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A year or so ago there was a big push of the LP in NZ. Interviews on highly regarded programmes like Campbell Live and on RNZ. Not specifically targeting ME but all sorts. I recall a chronic pain doctor giving it the thumbs up. Gave it a lot of credibility, unfortunately. And every single one...

Nice idea @Hutan. Always impressed by how much news there's coming out of Scandinavia. I fear there'll be a lot less from NZ but then Scandinavia spans several countries, NZ only the one. Incidentally, do we have any Pacific Island members, resident in NZ or the islands? Would be interesting...

Excellent initiative by the patients and the newspaper. Having a long list of short patient stories – instead of the usual one or two longer stories - is quite effective I feel. Instead of there being one or two unfortunate individuals readers briefly feel sorry for before moving on, here...

Articles about ME sufferers and about Professor Warren Tate's research team at Otago University. http://www.thestar.co.nz/digital-edition/?edition=STR_2018_05_10 (pages 22-23) There's an error with the digital edition and page 23 doesn't show. The Star has kindly sent a scanned image. So read...

Well deserved! Unable to take in much of what you posted but I can see this is: 1) very important, and 2) an awful lot of work you're doing. So just wanted to thank you and let you know how much that work is appreciated.

https://www.ncbi.nlm.nih.gov/pubmed/29100842 (paywalled) 2018 Jan;3(1):17-24. doi: 10.1016/S2468-1253(17)30338-2. Epub 2017 Nov 1. Faecal microbiota transplantation versus placebo for moderate-to-severe irritable bowel syndrome: a double-blind, randomised, placebo-controlled, parallel-group...

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...