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Seems to me the same faulty logic based on linguistic similarities that equates the symptom CF with the illness CFS is happening all over again with PEM: the symptom 'post-exertional fatigue' (aka exercise intolerance) is confused with the 'illness' PEM. Of course exercise intolerance can be a...

Beautiful and very moving!

I think what he means is that for research purposes it's important to distinguish between a patient with ME, a patient with a primary psychiatric disorder and a patient with possibly both. Otherwise you end up with muddled data. Obviously it's also important to distinguish between those in a...

Totally agree with the gist of the interview: we need good case definitions to get good research results. No argument. But there's a very strange statement in this paragraph (bolding mine): This is effectively saying that “about half the people with a variety of medical and psychiatric...

This is what I hear from friends affected by breast cancer, too. First they're made to feel they brought it on themselves by stressing too much. Second, they are made to feel guilty if they don't meditate, raw juice diet, positively visualise healing, wearing make up to make themselves (more...

Would this is be the 'metabolic trap' discussed in these threads? https://www.s4me.info/threads/omf-funded-research-a-metabolic-%E2%80%98trap%E2%80%99-hypothesis-for-me-cfs-dr-robert-phair-march-2018.2969/...

Ok, so it's in a zebrafish, plus the technical description underneath is way over my head, but it does look stunning - and kind of exhausting, the immune cell darting frantically hither and thither trying to mop up all the blue (dyed) nasties. No wonder immune cells need a lot of energy!

This doesn't give much confidence that they understand the difference between 'chronic fatigue' and Chronic Fatigue Syndrome. A quick scan of the info hints at open label, no control group, and self-reported subjective outcome. I'm not holding much hope for a sensible outcome.

Do you think that maybe your impression is more due to the tone of the discussion rather than the substance? I, too, often get a first impression of instant dismissal in some of the threads here. Then, after taking a deep breath and reading more closely for substance, I find the critique is...

Very important, that bit. Seems to have been swamped a bit lately by the – highly justified – critiques focusing on subjective outcome measures in open label studies and changes in outcome measures part way through a study. So it's good to bring it to the forefront again. If you don't start with...

I have a similar 2-stage response, with stage 2 being much, much worse. I suspect you're right: research results will differ dependent on when measurements are taken in that sequence of responses.

Constant. Same frequency as a mosquito and about the same volume. Volume doubles after meals, no idea why, and also when ME worse. Not sure when it started but don't think I had it before ME.

A little surprised by the level of cynicism in this thread. Granted, a solid dose of skepticism is in order. I, for one, wouldn't put money on a positive outcome of this trial. But... But there are positives here. Given the available info – really only Cort's blog – the trial design will be...

A case of the good, the bad and the ugly. The good: For those of us capable of being upright for a few minutes at a time this is actually reassuring. We don't need to worry about doing 'proper' exercise (so stop pushing us or making us feel guilty). As long as we space (pace) out our normal...

Probably overused but this quote fits well here: "First they ignore you, then they laugh at you, then they fight you, then you win” (Gandhi, Klein)

Does anyone understand the “Bacterial Abilities” results, specifically the "phagosome" which for me has become significantly elevated since becoming ill. Before it was very low at 0.28x compared to all samples. The two tests since falling ill came in at 13.26x and 15.73x. I actually contacted...

Definitely good news that they're doing follow up work. Also think it's good news new researchers are showing an interest in the field. Let's welcome them rather than write off their work before even reading it. I'm sure there are wishy washy PhDs out there but I don't think it's fair to...

@Kalliope @Valentijn Found out some extra info re publication from Prof. Tate (one of the PhD supervisors, the author of the study being currently away). ETA: Have permission to post above quote.

I agree. Especially since the supervisor is Prof. Tate who, I understand, likes to work together with Dr Vallings to make sure his study participants really do have ME. So if that also applies to Eireen Chariss Sweetman's present study that would be a good omen.

Good summary @Trish That's about as much as I could fathom. Two points from the second article: 1/ It's possible that what the researchers' “thermometer” (the fluorescence signal) measured was not actually heat but something else. In which case it would be important to figure out what exactly...