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I just don't know how you could be any more meticulous about trial design without any lab markers/biomarkers to go off without adding a control group right off the bat, which I was informed a month or so ago isn't feasible or desirable.

What presentations is everyone looking forward to/interested in?

Good article as always Dave - i would make the small point that comparing the activists in Paris to Kanye West is probably not the best point of comparison considering that in the last few years West has openly claimed to be a Nazi and admire Hitler, sold swastika merch on his website and...

That sounds like an interesting idea. You could have e.g. Cliff, Selin lab people, the Cambridge IFNy paper people...

She's quite a big deal in tennis no?

Is there anyway the BTN story could coalesce with this long covid cd8+ T Cell/IFNy paper? https://s4me.info/threads/spontaneous-persistent-t-cell%E2%80%93dependent-ifn-%CE%B3-release-in-patients-who-progress-to-long-covid-2024-krishna-et-al.37335/ Obviously we're talking about a different type...

Ive just seen this, a grand total of wasted money seems like a really good idea. It could really drive the point home to funding bodies that this isn't some brave new frontier but a played out dead end. Would anybody be able to try and calculate? Perhaps starting with one country for ease but...

On the subject of the states, does this information about BTN mutations in MECFS being likely function impairing Imply that depleting T cells could actually be counterproductive and that Naths Keytruda trial revving up T cells could have some merit after all? Or could campath still induce a...

Absolutely! Sorry to hear about your struggles, glad you were able to overcome them.

Could it possibly be both?

Im quite worried too fwiw. However, there are all sorts of factors that could be influencing who responds and who doesn't, esp outside of a controlled setting. All we can do is wait and see what the trials bring. We should know about the pilot expansion with severe cases fairly soon I think...

That's disappointing to see...any information on his NK cell count etc? He says it's stabilised him and he has a mild improvement with exercise tolerance. That could easily be natural fluctuation but maybe some severe pwME need a higher dose or more than one course of treatment. I'll be very...

Yes the Germans might be well placed to do this, especially with the National Decade funding. And I believe funding isn't exclusive to German projects, so they might fund something in another country. I wonder if it would be at all feasible to get something up and running in the UK. If there...

From what JE has said, Campath would be one infusion, so that would make it much more viable even without home visits.

That sounds very hard to go through and I empathise with much of it (apart from the being sporty!). I can't know what part my drinking played in triggering or perpetuating my MECFS but it certainly didnt help! It's very hard to deal with the shame that comes with addiction, I'm sorry you...

Is there a possible way to do this with some of the DecodeME samples or through recruiting participants from the DecodeME cohort? Tagging @Andy

Ever since my (probable) prodromal onset at 19, I found that alcohol relieved my DPDR/panic symptoms during social events/gigs etc but they became much worse the next day. The prodromal symptoms were labelled depression and anxiety and antidepressants didn't help so I used alcohol to mask them...

@Jonathan Edwards if you have a moment to answer this question I'd be very interested to know your thoughts.

O'Sullivan publishing fabricated bullshit? Quelle surprise...

Thanks for pointing that out. I'm a typo factory these days!