United Kingdom: ME Association governance issues
- Thread starter JohnTheJack
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BrightCandle
Senior Member (Voting Rights)
And by differently we mean precisely the same but we are considering a rebrand so it sounds different.
This post and the following discussion have been moved from:
Rosetta Stone Study: £1.1m awarded to investigate links between ME/CFS and Long Covid
Yes, the ME charity sector can and should be funding these kinds of studies - the Charity sector funds more disease research than government does - but to continue funding more research, we have to get better at fundraising. That is the major challenge.
We don't need to donate the cash ourselves, but we need to get better at engaging our wider communities to raise money and donate to the ME Association, Action for ME and ME Research UK. That has been a critical failing for years.
Rosetta Stone Study: £1.1m awarded to investigate links between ME/CFS and Long Covid
Ish - the ME Association was sitting on £millions in unspent cash which, following a load of noise last year, is now being spent on good things.
Yes, the ME charity sector can and should be funding these kinds of studies - the Charity sector funds more disease research than government does - but to continue funding more research, we have to get better at fundraising. That is the major challenge.
We don't need to donate the cash ourselves, but we need to get better at engaging our wider communities to raise money and donate to the ME Association, Action for ME and ME Research UK. That has been a critical failing for years.
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V.R.T.
Senior Member (Voting Rights)
The question is how to we do this? I have limited resources as a severe person, but I want to do everything I can to ensure this happens.
I am a writer, and will happy write or copy edit anything (of a reasonable length) that would help towards this end, be it social media posts or something for websites or letters to charity people or whatever. But I have no experience in this field and need help being pointed in the right direction, and less severe pwME or able bodied advocates to help.
Firstly the objective has to be lots of people raising a little amount each. In the UK there are 400,000 people with ME. If each were able to raise £20 per year, that would be £8m / year, approximately 4x the current UK ME charity annual income.
But in reality it doesn't work like that. Many people don't engage, but the point is that every little helps.
First, talk about the need for funds with friends and family who you think might engage. This doesn't need to happen immediately - I have slowly got my family into donating and supporting.
Secondly, ask them to think of opportunities - sports matches, sponsored activities at work, choir concerts, cake sales, children's reading challenges... whatever. The challenge is engaging people to fundraise small amounts.
The additional benefit is that in fundraising for charity, those people also learn more about ME - as they talk to others about the issues, they learn about it themselves which is a double win.
So my suggestion would be to use your skills to reach out to your friends and family, talk about why fundraising is so important, and see if they have any ideas for fundraising activities.
It doesn't have to be huge money, and it doesn't have to be immediate. Just engaging people with the issue is a good start, and with your skills as a writer you may be well placed to do that.
Robert 1973
Senior Member (Voting Rights)
Playing devil’s advocate, they might argue that they were holding money back so that they would have enough in the bank to able to fund this type of study.
Regardless, I’m pleased that MEA is funding this.
I can’t remember how much they have hoarded but I’m hoping they might be able to invest a significant sum towards SequenceME too.
On fundraising, I have found that doing birthday and Christmas fundraisers on JustGiving and Facebook has been effective. I try to make the point that I would rather people make donation than give me things I don’t need – because what I need more than anything is to understand what is wrong with me and get better. For significant birthdays I’ve sent circular emails and asked close family to forward them to their contacts too. I’ve raised about £20,000 for different ME/CFS charities doing this and other things since 2013 – mostly for MERUK but this year I’m raising money for AfME for the first time (requesting that the money goes towards their research work).
Despite today’s welcome announcement, I’m reluctant to raise money for MEA because of all the issues which has been discussed elsewhere in here.
V.R.T.
Senior Member (Voting Rights)
Oh i totally forgot to do this with my big give donation!
V.R.T.
Senior Member (Voting Rights)
Fingers and toes crossed!
Agreed, sadly. They have more work to do to redeem themselves in my eyes.
