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I sometimes feel this way too. But I don't think it's a good way to look at things really.

Well, that's another point in favour of my theory that my alcoholism was a factor in my developing MECFS. Although I had a clear infectious trigger at least for my definite onset, and my prodromal onset (or whatever) happened during a winter when I was going to a lot of pubs and parties, and...

What situations are those?

That is a huge difference! What could be the reason? Vaccinations, toxin exposure, concussions from explosions/heavy gunfire?

When I have the energy I will try and reply to this in detail.

This is what I was referring to. I wasn't aware of the medical distinction. Agreed, we desperately need better understanding of very severe. Although to be clear about the paralysis episodes, for me these episodes started when still mild but starting to deterioate. My partner is moderate but...

Posts moved from ME/CFS Alliance 20th anniversary event - the Pavilion, Winchester Cathedral 4th March 2026 A lot of people including myself have transient episodes of paralysis. I think it would be misguided to dismiss this as it is a quite commonly reported symptom, even if it is not universal.

I understand your reservations but to me it felt reassuring that Ponting feels that way, as he is generally very measured in what he says, I think in deliberate contrast to other researchers who have promised far too much.

That's really good to hear. Will anything be put up online do you know?

The BPS lot will have a hell of a hard time spinning it if there's a truly effective treatment and a significant proportion of us who were really ill can suddenly freely speak out about what's gone on. The NHS might fare a little better but I think it will hurt their reputation when people...

I wonder how many scary legal threats from our favourite knight of the realm he's recieved

I think this is excessively pessimistic. If something really works for MECFS it will be very difficult for the rehabbers to argue against prescribing it, and very difficult for the NHS to make the case that they shouldn't provide it if people who can access it privately are improving significantly.

This sounds like something PRIME could maybe do?

Yeah, I had been quite depressed for about a year when I got the symptoms that led to my depression/anxiety diagnosis. Which was part of why doctors and later the psychologist I saw lumped them in together, as well as me and the people around me. I never recovered from them, and a lot of them...

I also had clinical depression before MECFS. This was my position for three years - that this was nothing alike (although internally I questioned if I was wrong) until a GP persuaded me otherwise. Which is part of why my distress at my deterioration was so extreme. No amount of therapy or...

MECFS service provision remains a kakistocracy it seems.

This is all so true. It is so nasty that the people who doubtless spend time lobbying against the funding of things like SequenceME which bring real hope to patients go on and on about 'hope'; when what they actually do is falsely convince people they can have their lives back, often leading...

I also have bad congestion in my nasal passages. I feel like I've barely taken a full breath through my nose since becoming severe.

I could have written this bit. I had a lot of unpleasant symtoms from age 19 that I now suspect were a prodromal or very mild case of MECFS. In my case it got significantly worse and unquestionably became 'mild' MECFS with PEM with an infection at 26 though, rather than a gradual decline.

Uplinza