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It is bizarre how little transparency there is for such a large and expensive project. Or perhaps it isn't...

While I think the grouping of mild moderate severe and very severe are broadly valid, I do think the words should maybe change. Mild ME/CFS entailed cutting down on most of my socialising and hobbies, not being able to work full time, regular spells of being so ill I couldn't easily leave the...

Seems like this could be really vital for LC research if they select/stratify cohorts properly.

So they pivoted to WGS then. Am i right in thinking it's more sensitive or specific? I remember Chris Ponting posting something showing the evidence of combining both WGS and GWAS.

Ah right. Whole genome as well my brain foggy mind thought it read GWAS. Why haven't they done a GWAS? It makes no sense to me.

Yes I heard rumblings about this happening a little while ago? Took them long enough. Anyone have any solid info?

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...