In November and December last year, major concerns were raised around the performance of the ME Association. Key issues included:
- The charity had been hoarding significant funds, sitting on piles of cash while researchers were starved of funding.
- The annual accounts showed that the charity was paying its trustees. This conflicts with the supervision and oversight role of trustees.
- The ME Association's positions appeared misaligned with the ME community - an article in ME Essentials magazine drove a petition calling for the Chair’s resignation. The AGM had been poorly publicised and people with severe ME felt ignored and misunderstood.
- The leadership appeared stagnant - the organisation was dominated by trustees who had been in post for significantly over the 9 year limit recommended by many charity sector bodies.
We drew attention to these issues across social media with the intention of using the December 2024 AGM to push for change.
In the UK, more than half of health research funding comes through the charity sector, so the ME Association's performance is a key issue for all those who want change for people with ME.
We should also stress that the top of the ME Association’s ‘Governance ladder’ is the ME Association membership and the community of people with ME. We do have a responsibility to scrutinise the ME Association’s performance, and we hold some responsibility when it fails.
The ME Association has just published its annual report for 2024. I encourage you to read it.
The majority of the period covered by the Annual Report was pre-2024 AGM, so even if all objectives of our complaints were delivered, that change may not manifest in the 2024 accounts.
The Annual Report and Account for 2024 can be found on Companies House > Filing History > “Full Accounts made up to 31 December 2024”.
Link Here
We do know that some positive change has happened:
- The former chair - Neil Riley - departed in March 2025,
- The organisation commissioned a governance review which was undertaken by an independent NCVO-linked consultancy.
Here is an overview of other key points:
Section: Objectives and Benefits:
Parts of the Annual Report were previously ‘copy-pasted’ for the last few years: the “Objectives and activities” section was mostly the same between 2019 and 2023 - a bad sign. So it is a welcome change to see this has been updated to remove the previous anti-CEO posturing (potentially targeting Action for ME?), and now focusses on the scale of the problem we face. I welcome this more urgent tone. The section notes:
- ME/CFS and Long Covid are “a real health crisis” - yes.
- “ME/CFS can lead to a long-term disability and a lower quality of life than Multiple Sclerosis or Cancer” - yes.
- “There are no effective drug treatments” - again, yes.
The report then outlines their approach to confronting the crisis: “offering a safe and welcoming community”, “provide reliable information”, “provide support with ME Connect”, “fund medical research”, “arrange training for healthcare professionals” etc.
Each of these activities is measurable, so I would like to see metrics against them: how many people accessed ME-Association information or contacted ME Connect? What was the total value of research funded? How many healthcare professionals received training? We want to see these metrics improve year-on-year, and we want to see their impact: e.g. what percentage of healthcare professionals might now be considered to give “good” or “excellent” support for people with ME?
But in spite of shortcomings, I am buoyed by this change - it shows better recognition of the problem, which is a vital to confronting it. While I believe change should be rapid, I suspect that the existing trustee team is not strong enough to deliver that so fast (see later section on trustees), and some areas of change do need more time and consideration.
Strategic Report: Achievements and Performance:
From 2019 to 2023, this section could be summarised as “more of the same”. It has now been reinvigorated. Good.
The section includes more details of research the ME Association is, or is considering, funding into causation, biomarkers, management and treatment. It includes social care and ME connect programmes. Again, this is good.
The report outlines actions the ME Association says it is taking to improve operations, governance, transparency, fundraising and other factors. These appear positive, however the outcomes are yet to be seen.
This section also includes 2 bullet points on Neil Riley’s departure and replacement by David Allen.
Financial review:
I am glad to see there has been new thinking going into this section, perhaps driven by awareness that it is being scrutinised.
Total income increased by £100K compared to 2023, however this was driven by legacies - “regular” donations decreased.
As legacies are a less stable income source than donations from the living (a charity cannot… legally... anticipate when a legacy donation might arrive or accelerate its arrival) this is not good news, even if the legacy income is very welcome. For regular donations to decrease while awareness of the disease and the number of people affected has increased so sharply raises major concerns about strategy and performance.
The report states that total reserves at the end of 2024 were £3.86 million (against an annual expenditure of £865 thousand pounds). Crudely calculated, this means that at the end of 2024 the ME Association had 4.5 years of cash in the bank and could continue operating for that period without a penny of new donations. That is not good news - it means that the organisation could have done a lot more to deliver its objectives, but chose not to. You could also say that a pound donated to the ME Association at the end of 2024 would not make an impact until mid-2029. That was shameful performance, and one wonders how much better the lives of people with ME may currently be had the ME Association spent those donations on programmes to support its objectives.
However there are signs of change, and these are to be welcomed. The organisation designated £1.2 million towards a research project. Designated funds are a way of saying “we have plans for this cash, but we haven’t finalised the deal yet". It shows that the money is making its way towards its objectives, which is positive. If this project is funded, it will be the largest investment in research the ME Association has ever made.
Side note: I don’t like their calculation of reserves as it includes illiquid assets: if the ME Association is in a financial pinch, it cannot expect to sell-off its stock of Christmas cards and its office to pay costs. I would exclude fixed assets and inventory, making total reserves £3,75 million. Of that, £10K is allocated to office repairs, £550K is to be held as a ‘buffer’ for ongoing operating costs, and £1.2 million is earmarked for a research project. By this calculation the MEA had £2.05 million in “spare cash” at the end of 2024, which is still way too much, but is better than the previous year.
Side note 2: the ME-Association has a policy of holding 12 months’ operating costs in reserve. Most charities operate with around 6 months or less. I feel this policy should be reviewed to free up cash.
