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I agree. I was talking more about the scale of harm than individual cases. I am very glad I discovered S4ME when I did because I can see myself having gone down that route if I hadn't.

The Born Free protocol and CCI stuff are dangerous absolutely, but nowhere near as dangerous as the fact that it is NHS policy, and the policy of countless other health systems, to treat everyone with MECFS symptoms in a way that will make them sicker, and when they get really sick, abandon them...

Oh no doubt, but in my experience people with ME/LC who talk about MCAS and stuff are quite vehemently against the functional paradigm. To play devil's advocate, this is what they think about ME/CFS too. This to me shows clearly how dangerous the psychobehavioural cult has gotten. They have...

I agree, but to be clear there is very little overlap between people who go in for MCAS, POTs, CCI etc and those who believe they have FND. In fact most people seem to adopt those labels in response to being told they have a functional problem. Because to them it is concrete, proof it is not...

Curious if this could fit together with the possible responses seen in the dara pilot, the Mensa Cd38 finding and @DMissa's recent B cell finding. Edit: To be clear I'm not a Prusty devotee in the slightest but I'm just wondering if there's anything at all of value here.

I was responding to this bit in particular. I have a lot of respect for Dakota and everything he does for the MECFS community. But I felt I had to say something in this instance.

@Dakota15 I am so angry about what ICE are doing in Minneapolis and can't imagine what you are going through right now. It is truly terrifying what is happen right now. With respect, this MECFS stuff is life or death though. Simon Wessely propagates a policy which leads to the severe...

Understood. Im glad to hear all is not lost.

Very disappointing to hear. I felt a little bit hopeful after your comment yesterday. Is that our hope for severe services shot down or are there things afoot that might change things? Yes precisely. And the retrospective anger when this finally breaks into the public conciousness isn't going...

Could stem cells somehow reset an erroneous immune signalling loop or replace bad immune cells?

But the team could request sibling participants to get in touch to give their consent - surely there is some way of figuring out who's sample is who's retrospectively?

This sounds like an efficient way of doing things.

Do you have any reason to hope that?

There is absolutely no way that any claim to care about a condition can stand up to examination when it is policy not to care for the most severe cases. As someone who is severe because of the govt/NHS approach to MECFS, I find it utterly repulsive that still they refuse to provide any service...

So was Leibniz a determinist then?

You're probably right. (although I am very concerned about my risk of CTE!)

I think for my personal case, sadly, if we take the view that environment is a factor, I probably wasn't likely to get it, or at least I wasn't likely to have more than a bout of post viral illness as my mum did in her twenties. In my late teens and twenties I had a lot of head injuries and...

Worsened hangovers at 19 were one of the first signs along with insomnia and DPDR that something wasn't right with me. When I got full ME/CFS seven years later the hangovers became even worse and I noticed feeling drunker with less alcohol although I was trying to cut down a lot on drinking at...

The current situation in terms of who has the power to shape care and public understanding is not 'balanced' in the slightest. It is weighted almost entirely towards what is the MECFS equivalent of climate change denial. The idea that we should be 'fair' by giving equal standing to the people...

'It’s true that the psychiatrists who hijacked this friendless disease decades ago weren’t using psychiatry to claim that ME isn’t “real”. They were, on the contrary, using ME to try and emphasise that psychiatry is real – “Look how properly actually sick your delusions have made you!” They’ve...