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Thanks. I've posted the conference poster and video links in the Severity of Acute Infectious Mononucleosis Correlates with Cross-Reactive Influenza CD8 T-Cell Receptor Repertoires Nuray Aslan et al 2017 thread for further discussion there. I hope. Really would like to know what others think.

Moved post The conference poster and a video presentation with some interesting pilot data which haven't been discussed yet (I don't think): https://www.massmecfs.org/images/pdf/MECFS_FOCIS_poster_2020.pdf video presentation related to above poster: Abstract and summary taken from the...

Have these been discussed yet? Looks like the sort of thing that should have been but can't find any threads? Just pilot data, tiny numbers, no detail on cohort selection given etc. etc. but they do seem to be rather intriguing early findings (at least if like me you don't fully understand...

It is possible. It happened to me and also one other person I know. MRI scans and spinal fluid proteins support diagnosis but it still requires quite a bit of clinical judgement. I don't know how specific spinal fluid proteins are; the doctors never managed to get any out of me so it was never...

I have heaps of tendon and ligament problems, from shoulder to ankle. Just talking arms I have recurrent issues with: left rotator cuff, right biceps tendinopathy, left and right tennis as well as golfer's elbow - without ever having played either sport - plus left and right wrist flexor...

[The bit where he talks about ME starts around minute 22 of the interview.] Good summary by @Hutan. The discussion of his first two books didn't give me much idea as to what to expect from this writer so went looking for audio versions. In English, zero luck. But his first book, The Invisible...

Whether they do or don't believe their own ideas, this is the important - and damaging - bit: The medical community - and a substantive portion of the general population (mind over matter, you're in control of your own destiny, etc) plus politicians and government departments, basically...

The similarities between long Covid and my symptoms are getting a bit freaky. I'm beginning to think I might be having long Covid since long before it was "invented".* Anyway. Chilblain-like lesions aren't a common(ly mentioned?) ME symptom but I do get them, mostly on the fingers but also the...

Yeah. I'm never sure what date to use for my onset. Simplified it went something like this: 1977 virus -> mild ME -> 95% remission 1997 virus -> mild-moderate ME -> 85% remission 2012 virus -> moderate ME -> deteriorating to severe ME 2016 diagnosis (not before time!) So do I count from way...

Not so sure. I have a horrible feeling that once we're post-pandemic the world will just want to move on and not be reminded of tough times by those pesky long-haulers. Seems to be what happens after disasters of every kind. All people want to do is focus single-mindedly on building back their...

This had me scratching my head, too. In addition to the possible explanations you came up with, @Simon M, I had the following thoughts. 1. Increase in diagnosis (similar to your point 1) Respondents may have interpreted the question regarding onset as asking about date of diagnosis and there...

Go Daniel! :emoji_bouquet::trophy@:thumbup:

Despite some sound quality issues this interview should be required listening for anyone considering undertaking the LP and even more so for all those health professionals who well-meaningly but naively push it on patients (my husband has had both a GP and a physio, both otherwise competent...

Thank you @trudeschei. Really interesting how different the time course of ME is from the typically presented one for so many respondents. As for the number of responses you got - 5822 - that's just amazing.

I've no idea about the science behind it but I sort of do this anyway because I find that if I lie down for more than about 45 minutes my POT on getting up again is much worse than if I get up briefly after 35 minutes. So my day is a series of lying down/reclining for 35 minutes, getting up and...

Another similarity that struck me is the way all 3 cases initially tried to maintain a semblance of normal life, then tried to adapt their lifestyle in order to do so - they showed remarkable grit in the face of adversity - yet overall, apart from some temporary partial remissions, they all...

Disappointing that they keep pushing that linear time course conception of PEM. Parts of it are good but others are at the very least highly misleading. Yes, immediate symptoms are different from short- and long-term ones (though many of us would call the immediate syptoms fatiguability, not...

He had a brief cameo in a quite good feature on Long Covid. They interviewed a couple of affected women who came across well but also illustrated that Long Covid has the same presentation problem as ME: they just looked way too healthy to garner the sympathy vote. Not meant as a criticism, just...

I made my comment in the context of some people on all sides aggressively making very definite statements such as Long Covid is or is not ME or that all PVF is or is not ME - when really we have no idea what's what except that we're all ill and it's high time we had a proper and open-minded look...

"Accelerate Post-Infectious Research" I like the general terminology "post-infectious illness". Better than arguing over what's ME, what's Long Covid, what's CFS, what's PVS, etc. We know so little about any of it or how to tell one from another. Let's have some decent, large longitudinal...