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Very much this.

re: BACME: get rid of all the old lot and replace them all from top to bottom? BACME is a loose talking shop. I have never understood people's portrayal of it as a single hierarchical organisation with an aligned position. Is it really much different from the Royal College of Physicians? The RCP...

Regarding a professional charity CEO: any ambitious CEO will want to step on to other things in the future, and will look to use the current position to demonstrate their capability and impact. CEOs should not stay in place forever - that leads to out of date and ineffective organisations...

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...

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...

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...

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 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...

This is brilliant news. It's great that Danny Altmann is now funded to be working in the ME sector. He's a great advocate with a significant media profile. It's also great that the ME Association is funding this - it's easily the biggest study they have ever funded, and it's exactly the type of...

Thanks for an interesting discussion on this paper. Much of it is over my head, but I am pleased to see a shared view that this was well undertaken and fosters some new thinking. Does this need to be replicated, or do people think it is interesting as-is?

If the MEA were not able to find research to fund and did not want to fund international trials, one option would have been to hand the cash to ME-Research UK (or Co-finance projects under ME-R-UK's leadership). This is absolutely legal and doable.

Yes, we first had a private meeting with them in around July 2022 up in their offices. The issues raised were disregarded, and (at their request) we kept that meeting confidential until last year when Charles Shepherd talked about it at the AGM (so I feel I am now able to discuss it). Knowing...

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...

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...

No, I think this is a good example of the value of scrutinising the organisation. These questions are totally valid. They exemplify a wider issue and should be asked (and should be answered). If there isn't a good answer, then the question has identified a problem.

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...

Which, I suppose, speaks to a lack of coordination between ME charities, and a lack of strategy (did the ME Association know that another LDN trial was underway? If so, why did they decide to fund another while another was already under-way? Do they expect diverging results? Do they see...

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...

Fully agree with you on all 3 points @Sasha, and each speaks to issues with governance: Metrics: Yes, we need to understand both the scale of the problems and progress - for example it's great to say that they are training healthcare workers, but how many out of how many? If they have trained...

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...

Hi All - the ME Association's 2024 annual report has now been released. I would urge you to read it as this is one of the ~3 organisations critical to driving change for people with ME in the UK: You can find it in the document titled "Full Accounts" on the ME Association's Companies House...