ME Association's 2024 Annual Report released.

[Trish]

But surely a charity has no business paying for medical training, or developing PROMs for the NHS. If the NHS wants them it should be paying MEA to do the work—they pay everyone else. Training for medical professionals, hopefully with input from the charities, should be delivered via the usual CPD channels.

I'd rather see the charities being independent of the NHS and able to challenge NHS provision, rather than what they seem to be doing with the Tyson project and the work with ICB's where they seem to be paying for projects where they are collaborating closely with existing NHS and BACME therapists. Thus giving charity backing to perpetuating all that was wrong with the old therapist led rehab and psychobehavioural clinics.

I have no idea what sort of guidance they are giving to the ICB's in their 100,000 pilot. I hope I'm wrong and they are insisting on specialist doctor led clinics with provision for specialist nurses to do home visits for severe pwME, not pacing up courses led by therapists that claim to be NICE compliant but aren't.

 

[Kitty]

I let my subscription lapse due to the kind of issues that you point out.

Me too, and maybe that's worth saying. There might be quite a number of would-be members out there who'd rejoin if they thought MEA was actually delivering for people with ME/CFS. Or even listening to them.

 

[Trish]

Me too. I have begun to wonder whether to rejoin, but I have no confidence they would listen to a few S4ME members, when the majority of members aren't looking this closely and are content with what the MEA is doing.

 

[Dolphin]

I'd rather see the charities being independent of the NHS and able to challenge NHS provision, rather than what they seem to be doing with the Tyson project and the work with ICB's where they seem to be paying for projects where they are collaborating closely with existing NHS and BACME therapists. Thus giving charity backing to perpetuating all that was wrong with the old therapist led rehab and psychobehavioural clinics.

I have no idea what sort of guidance they are giving to the ICB's in their 100,000 pilot. I hope I'm wrong and they are insisting on specialist doctor led clinics with provision for specialist nurses to do home visits for severe pwME, not pacing up courses led by therapists that claim to be NICE compliant but aren't.

Many may be unaware but around 20 years ago, Action for ME got very close to the NHS and the setting up of the clinics. They even had a person on staff, I think her name was Maria Shortis, who was seconded from the NHS and whose full salary was paid for by the NHS as I recall. Might have been called a section 64 grant???

The buzz wording thing I think was “nothing about us, without us” but I recall many patient reps being unhappy with how Maria Shortis did things. I think it was said that it was lip service to patients’ input.

Action for ME then were meek and didn’t seem to be willing to challenge authorities of various types. I think there were too many paid staff who didn’t have a personal connection to the illness, led by the CEO Chris Clark who was a disaster (e.g. wrote a letter supporting the funding of the PACE Trial (a previous application was turned down), allowed dubious steps/changes during the trial when he was a “patient rep” on the steering committee, etc.). I heard it said that he was focused on his future career and didn’t want to be seen as someone who rocked the boat/similar. Who knows what influenced him.

 

[bobbler]

In November and December last year, major concerns were raised around the performance of the ME Association. Key issues included:

1. The charity had been hoarding significant funds, sitting on piles of cash while researchers were starved of funding.
2. The annual accounts showed that the charity was paying its trustees. This conflicts with the supervision and oversight role of trustees.
3. 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.
4. 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?

I don’t have the wording in these terms yet

But the PROm project and the governance and attitude issues that allowed it to happen, be funded without sufficient oversight or transparency but also the retorts we’ve had when concerns raised go to the heart of a big issue

Some of which comes under some of these but..

They also need to be pushed on the trustee role being transformed to be commitment and hours more in line with the norm and pwme ie less hours - so it is more accessible and is assigned based on the right skills/understanding of ME etc for the job rather than the few people who could do it that do hear about it.

It’s game playing to not have a clear out and redesign role then claim ‘but we are trying there is no interest’ from the ongoing trustees when it is such an abnormal vs other trustee positions level of committment.

I'm frustrated because it has now been a year and the main worry regarding this serious issue has been not putting them in a rush where bps people sneak in - but that really important time period feels like it has been prevaricated, whether that is deliberate or not it feels that unless this governance review genuinely is going to do this brilliantly then that is what it will feel/look like.

I don't know any of them to speak on what those who are in these positions have as any agendas and whether they want the same as most of us, to ensure that good people are in charge and avoiding bps. But if that is the case they don't appear to be waking up to the issue that they aren't in a position to keep putting it off, because at 20yrs for some trustees it will become more urgent and rushed each year and the opportunity to have had that time to avoid disaster will just go out of the window.