Post copied, and following posts moved from Rosetta Stone Study: £1.1m awarded to investigate links between ME/CFS and Long Covid
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My related views -
It seems to me to be a bit incongruous to be claiming to be funding the biggest charity research study at the same time as not having funds to afford a CEO. Arguably, having a CEO, at some cost over the years, would have yielded a more professional, proactive organisation, more effective fundraising and potentially have supported campaigning for fair government funding, currently standing at 40 times less per person, & 160 times less in total than dementia funding, when dementia economic costs are only 10xs higher (currently) based on pre 2020 £3b ME/CFS annual cost to the economy.
Dr Charles Shepherd has Commented that whilst they are proud to fund a large study they are bitterly disappointed that the government will not provide ring-fence funding,
There's no point being disappointed , in my view, if the most pressure the mea has applied was a request behind the scenes. Also there has been reference to long covid swelling the numbers affected by a post-viral syndrome creating a crisis, however I would say the severe ME community was in a state of crisis way before.
Edited to expand on economic costs
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I’m pretty sure that’s what they did argue in one of their public financial accounts, but i cannot remember which one.
My related views -
It seems to me to be a bit incongruous to be claiming to be funding the biggest charity research study at the same time as not having funds to afford a CEO. Arguably, having a CEO, at some cost over the years, would have yielded a more professional, proactive organisation, more effective fundraising and potentially have supported campaigning for fair government funding, currently standing at 40 times less per person, & 160 times less in total than dementia funding, when dementia economic costs are only 10xs higher (currently) based on pre 2020 £3b ME/CFS annual cost to the economy.
Dr Charles Shepherd has Commented that whilst they are proud to fund a large study they are bitterly disappointed that the government will not provide ring-fence funding,
There's no point being disappointed , in my view, if the most pressure the mea has applied was a request behind the scenes. Also there has been reference to long covid swelling the numbers affected by a post-viral syndrome creating a crisis, however I would say the severe ME community was in a state of crisis way before.
Edited to expand on economic costs
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Dolphin
Senior Member (Voting Rights)
I know the popular view around here is the CEO approach but I have to wonder how much Sonya Chodhury is influencing people’s thoughts. It is an unusual scenario that she has a child with the condition. There have been CEOs before like Chris Clark (AfME) and Mary-Jane Willows (AYME) who made a right mess of things.
ETA: Also the Val Hockey (MEA) in the early 2000s before the trustees took over.
ETA: Also the Val Hockey (MEA) in the early 2000s before the trustees took over.
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Yann04
Senior Member (Voting Rights)
I wonder if the problem is with the MEA’s structure per say or mostly the people who happen to be on top of that structure.
Peter T
Senior Member (Voting Rights)
I don’t know if a CEO is the right approach or not, but my current concern is that the MEA needs to get its member participation right before it makes such major changes.
Historically the trustees have seen members not as partners, but as passive recipients of their beneficence. It may be that at times they have been genuinely beneficent as with Charles, but also at times they have been unhelpfully dictatorial.
Andy
Senior Member (Voting rights)
Well, I have no evidence that Sonya is, or isn't, influencing people's thoughts but your post makes me wonder why would it be a bad thing if she was, and why should there be an assumption that she is only good in her role solely because she has a child with the condition.
Kitty
Senior Member (Voting Rights)
No. A charity shouldn't be run by, or operationally controlled by, its trustees. And any CEO of a small charity is likely to be picked for the role because they have some personal knowledge of its area of interest.
There are poor CEOs and a minority of outright bad ones, but the alternative is a group of people who don't have the skills to get a CEO job but do it anyway, and are only answerable to themselves.
Dolphin
Senior Member (Voting Rights)
Of the four I mentioned:
Sonya said something along the lines that her son got ill with ME after she applied for the job, it was a fluke she has such a personal connection.
Chris Clark had no stated personal knowledge and behaved like someone who didn’t have good insight into the condition. I heard it speculated he was worried to rock the boat in the sector in case it affected him applying for his next job because why otherwise was he so bad: who knows.
