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Yes I have dealt with both. The long covid service were beyond useless. I have been transfered over to this new service from ECCH ME service. Who I hadn't heard from since my OT moved on a couple years ago. I have spoken to several people from this new service while setting up this appointment...

No idea but that's certainly not what I was offered.

I'm sorry - I hope your call goes better than mine but I was not impressed.

Just spoke to the new Suffolk ME and Long Covid Service. This is whats replaced SNEE. SNEE OT was mostly ok with the odd dangerous pacing up suggestion until my last phone call where they suggested shipping me to the notorious Leeds inpatient unit (of Miller et al. BMJ fame) And now this new...

Thanks. Interesting to see Campath discussed in that first thread.

In what ways could these processes be abnormal?

What kinds of cells/proteins etc could be providing signals that might provoke a T cell response?

'our team previously showed a striking immune dysbiosis in different blood immune markers, including changes in the functional capacity of mucosal associated invariant T (MAIT) cells and Th17 cells, and a decrease in the frequency of CD8+ T cells and natural killer cells in long-term ME/CFS...

But they are promoting a harmful and stigmatising myth about us in a national newspaper. People reading that some people with ME get better after confronting what they 'gain' from being sick in the Guardian today is going to cause tangible harm to pwME/LC, whether that's friends or loved ones...

The issue is that while your definition of the term here is reasonable and fits with theories of ME/CFS we have been discussing, the concept of 'central sensitisation' is intrinsically bound up with BPS psychobabble about people misinterpreting normal sensations and having false illness beliefs.

This is currently the second most viewed article on The Guardian. With so many desperate parents of kids with Long Covid right now, it is a dangerous time to be publishing these sorts of unevidenced and stigmatising claims. Obviously as Trish says this is the writing of a desperate parent, and...

Why? Why are they sure? This article is dreadful.

"The syndrome is clearly an umbrella term for different illnesses that are poorly understood by modern medicine. We met people who had recovered thanks to talking cures. One told me his ME disappeared when he took a course of psychological treatment in his 20s and understood what he had to gain...

The previous SMPDL3B paper was critiqued on here for methadological/statistical issues - I think it was claimed the differences were not particularly significant? Does this paper have similar issues?

Maybe it's brain fog but I still don't understand what the specific demands of this legal challenge are. I want to support it but I can't if they aren't clearer about what kind of service they are pushing for. I feel uncomfortable giving my money to any campaign that might inadvertantly further...

This is true, but if hypothetically there was a way that with more funding the trial could finish six months sooner with the same rigorousness we need, then we have to find it, because it may mean a significant proportion of that six months worth of post viral suicides and deaths will be...

To be crystal clear: I am not advocating for the study protocol to be changed now, I'm asking why they chose 72 months.

I totally forgot that! Of course. Well lets say 9 months then, so six months after for unbinding. Why does the follow up have to remain blinded six months after the injection is given? Im just curious why you need such a long blinded follow up period, and when you could unblind after 6 months...

After six months? Im not sure if that is true. Six months would surely be enough time blinded to see who responds. The improvement with dara (if real) happens a long time before that, so it's not like you would be inducing placebo improvements when you unblinded. But I'm not saying it should be...

While I doubt they could be persuaded to break the blinding sooner, I do wonder what the rationale is for having such a long period of blinded follow up. Surely six months blinded would be enough to show an effect and identify responders, and then you could follow for 72 weeks or more unblinded...