 

[bobbler]

I think these are all good points.
I don't have a view on the value of an LDN trial - I know people say both good and bad things about it, but I have neither view. Were it shown to be slightly helpful I would welcome it, and it would also significantly increase the value in GPs diagnosing ME (as a precursor to proscribing LDN).

But more broadly there does need to be clearer strategy behind their spending - what are their objectives, what are their focus areas, and why is any given spending the best choice in the circumstances?

I also think there is a lot of slightly boring, but necessary groundwork to be done - building up a broadly supported description of the disease, and a supported description of symptoms, and how to engage people across the disease spectrum - doing this work would improve the follow-on research, but failing to do it means researchers may be poorly aligned on what the disease actually looks like and how it manifests.

Oh and it needs to talk of succession planning for Charles

The main thing it has going for it is the info leaflets/trust based on the actual correct information on me/cfs

And it gets away with eg being sparse on being clear what research it would fund eg objectives needing to not be bps but also method-issues etc because of this assumption of ‘having good guys looking it over’ mainly because most people think of Charles when they think MEA

But does Charles get undermined?

And do we have a plan given a huge community issue is what on earth we all do when the few older experts who know about me/cfs retire etc.

The only safe way of sorting that is perhaps slowly bring thru some before it’s an urgent knee jerk if Charles has to reduce what he does suddenly etc.

 

[bobbler]

I suppose an example of where this could be valuable is the NHS website - I know the two people who wrote the current content and both are highly respected peope in the community, but the criticisms of the text are all valid.

Having wider scrutiny of the text would have been valuable in my view, but I also find it alarming that, after decades of working in this space, none of the ME charities have a really good, concise, clear and tested explanation of the disease to help non-sufferers understand it.

I think the ‘qualitative’ needs incorporating into objectives and reflecting therefore the time involved with getting these complex and nuanced things right rather than just amount of things done - as we know the checking and transparency means vastly different resource costs to do one vs the other (risk of unintended consequences if too many things or too tight timeframes are provided to 'do it right')

I also think those who donate or are fans of MEA assume they’ve got their back on the press /pr stuff - some of the goodwill is historical assuming it’s still the case whilst eg social media has changed where it is edited and people can’t just place new threads of something they are unhappy with on fb etc

And then people would assume things like the right research, the right care and direct support for patients would be there. Along with what we will always need which is really really smart pr/pres nous - that’s what transformed MEA and its lot was when (was that due to Sean ON help?) they finally started to fight back with articles etc instead of in 2019 the situation still where bps were having a field day with articles containing myths of trolling and made up ideology. And there was nothing else

I think these sorts of things need to get defined in plans (at least support for others articles and action plans being able to be operationalised fast to bad ones etc) rather than assume and rely on x person doing it but if there were staff for it then there needs to be the qualitative sim stuff to stop bad trustees over ruling even if you had good staff etc. Ie this stuff is worthless if it is just in quant ‘reply to/do x number of press things’ rather than really specifically worded support.

And that seems to circle back round to how much depends on the trust everyone has in Charles being what keeps them where they are but then not necessarily realising how extremely that is. Most others don’t know or trust the rest, so how do we write-in some of the things that historically might have not been necessary etc

 

[bobbler]

Last year’s AGM did have a lot of questions and triggered some major changes.

I would suggest putting questions to the trustees in advance by email. While you may not always get a good answer on the day, raising the question gets people thinking about perspectives and issues they may not have previously considered.

And sometimes people need to ferment on issues before they result in newer, better positions. It’s all important and valuable.

agree that it is useful if things are thought about before so that there aren't so many issues (or repeats/slightly different angles) that it ends up being such a long list that cherry-picking has to happen because the whole lot can't possibly be achieved.

it also provides the opportunity for people to notice if there is something more fundamental to be tackled that underlies a number of issues that might be brought up.

Because this stuff is actually really hard and becomes complex to think of solutions that aren't flawed or to put the finger on what the cause of an issue is.