Val Hockey had no personal connection as far as I can recall (and brought in a medical advisor to replace Charles Shepherd who said she wasn’t willing to argue against the statement that ME was all in the head, or something like that, which perhaps hints she might not have a personal connection but who knows).
Kitty
Senior Member (Voting Rights)
But it's still not a convincing argument for being run by trustees instead of an officer, surely?
A history of inappropriate appointments or poorly performing CEOs doesn't suggest to me that they're a bad option, it suggests organisations aren't good enough at recruitment and performance appraisal. If they had reasonable self awareness they'd know when they needed to get in professional help and guidance. There's plenty available to charities and it's far from unaffordable.
Agree on feeling their response seems a distraction and there is a major issue with the main action for this not being sorting turn over of trustees and making the role from one not even accessible like normal trusteee roles and therefore ridiculous regarding me/cfs to one that isn’t basically as abnormal as their roles currently are except for reasonable adjustments to ensure pwme are welcomed and accommodated
The one line that rings out is that it’s closed apps to those in the organisation already. It’s all very carry on regardless
They can’t overhaul them all at once without being vulnerable to entryism but not putting a single one of the roles that’s got an incumbent way past the good practice 6-9 years just makes me think they only allowed this review as a delaying tactic.
I have no idea what’s going on in their heads in why vs what they are telling themselves is their reason but they aren’t acting like good oversight safeguarding an organisation for pwme as a group of people anymore .
And now they are doing this despite having the roadmap of a way out so it makes it even less excusable.
I feel even more concerned by that gut feeling that potentially whilst Charles was doing the good work of guideline, and social media and press related to this - which was their high point most still support the MEA based on thinking it is…. What might have been going on behind the scenes is at least some of the rest ‘in charge’ having a different plan they were implementing that completely contradicted with that public image upon which funds and even legacies were made etc.
And that according to how governance works that ‘in charge’ shouldn’t have been to the level it was because most still couldn’t imagine the people who were supposed to just be ‘checks and balances’ were potentially ‘setting the strategy’
I struggle to see either the acknowledgment, resolution or want to resolve this issue yet of this problem in what I’ve read so will be very happy if someone can put my mind at rest and interested eg in @PeterW view of this?
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Kitty
Senior Member (Voting Rights)
I now wonder if Charles was one of the only sensible heads there, and some of the trustees were pretty much a cabal. In which case they were likely to win out when he stepped back.
I always respected him, but if I'm right, I underestimated how hard he had to work to keep the thing on the rails.
They did indeed argue that they were waiting for the right moment, but they have had £1million (and growing) in excess reserves since around 2014. At a certain point people have the right to tell you to shit or get off the pot.
At the end of 2024 they had £3million-ish in excess cash, but that has now been reduced significantly by the work they have (rightly) commissioned.
For over a decade the ME Association has refused to invest in fundraising (they regarded it as wasteful, which is hugely misguided), so their fundraising capability is low and small. Having been a leader in driving the stink about their past financial management and governance decisions, I would urge you not to withhold from donating to the ME sector. We need a dynamic, impactful and successful charity sector if we are to achieve effective therapies, better disease recognition, support and care.
Regarding SequenceME, if that is to be paid for through fundraising, we need to majorly up our game - the £7m figure for the first round is 3.5x annual ME sector fundraising (which also pays for all the other stuff). Currently that creates a research 'contribution' of around £500,000 / year. It would take us 14 years at the current rate.
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I think you edited out some really salient points about the charity governance (or they have disappeared from elsewhere in the thread). That trustees were and are ill-equipped to manage that charity, and a professional CEO would bring significantly improved performance (recognising that not all CEOs are great... but a good one has a huge impact).
I wanted to acknowledge and support that position. It is absolutely true.
As is your point about being in a crisis. If that money was being saved for a 'rainy day' it seemed to me that for many people with ME, there has been an ongoing downpour for years.