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I cannot answer any question regarding how those grants work, but I wanted to mention that I would not be inherently concerned by the sentence saying they want to evaluate therapies - I imagine the intent behind this is to formally look at several commonly used modalities and look at the...

At least they make it clear they are all about the psycho-spiritual aspect of mental health offering education, not the somatopsychological aspect of playing bingo when naming studies.

It is incredibly telling that he: a) Seems to think anybody knows their daily PEM threshold on any given day (as if that wouldn't fluctuate wildly enough to leave people guessing every day) b) Seems to think gradual increases are beneficial or even possible (as if it was known to be inherently...

For roughly the first decade I would've said yes (same exact thing as in the OP, my GP actually did call it chronic mononucleosis - but then again, he was not what we would think of as ME-literate), then everything changed subtly over a period of several years and how I am now barely resembles...

Does anybody know why Prusty's talk is unavailable on youtube? It was the one I really wanted to rewatch because It was way over my head... Both Scheibenbogen and Prusty touched on problems with IgG in some pwME and iirc there were a couple small & inconclusive studies from years ago on...

Probably? English is hard nowadays... I meant to say something along the lines of 'taking it apart on an intellectual level'. Sorry if what I write is weird occasionally, it is like not all the words I once knew are always available and I lose sight of what I've written half a sentence ago due...

I've actually gotten around to really reading the first bits instead of using it to look up references and I must admit I do feel compelled to correct myself. When the book first came out I skimmed the entire thing and read some parts I was particularly interested in but there was no way I was...

I hate that we apparently have to add 'personalized' to the long list of words that now mean something in between 'making it up as we go' and 'faffing about'. And possibly 'well-trained', but this may be one of those overly specific phrases where they don't explicitly state to what all the...

I just don't... get Jen & Julie here. JE's position, as far as I have understood, is basically that the bias in selecting patients for the studies in question will be insurmountable the way everything is set up. Which makes sense to me (but that doesn't necessarily mean a lot, I have no idea...

Isn't it actually impossible to create reliable evidence that treatments cause harm (at least intentionally) because it would be unethical by definition to do the studies to gather said evidence?

Holy nonsequitur batman, I realize people who are not exercise physiologists tend to occasionally oversimplify things from that are but this is on another level. It is a pet peeve of mine when people in the broader medical community think everything related to training is obviously trivial...

I think this actually makes for an interesting talking point that is a bit... well, meta on where and when opinions and the way different people value the same situation become invalid. Those BPSers are usually very good at being right at the edge of what is easily tractable on a factual basis...

The point that FII needs to be taken serious is a valid one in general, and it is valid to potentially over-react to every suspected case of FII since it can be lifethreatening. Since it is so rare no one should ever have a good enough experience base to be able to tell when concerns in this...

Personal: Thank god you can speed up to 2x on youtube vids so you can get triggered by her saying 'CFS syndrome' without investing more than 10 minutes. RIP in peace my poor nerves. Cliffs: Claims to have found the cause of ME/CFS and developed a 'healing method' for it (and every single other...

What @Trish suggested sounds like a really good idea to me. I hope someone is up to that! Thank you again for your insight! It is quite frankly really good to be able to rely on you all the time... I personally would really not care if it made me vomit for an entire week after taking it...

This seems pretty interesting, especially with the 70% still in remission after 4 years. I guess we should keep in mind that the unblinded Ritux trial has let us down before though. Isn't this a pretty high baseline for pwME in general? Iirc 'we' should score roughly half that, but maybe I am...

Could you expand a bit on what makes you say that? Less for me personally (any explanation will go over my head anyway) but more to make your stance easily communicable to people who will inevitably say 'well Prof Harrer says one thing, Prof Edwards says another, I will go with the guy actively...

Well, we had Sir Simon explicitly tweet out that he doesn't have to self-isolate because he doesn't have symptoms after his wife got sick. And somehwere at the beginning of the latestet twiv (#591), unless I completely misunderstood that part, it was stated that we can be pretty sure by now that...

Sure, all the time. And by 'all the time' I mean I take LCF 'everyday'... I remember to take it so realistically every 2-3 days and Ribose on demand whenever I feel like it should help. I guess benefits are mostly additive, although in a way, they are somewhat counteracting each other since LCF...

For what it is worth, L-Carnitine Fumarate is probably my one Supplement for the lonely island. 500mg+ on an empty stomach, makes the difference between being able to read a bit and not at all within half an hour or so on average days. Higher doses tend to come with unnervingly severe stomach...