One thing going around in my head atm is the idea that there is a research fund, but there is also the general fund. And the MEA has changed quite a bit in what it does, some just for evolution/reaction to circumstances and things like tech/needs

I'm getting either a faint memory or impression that at some point the charities have realised it was best that they perhaps don't try and cover the same turf eg all doing offering direct individual advocacy or MEA focusing on information sheets. But I don't know how official this is and its complicated by history and how important who it is that is doing it and the angle of so many things being correct that we don't map-over easily to another serious illness perhaps.

but what people might be donating because of/having in mind, might not be the same thing that many years later is chosen or the main thrust. Of course there needs to be some flexibility - and there is something particularly unique about ME in that because for example of how much gets thrown at us by those 'unfriendly' areas or well-intended developments that we seem to hear about at the last minute or are getting rushed through.

And that last line there keeps bugging me because of that issue of 'to be at the table' ends up with the issues that need to be being held fast on getting compromised, ie we still don't really seem to be allowed in or given any driving seat and if we did focus on getting a good team / the perfect team that could (whether in the MEA or across orgs) would we still just get ridden over and ignored anyway. I just don't know how we move from such a position of reactivity and firefighting at the individual level.

 

[bobbler]

But surely a charity has no business paying for medical training, or developing PROMs for the NHS. If the NHS wants them it should be paying MEA to do the work—they pay everyone else. Training for medical professionals, hopefully with input from the charities, should be delivered via the usual CPD channels.

Sort of. It is one to think on. I agree that it's an issue because with it being NHS or similar then people don't feel required to update their knowledge with it mostly and those resources just undermine anything created - even if those resources weren't compromised in themselves. But they certainly don't seem keen to bother doing it properly as we would see it without some serious nudge

I do think that they could run a campaign, and get other key organisations involved, to push for that training to be less awful.

One hurdle is the handing someone a sheet and they pretend to read it for 10secs if you are looking whilst having an 'I think I already know all about what you have attitude'

And that in itself could be a campaign - my dream would be to involve Catherine Tate in a sketch to 'gently' flag up the attitude that so many (who don't realise they are being bad when they think they 'kindly' think it is fatigue and 'they know a mate who has fatigue or even mild cfs' when they are talking to someone more severe) have of 'I don't need to bother' with us. They genuinely don't think they've got it wrong.

And of course that would need to be a case of them first finding a group of seriously good experience pwme and allies who could get the ideas together and a really strong brief before they went anywhere near any agency (where most go wrong - as it will move fast at that point, and you need to really get across the nuance to said agency first if you are going to get something taking the right angle). It probably needs to include some HCPs so the line can be walked where it is vicious enough to make those who were going to harry half-job read things to feel a bit embarrased and change their behaviour, but without the level of reaction without humour (but not humour as if it 'has all been ok so we can go back to the same and just joke about how bad it is') that it gets people off-side and they just focus on the bad patient for being ungrateful cliche.

SO making sure they put the money in those bits that perhaps outsiders might not realise with need both time and resource first. I think it is often underestimated how much time and care is needed to get things write and involve those who do have the knowledge and find those who can take the 'convert it into a piece of work' load without compromising it, vs how different 'someone just delivering a campaign that ticks the box' involves. ie it would be a really big expensive thing but worthwhile if it sets lots of things on the right track.

And perhaps has staff hired to be liaisons in making sure what ends up being delivered isn't some fop.

ANd as others have said then it is a case of co-ordinating it with finding some good materials that we do want medics, allied, lay persons to actually read and update themselves with. And it doesn't all have to be on their shoulders doing it directly

But how we get people to do they've managed to get away with avoiding for so long is no small feat. And it needs to be followed up with some specifics because otherwise as we've seen .. it doesn't end well saying ' we want better x'.

 

[bobbler]

I'd rather see the charities being independent of the NHS and able to challenge NHS provision, rather than what they seem to be doing with the Tyson project and the work with ICB's where they seem to be paying for projects where they are collaborating closely with existing NHS and BACME therapists. Thus giving charity backing to perpetuating all that was wrong with the old therapist led rehab and psychobehavioural clinics.

I have no idea what sort of guidance they are giving to the ICB's in their 100,000 pilot. I hope I'm wrong and they are insisting on specialist doctor led clinics with provision for specialist nurses to do home visits for severe pwME, not pacing up courses led by therapists that claim to be NICE compliant but aren't.

this

 

[Kitty]

I do think that they could run a campaign, and get other key organisations involved, to push for that training to be less awful.

Oh totally, that's exactly what they should be doing.

I just don't think they should be providing their own training as a counter to NHS materials, because some won't take it seriously enough to even bother reading it and others may view it as a challenge or an agenda. It risks reinforcing an us-and-them situation when what we need is a partnership.

