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Re: animals - I had a dog once that, after recovery from a leg injury, would fake limping if she wanted to abandon a walk and go home. This behaviour often coincided with foul weather. Once turned for for home the limp would disappear and she would eagerly trot with a spring in her step. Smart...

I understand, Barry. I think I'm just not up to wishful thinking today :)

This idea is wishful thinking because EC wouldn't agree to take part in such a thing just as she doesn't attend the Invest in Me conferences. eta or any of the rest of them

It would be a serious thing for a legal department to do this. I could be wrong but I don't think a legal practitioner would put their own professional standing at risk for EC.

I'm fundamentally flawed and the drinks and snacks know it

If I had one of those @MarcNotMark I'd be fighting my family to keep them off it

I'm feeling pretty deflated now, especially when I think back to the look of shock on my then GP's face when I told him about the phase 2 trial. Thanks @Scarecrow Good to know.

Sorry SlySaint, I was writing my post in response to the discussion as it had developed when you posted. My take away from the article was that she noticed a real need; that children with ME need help and lack appropriate specialist services. This is true. She may have tripped over something...

The British establishment in it's many forms doesn't do apologies. If they do, they squeeze out something ambiguous and inadequate, preferably after anyone involved is dead.

Maybe my perception is a skewed but... My concern is the danger of playing the man and not the ball. We want to have and keep possession of the ball, and we don't want to be benched. (Pwme have been benched for a decades.) The judgement of that can be a fine line and is based on perception...

I agree with you @Esther12. I'd add that speculation of this kind doesn't get us anywhere. It can be tempting, but it's a waste of energy, in my opinion, and plays into their narrative of martyrdom.

At least the coast is strategic positioning should he need to leave the country suddenly and discretely in a small pleasure boat. :emoji_rowboat:

@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!