Side note 3: The ME-Association’s decision to spend the £1.2 million out of general funds rather than the restricted ‘Ramsey Research Fund’ makes no sense to me. It reduces flexibility.
The Accounts:
The real substance of the organisation’s performance is to be found in this section. I’ll not say more about reserves, but here are some additional points:
- Overall income has increased, but this increase comes from legacy donations (gifts in wills) and investment income (reserves invested in shares and bonds) not ‘regular’ donations which have decreased by £47K compared to the previous year. This is a problem as legacy donations are unstable (they cannot be relied upon) and income from investments has only arisen because their reserves are too high. This size of charity should not have so much invested in financial markets - it should be invested in driving its objectives.
- Given that recognition of ME and the numbers of people living with it have dramatically increased, we should be seeing better income growth (this applies to all ME charities). The lack of engagement here is real problem.
- Subscriptions are mildly up at ~£90K, which suggests they have nearly 5,000 members, or around 1.25% of the ME patient population if one uses the 400,000 lower-limit figure.
- Gift-Aid income is not reported. It may be that this is included in the donations, but most charities do report Gift Aid separately. One hopes Gift Aid is being claimed.
- Fundraising spend is still low at £18,600. If we are to raise the millions required to pay for all the medical research, care and support people with ME need, this appears far too low.
- Actual grants made during 2024 totalled only £165K. Given the Ramsey Research Fund holds £825K, this also appears too low. Is there really nowhere this could be spent?
- The number of employees has increased, hopefully increasing capacity and capability. But at £25,000 average cost, one wonders if they are paying enough to attract and keep the calibre of staff this sector really needs?
- Related Party Disclosures: this is the section which declares that the ME Association paid its trustee David Allen: £22,400 “in respect of IT support, equipment and sundry supplies”, and Martine Ainsworth-Wells £29,952 "in respect of campaign work". This was the cause of complaints in 2024. I believe that paying trustees to complete work for the charity was and is inappropriate: the role of trustees is to oversee the organisation, but trustees cannot independently oversee the work they themselves have delivered. Nor does it appear that the other trustees have the professional background to oversee and evaluate such work. I cannot find any other significant charity which has paid its own trustees, and I feel this is a significant problem. It may be that this activity stopped after the AGM - let's hope so.
Fundraising & Surviving on lower reserves:
One of the many problems with the ME Association’s past financial management - sitting on piles of cash - is that it takes pressure off fundraising, and enables the organisation to become more distant from the community it serves. Put simply, why should the ME Association care if it has lost the support of the patient community - it can survive perfectly well without it! Surviving on lower reserves means that an organisation has to keep demonstrating its value to people with ME, otherwise the community will stop donating. Operating this way focusses senior attention on delivering value to the community and drives organisational effectiveness.
Trustees:
- The report says that the ME Association welcomes applications for new trustees, but Companies House records show they have failed to recruit any. Failure to recruit new trustees exacerbates the problem of the excessive tenure of the existing board.
- They say that they advertise for trustees through their magazine and social media, but how many potential trustees read that? The ME community needs expertise in campaigning, medical research, medical training, as well as core organisational capabilities (Finance, HR, legal), so this is a major issue which is holding back the organisation and people with ME.
- Over the same period, Action for ME has managed to recruit 2 new trustees, so there is interest.
Other observations:
- While I see renewed signs of life, I don’t yet see a clear strategy in the Annual Report. What are the biggest problems in ME? What are the priority objectives for change? How will those changes be delivered? What resources are needed? etc. We need to see a strategy here. This disease is too important to accept a dilettante approach
- While they recognise the big achievement of DecodeME, they did not recognise that DecodeME was an Action for ME project. I do think the time has come for the ME Association to acknowledge the other organisation in the space, and talk about how they plan to work better together (side note - I don’t think a merger is a good idea at the moment, but that’s a separate discussion). Petty squabbles do not help people with ME.
Overall Summary: I believe the Annual Report does show intention to change, but we need to see if these intentions have translated into real action, and we need to evaluate whether the action is sufficient and well enough targetted to drive the kind of change that people with ME really need. The level of (in my view) past mismanagement was astonishing and the organisation needs to show that it is resetting itself, not just talking about it.
Some questions to put to trustees at the AGM (in my view):
Finance:
- Has the £1.2 million set aside for a research project at the end of 2024 now been spent, or at least formally agreed (at the end of 2025)?
- What (approximately) are the reserves at the end of 2025?
- Given the sums still sitting in the Ramsey Research Fund (given that it is not to be used for the £1.2million project) how much has now been used? What is the plan to spend it?
- Does the charity reclaim Gift Aid? What was the value of that in 2024?
Governance:
- What additional and new action is the board taking to recruit new trustees given that existing methods have failed?
- What is the outcome of the independent governance review? What and how will this be implemented?
- Did the ME Association look for external people to deliver the IT and campaign work delivered by David Allen and Martine Ainsworth-Wells? Why was it not able to find this?
- What was the campaign work delivered by Martine Ainsworth-Wells in 2024? What was the outcome and return on this investment? What benefits has that work delivered?
- Which of the trustees has the expertise to oversee Martine’s campaign work, and assess its quality? How did the board ensure independence through this process?
- Same situation for David Allen’s IT work?
Engagement & community support:
- Why, given the huge increase in recognition and patient numbers since 2019, has membership not grown?
- How well supported is the organisation across the ME Community?
- Why have regular donations fallen?
- Given that the charity sector is the biggest funder of medical research in the UK, why is the ME Association doing so little fundraising?
Strategy:
- What are the organisation’s objectives? How does it measure these?
- How far did it progress on these during 2024 and what has been the impact on people with ME?