 

[PeterW]

I agree - I wish they'd kept sitting on their £3m and were now giving it to Sequence ME & Long Covid. There seems to have been a dearth of good projects to fund and there's no point spending money for the sake of it. Other disease charities probably aren't in that position.

I want to push back hard on this - the MEA have been sitting on £millions since around 2014. Had they spent it on an LDN trial 10 years ago we might now have a "useful for some" drug, or know that LDN is not useful. If there were a 'semi-useful' drug for people with ME, it would be transformational for increasing diagnosis, as it would be a requirement for drug access. We could also have considerably better awareness and care had the money been spent on campaigns, or we could know some other aspect about this disease which is currently unknown.

Had the ME Association also spent their cash, they might also have a better reputation and might have more support, resulting in more donations. This is not a zero sum game - saving money is a viscious circle.

The first part of Sequence ME will cost ~£7m. That is wildly higher than the UK ME sector has ever raised or spent, but is around what Parkinson's UK spends ever year on research. We cannot raise this kind of cash by scrimping and saving the pennies using the existing business model. To raise this kind of cash we need to become *orders of magnitude* better at fundraising.

Equally if the ME Association were not receiving good enough proposals, they should be getting out there and trying to drive interest. I simply do not believe that there is a lack of good ideas since the start of LongCovid - Chris Ponting, for one has identified lack of funding for his work.
ME Research UK does go out and drive resarch proposals. They do so with fewer resources and less money than the MEA.

 

[Sasha]

I want to push back hard on this

I stand corrected (seriously!).

How do we get some movement on this? Have you approached the MEA with your view? Wondering how we can get our charities to do better overall.

 

[V.R.T.]

Frankly, they can more than afford to cough up the ~500k still needed for Daratumumab and I can see no good reason why they don't.

Ditto bridge funding for Edinburgh right now. Have they ever supported Ponting's team?

And yes if SequenceME or any other viable DecodeME follow up work needs charity funding after all they should enter all of their coffers into the collection plate. There is no excuse for cosy collabs with BACME when real impactful research needs funding.

Completely agreed on LDN, its ridiculous we still haven't had a proper trial.

Edit: Has anyone ever tried to diplomatically put this case to them? Is there someone we could contact who might be sympathetic? Dara especially seems like a no brainer to fund. Reputation mending for them, esp if it's postive.

Edit 2: How many millions do we think/know they are sitting on?

 

[Yann04]

I don't have any problem with them sitting on money if their reason is that grant proposals aren't robust enough.

In a world with only research I agree. But not while people with severe ME are dying of medical neglect left and right and they aren’t providing any help. (They should be using this money to help pwSevere ME get appropriate care if they are in life threatening situations).

 

[Kitty]

Had the ME Association also spent their cash, they might also have a better reputation and might have more support

Not if they'd spent it on proposals that were unlikely to tell us anything much, which they often have. It's one of the reasons I'm no longer a member.

Funding is never about the general, it's about the specific. Does this application make a good enough case? Is this group's work credible? If not, there's no reason it should be given money.

If a bid won't succeed but does have merit, you can tell them to go away and make it better. More likely to support or refute the hypothesis, a clearer argument for why an intervention might work on a disease process, whatever the weaknesses are. Then resubmit it for the next round.

That process is crucial in upping the quality of work, and without quality we don't get progress. Good projects can come out of bids that in their first iteration weren't even fundable, but if a team can't make a better case, their idea may not warrant support.

Supporting projects simply because we have nothing else isn't good enough either. IF there's a good scientific case for funding an LDN study, and the team has developed a robust way to show whether or not it works, I'd be all for supporting it. Otherwise, it'll tell us nothing we don't already know.

 

[Kitty]

(They should be using this money to help pwSevere ME get appropriate care if they are in life threatening situations).

Yep, they could absolutely develop a project like that, starting today. Hospitals desperately need a care model to work to, and primary care needs strategies to help prevent people deteriorating so much their illness becomes life threatening (which starts with just understanding there's a risk of this in severely ill people).

The MEA ought to be well placed to lead it, but as most of their experience is in supporting mildly and moderately ill people, they would need to be willing to take advice from severely ill people and their carers. Whilst listening doesn't seem to be one of their greatest attributes, the urgency of that work and the level of experience and specialist knowledge required might override the reluctance to accept feedback.

