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My prodromal phase symptoms (insomnia/sleep reversal and DPDR/panic) cost me any chance of a career even before I even started out in life so I entirely empathise. I'm hoping it's not the case but we will just have to wait and hope and see.

On a tangentially related note, for those of us like me who suspect a prodromal phase, it would be interesting to see what symptoms remain if any. I.e. does the insomnia, DPDR and panic attack type episodes I began to experience at 19 go away with a really effective treatment, indicating it was...

Agreed. Especially with the fact that pacing at the severe end is essentially unlearning how to be human.

I have been thinking about this- I was very surprised after several months of severe/very severe ME that when I felt well enough to play the guitar again, the muscles generally were ok unless I tried to bend strings or play fast, and what stopped me was that I very quickly got exercise...

So you think it might lose efficacy with repeated doses? Or is it just that the risks are too high? On a related note are the risks immunosuppresion? I know cyclo had a lot of risks but not as au fait with daras

Is there a page/line limit for poems or is it also 1000 words?

You seem to have changed your tune somewhat on dara's possible efficacy, which iirc is anti cd38. Are you still sceptical of the cd19/20 drugs like those Schibenbogen is trying?

Her trial that is designed to cure ME/CFS that is apparently underway according to this article sounds utterly bizarre. I mean I'd love if it were to work but...

It's interesting to read that as Mella seemed to question why Ritux phase 3 failed in his charite talk this year. He was talking about the fact they had to give a lower maintaince dose.

I had no idea these names were coined by s4me members!

Yes I think preparing counter arguments to respond with rather than bringing it up in anticipation is the way to go.

I relate to this too. I remember when I was mild I would feel like I was wading through tar in my worse crashes. Now I feel like I permanently have that same symptom.

Yes a notable increase in clumsiness and decreased reaction speed at mild. Now at severe things startle me and there is a notable delay before the physical reaction.

As nice as that would be (and it would be great) the rest of my existence will still be pretty unbearable without an effective treatment. I would be very happy to be able to tell people about my illness without the fear of disbelief and the shame and misunderstanding that BPS dominance causes...

No it's probably me! I felt like I could almost grasp it the second time I read it

It's probably a mark of how bad my brain fog is today that I can't tell if this post is a joke :dead:

Completely agreed.

Well, that's very disappointing but not at all surprising. I guess the hope for UK research funding lies solely with the Edinburgh/AfME initiatives. Obviously I want treatments as fast as humanly possible, but in the meantime I would really love it if I could be treated like what I am - a...

Surely it is possible that there is one mechanism for the fatiguability and another one for PEM, and that they show up together in ME/CFS because the capillary thickening is caused by a process downstream of the one that triggers PEM? On the other hand, weren't these biopsies taken from mild...

How can anyone delude themselves this way let alone trained medical professionals? It never ceases to alarm me.