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I think the best approach would be to reach out to Charles and express patient concern and then go on to discuss the need to plan for succession. But I also still think the solution to this is to find new trustees whom patients trust. Even if Riley is eventually forced out, who do we want to...

I know how much work you've put into this, Adam, and how long you have been working on it. Thank you.

Just to clarify: my point is that many are calling for him to go and many think that over the next couple of years there should be some sort of transition, but so far no one has been suggested who could take their place. Not only do I think that is important to avoid out of the frying pan into...

Don't want to sound like a broken record, but if not them then who?

Thanks for both replies which are interesting and helpful. I know patients are divided over a merger, and I know many share your concerns and are against it because of them. My own view is that it would be better, certainly in the medium term, but it's not a deal-breaker for me. If patients...

I do understand that, but I also don't think Charles needs to be removed or challenged. The problem is not with him and it would be best in any case I think to try to make changes with at least his consent. There are only a small number of trustees and it would only require a majority of...

I don't think it would make any difference to reforming the governance, but do think he should be nominated for an honour.

I think the best, and actually only, way of making progress is to elect some decent trustees.

I was diagnosed with arthritis at 29. This is how it feels Roisin Kelly It all started with a swollen knee last March. It had been aching for a few days and one evening after a work event it became so sore that I couldn’t face the Tube home. I was 29, physically fit, with a strict (and intense)...

Ah good to know, thanks.

Thanks. It's not even connecting at the moment: 'Couldn't connect'.

I've tried a few times to phone the 0800 line to ask for a PIP form, but it doesn't connect. Have others had this problem? I wonder if they're particularly busy, so it just doesn't connect.

Yes, I know and appreciate you have spent a lot of time listening to patients. I feel quite strongly, though, that there is no source that can support these claims. I would not put it as strongly as the paper does. I think it would be better to say that from this experience of yours you think...

I used to be what would now be called heavy binge-drinker. It was relatively common in my student days and in the year in France I spent afterwards to drink to oblivion. In fact I used to do it at least twice a week (after the Wednesday and Saturday games at university; after Wednesday training...

Thanks for doing this @Jonathan Edwards. It's excellent. I didn't follow the other thread, so these points may have been raised and dismissed. I think all these are going too far. In fact by saying ME/CFs is 'characterized by... orthostatic intolerance', the article is in effect creating...

I (and another forum member) was on the PAG for Danny's proposed study. He specifically wanted ME patient/carer involved and very much looking to investigate LC-ME and open to everything I said. We were brought in right from the beginning, but it all just ground to a halt through lack of...

It sounds like it hasn't been updated for a while.

I have the low night-time rate, and put the washing machine on overnight. It lasts until 7:30, so have my tea and porridge done before that. It does seem very unfair. I'll see what AfME can do and take it from there.

Thanks, Nellie. It sounds to me as though they haven't updated their approach in a while. I'll see what AfME says and keep everyone updated. Nest is the Welsh version of a scheme that also runs in the rest of the UK, I believe. At the moment they're giving grants for solar panels and air fan...

'A “software” issue of the brain, not the hardware (as in stroke or MS)' New dualism.