 

[Andy]

Regarding how decisions are made by the MEA about what research they fund, they say,
"All grant decisions follow the same procedures, all are reviewed by our Research Committee and will include an internal and external peer review of all formal grant applications.", with the board of the trustees having the final decision.

Source

I could find no detail about who is on their Research Committee.

 

[Dolphin]

Equally if the ME Association were not receiving good enough proposals, they should be getting out there and trying to drive interest. I simply do not believe that there is a lack of good ideas since the start of LongCovid - Chris Ponting, for one has identified lack of funding for his work.
ME Research UK does go out and drive resarch proposals. They do so with fewer resources and less money than the MEA.

A difference between the MEA and ME Research UK is the latter has supported lots of research outside the UK.

While the only study I can recall the MEA funding outside the UK is the LDN one in Canada. That is an unusual one as the researchers got money from the Canadian authorities for the trial but didn’t meet their recruitment target. That one is led by Nacul who worked in the UK for many years. So it’s unclear whether there has been a shift or whether the MEA will continue to basically only fund UK grant applications.

 

[bobbler]

In a world with only research I agree. But not while people with severe ME are dying of medical neglect left and right and they aren’t providing any help. (They should be using this money to help pwSevere ME get appropriate care if they are in life threatening situations).

I agree. Trying to think this one through or organise thinking about it is tricky though. It points to there needing to be a bigger strategy that has a chance of working the pieces together to actually create change rather than firefight or get so far on one hurdle but not have the next bit lined up. And then I think of how many of these things require flexibility that then come down to decision-making models and what/who we might trust if/when there is the situation of there might be the next year something great research-wise etc.

like there is the 'Social Contract' term for implicit unspoken expectations/obligations between an employee and their employer (ie bigger picture things like not using them up and spitting them out vs what is actually in someone's employment contract explicitly)

is there something underneath with what each person either joining, donating to, supporting or just having ME/CFS and it speaking in their name etc has with the MEA and it might be based on assumptions and different things from different people that they assume it would do if it could or that there is support for.

I've put some examples below but I guess my point is that over these periods in time there might be implicit assumptions that money donated is either towards something specific or there is an implicit list of things that are specific in being useful/important things that are supported. And yet I don't know and can't remember over these extended periods of time what impression might have been being given out as to what money was being spent on when something was donated vs when it ends up being actually spent.


I'm not sure that even a lot of pwme realise how little there is, including with advocacy if someone ends up in an urgent or even life impacting or life-threatening situation, and might assume there is something between every organisation in the sector that knows what to do and could swoop in for example. Or even if someone is in a tricky situation regarding their workplace and getting their needs or situation acknowledged even with the materials available then is there any specific support that they can turn to that can get that sorted out.

Or many other needs people either don't know exist or don't know there are gaps because of services not existing for pwme that would cover other illnesses and there isn't something filling those gaps. Because it takes huge amounts of time to get up to speed as you have to have the energy to read things bit by bit etc. and whatever level someone is at they likely have obligations meaning they don't have any 'spare'.

And yes we all know about the need for research. But how many are aware how important method, as well as 'angle' and who is doing something are for something to be worthwhile. ANd what would be involved in something actually being worthwhile rather than sounding like a potentially exciting development (but perhaps not done so well).

It is tricky because I guess if something becomes a service then there is the fixed (or otherwise endless) budget vs first-come first-served or 'assessing the most deserving' (which gets complicated when there are communication issues in an illness due to exhaustion, meaning such things could be an access barrier).

And there might be an argument for example if someone in a bad situation that was the right person got helped very successfully that might encourage more to give if they know it is being used for urgent things that make-or-break but then its tricky if you don't get all of those aspects right.

I guess there are some bits that are simpler to raise money on and cheaper to do, or do more cheaply in a certain way vs others that become how long is a piece of string due to issues with war-of-attrition pwme can come up against and sunk cost issues if something gets dragged out but it only having been worthwhile if it can get to the end (otherwise if the other side know then they just drag it out).

And the question of is it better to focus down to have a really good squad of staff on just a few things that are really hard to get right, getting the nuance right and knowing how to get somewhere vs being spread thinly, particularly when we think about things like ICB and services. And finding a 'fair match' or somewhere that something can best be tackled that puts even the entire landscape of ME/CFS charities and other organisations on any kind of chance footing-wise to tackle that way vs what they might be up against/the whack-a-mole involved.