Charity Commission permits such arrangements provided certain strict conditions are met. One of these is that the Articles of Association do not forbid such payments. The current version of the Articles, as registered with Companies House in 2014, does not forbid such payments.

The current Articles are available for everyone to see. They permit payments for services-see “Allowed Payments”-section 28 (a), which lists a number of strict requirements which have all been complied with.

A review of the original Articles was carried out in 2013. A number of amendments were made at the time to reflect the changes in the Charity Commissions Model Articles and comply with Sections 185 and 186 of the Charities Act 2011.

The version of the Articles, which has previously appeared on our website, is not the 2014 version. The correct 2014 version of the Articles has now been uploaded. Human error can never be eliminated but we have put in operation a process to ensure this does not happen again.

The Charity Commission accepts the current 2014 version of the Articles. Companies House carries the full version.

Download 2014 Articles of Association
Policies and Documents Page – see Section D Governance

The MEA repeats that no illegal payments have been made to Trustees. Any accusations of dishonesty are totally wrong. Any repeat or reposting of such allegations by anyone that the charity has not complied with its legal obligations will be actionable.


Neil Riley,
Chairman of Trustees
The ME Association

Post copied and announcement discussed here: https://www.s4me.info/threads/unite...n-governance-issues.42093/page-34#post-579038
 
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Just got a Christmas email to members from the MEA.

I have not looked at it properly but it has a prominent section asking people to sign our petition for the withdrawal of Larun et al 2019, though presumably it should now be Larun 2024.
 
Peter Trewhitt said:
Just got a Christmas email to members from the MEA.

I have not looked at it properly but it has a prominent section asking people to sign our petition for the withdrawal of Larun et al 2019, though presumably it should now be Larun 2024.
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Is using a term saying ‘and it’s isomer’ or ‘copy’ now ’labelled as larun 2024’ a more important underlining

I think they’ll try and use it against us if they can make it sound like we are demanding two be taken down we we don’t have a catchy way of getting across what they’ve done here and what this 2024 thing is?
 
From MEA Facebook page, think the bit in bold is new?

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Long Covid and mitochondrial dysfunction

New research from Oxford provides further evidence of mitochondrial dysfunction in Long Covid

As we already know, there is similar and long-standing evidence of mitochondrial dysfunction in ME/CFS

This dates back to the early 1980s where it also involved a technique called nuclear magnetic spectroscopy

The first ME/CFS research involved my own skeletal
muscle and was carried out in Oxford by Professor George Radda and colleagues. We published the results - which included early and excessive lactic acidosis in the muscles during exercise - in The Lancet in 1984

The MEA Ramsay Research Fund has been funding Dr Karl Morten and colleagues to carry out further research into mitochondrial dysfunction and muscle energy metabolism (the way in which mitochondria create energy at a cellular level) for the past few years

We are currently discussing funding a new muscle and mitochondrial function study and hope to make an announcement in January

Dr Charles Shepherd
Hon Medical Adviser MEA

Link to the Long Covid research

https://pubs.rsna.org/doi/full/10.1148/radiol.233173

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Dolphin said:
Long Covid and mitochondrial dysfunction
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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.
 
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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Of all of the issues with the MEA, I think this one dwarfs the rest. The MEA has £3.6m in assets, while ME/CFS research is starved of funds. We can't afford to have the MEA waste money.
 
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
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Sasha said:
Of all of the issues with the MEA, I think this one dwarfs the rest. The MEA has £3.6m in assets, while ME/CFS research is starved of funds. We can't afford to have the MEA waste money.
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From the MEA's post-AGM statement:

MEA said:
The MEA’s Ramsay Research Fund (RRF) is where donations are ring fenced for biomedical research into the cause and treatment of ME/CFS.
This means that all money raised goes to research. There are no administrative costs to pay as all the assessment and monitoring is carried out by Dr Charles Shepherd and contractual arrangements are overseen by two of our trustees, Mike Mitchell and Neil Riley.
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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?
 
Sasha said:
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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There is a "How to apply for a research grant" section on this page:
1. We would encourage any researcher to first contact Dr Charles Shepherd, Trustee and Hon. Medical Adviser to the ME Association (via admin@meassociation.org.uk) for an initial informal discussion.
2. If you would then like to proceed and submit a grant application, please do so by providing some preliminary information on the research proposition form. The proposal will then be discussed by Trustees, who aim to respond within 4 weeks of receipt.
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3. The next stage in the process will require submission of a formal grant application, but this should not be completed until your proposal has received approval.
4. Grant decisions are based on the guidelines produced by the Association of Medical Research Charities and we will normally include both an internal and external peer review of all formal grant applications.
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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/
 
Sasha said:
Perhaps this means that he's in charge of it and other people are doing the reviewing?
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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]
 
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