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Oh no is this us with immune signalling? :emoji_sweat_smile:

Are there any studies we want to see that we could get German advocates to lobby for? Any replications or any areas we think would be important to look at? Any basic lab work following on from DecodeME?

This was a really good and necessary article. I really hope it sunk in with some of the people who are pushing inflammation and viral persistance etc. I did think there were a few notable omissions unless I missed them: The finding of higher cd38 and cd24 in MECFS B cells. Jackie Cliff's T...

I didn't know that. It makes more sense why she's still pursuing them in that case. Does she have any evidence they are 'higher quality' in MECFS?

No need to apologise (or to have deleted it), I got a bit worked up and maybe posted on the attack. I understand that your fear and pessimism is genuinely felt. I was a very pessimistic person before this and in many ways still am so perhaps I find it harder than most to ignore statements like...

I am getting really sick of the pessimism that keeps being trotted out over and over again every single time anyone offers the faintest glimmer of hope. Our grandchildren? We have researchers and clicnians on here most days saying that there is hope for a breakthrough soon and it's met with...

From MECFS patients Gaul Parner and Malistair Ailler.

What? That's crazy! As if they can get away with never saying its that...

I've gotten the distinct impression over the last year or so that the researchers and clinicians on this forum are not nearly so pessimistic. There is a lot of talk about how a breakthrough could happen soon. But I don't need to tell you that at this point. I think there's a middle ground...

This is a huge problem for the MECFS and LC communities and I think articles like this are the best way to address it. Wirth in particular presents his speculations as fact when he has done no basic research or clinical trials which is very problematic. They do fund some good research but yes I...

So this reports in like 6 months! I'd forgotten about it tbh, and how fast they're moving. So it works on TLR pathways, not clear which from this - could be interesting to know if this has an effect.

Does this tell us anything interesting?

Do we have estimations of how long SequenceME and Long Covid will take? I think someone estimated 18 months when it was first announced but that was when it was just going to be the analysis of DecodeME samples iirc. Obviously the LC collection phase will take longer. If the project is...

Why is it that people who flog poorly evidenced treatments always go on about there not being magic bullets, like that makes their poorly evidenced treatment more appealing?

Also when you're severe ignoring that urge can lead to absolutely brutal crashes.

I maintain that pilot trials should have controls, even if that isn't 'how its done'. I think there would be less failed phase 2s if they did.

The responses in the ritux pilot do not look like the dara ones - someone posted them in one of these threads the other day. They are not anything like as sustained or as large. In phase 2 ritux failed in its primary outcomes but they went ahead because of secondary stuff iirc. I'm not saying...

I think we could debate this til the cows come home but I disagree.

I mean that F&M should have included controls in the pilot. If none of the controls had had sustained improvements like the improvers who got the drug did, we could be a good deal more confident that the results are not placebo.

Can you say anything about any more targeted projects you're aware of? All I can think of is the CA10 investigations that JEs pain colleagues are setting up.