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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

Yep if it turns out LDN works in these trials (however likely we think this really is) and I benefit, I've missed out on years of improved function because there was no good quality evidence and a lot of conflicting reports by patients and quacks who say that it's good for pseudoscientific reasons

It's very frustrating considering how important this isatuximab trial is

I think announced they got the finding for C19 a few weeks ago. Not sure whos going to fund another cd20 trial though...

I think that this has to be combined with a proactive approach to setting up good clinical trials of things that stand a decent chance of helping, especially when new evidence emerges.

I've seen accounts online of pwLC feeling much better in days to weeks on Baricitinib. And accounts of them feeling worse and having to stop, fwiw.

I think it's important that services contain at least some clinicians with good clinical trial experience, because when new findings emerge that suggest drug targets, if there are drugs that target whatever it is already available we want a robust trial set up as promptly as is feasibly possible.