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@Lilpink Do you think your neurologist might be interested in discussing this research with you? Though I imagine it's still early days for this treatment ..

This is a good letter, Lou. I'm interested to know the response.

Jaw on the floor. Brilliant if it happens, I'm guessing it will unless something happens to stop it, like illness, a general election, world war 3... Thanks @NelliePledge

Well hello weird twin! No I don't feel my knee give way, but when it develops I find that right foot lands pointing inwards rather than out. It feels like hard work to place it properly. So somewhat pigeontoed on that side, and it drags a too. I feel a bit like I'm turning into Quasimodo.

@Sasha It'll be interesting to see if increasing B12 improves things for you. If you could tolerate some leg excercises for balance they might help if the problem is partly muscular. If it's cognitive, which I know can be an issue for me; I don't know what else to suggest. I'd be happy for...

I experience something like this; in my case I think there's more than one thing at play. Firstly it becomes more noticeable with PEM. I think for me there's a coordination problem; an increased general clumsiness that includes my balance. I also develop a kind of achey numbness on my right...

A good question, and it's not just relevant to pwME. Access to the health system in the UK just isn't designed for sick people

I've just finished showing the videos of the lovely Esther's TEDx talk to my son. It's a very good illustration for a discussion about ME politics, depending on the points you want to get across and how deep you want to go. Thanks Esther!

@Lilpink It seems you've become upset or indignant (?) at being called a stalker. That's a shame and unnecessary because I did not accuse you of being a stalker. These are all my relevant posts: Re: EC's grandfather and Oxford I then read your reasoning behind this line of discussion and...

I have most energy early in the day, especially if I wake and get up slowly and budget it. On days when I manage that well I may have more energy again in the evening.

I really hope that this false narrative about this man is thoroughly changed in his lifetime, while he can 'enjoy' it.

Now that's interesting! When I looked online, and it was maybe 3 or 4 years ago(?) there was nothing available as cheaply as that, and I think it was somewhere in Birmingham that I considered. Same place? Anyway, it indicates to me that there has been a demand for vit D testing such that it's...

That's just fascinating. Somebody give Klimas and her team lots of money for ME!

True. I increased my D3 following my test for that reason. I don't think I would be able to get another test on the NHS.

I asked a GP at my surgery for a vit D test. I had already been supplementing with D3. She understood when I explained why it would be very reasonable in my case to check it but said that 'they' often refused to do the test because of the cost. Together we wrote a detailed account of why I...

Should I be taking CoQ10 then? I think I should find out more about it

@ Wonko Not something that had occured to me, but I wouldn't be surprised!

'Verity' means being true

I can't actually remember what the BBC article said, or anything much from this podcast. If anyone thinks that this thread should be merged with the BBC article or deleted that's fine with me, go ahead and report it. The way I am today by tomorrow I probably won't remember either item at all...

I agree, though I understand why people get caught up in that detail. It's not for me as it seems unnecessary and may risk looking a bit stalkerish.