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Another thing that happens in MS is that many patients initially have the relapsing-remitting form of MS. This often changes into the secondary-progressive form after about 15-20 years. Another kind of two peaks pattern. This would support the idea of increased susceptibility to certain...

Finally finished watching this. Expanding a little on @Trish's summary. Parts of the video are very interesting. Annoying though: camera is angled so the slides are cut off so only the left edge is visible. Was anyone from here at the talk and took photos by any chance? The first 40mins or so...

At the risk of repeating what others have already said in this long thread: This is a persistent fatigue study, not an ME or CFS one. Oxford, 'tiredness' instead of PEM etc. As a persistent fatigue study it may well have some value and for a persistent fatigue study using Oxford criteria makes...

Yes, JY clearly stated that the neuroinflammation he found wasn't the 'start' of ME, he doesn't know what causes said neuroinflammation in the first place. There's another take on neuroinflammation discussed in this thread...

After trying to skim read this article I was forced to diagnose myself with an acute allergy to the word 'stress'. This really ought to be added to the list of possible ME symptoms. Like for ME, there's currently no cure for this allergy but symptom reduction may be achieved by placing heavy...

Bummer. Sneaky!

After a quick scan of their website (https://solvecfs.org/eligibility/) I wasn't clear about whether the You + M.E. registry was a US or an International initiative so sent them an email enquiry. Here's their reply: International. Pre-register here if interested...

Good point @Michiel Tack. A clear definition of pacing is important. I've encountered too many descriptions of “pacing” that on closer analysis turned out to be forms of GET. Very confusing and misleading. One issue I have with this paper – though overall it's not bad - is that it gives the...

Aaarrrgh!!! Sadly nobody here will be the slightest bit surprised that there are doctors who insist on treating physiological symptoms as psychological and who consequently refuse biomedical investigation and treatment. The reported cases are particularly appalling examples; sadly even that no...

Before thanking anyone else I'd like to thank a certain very determined dog here, and very loudly, too: THANK YOU @Webdog !!!

A few thoughts and questions on the presentation: Question: Does anyone know if there is, or will be, a paper published about these findings? They found quite a number of mutations that were more frequent in patients than controls. However, numbers were low and I wouldn't be surprised if some...

The video mentioned in this other thread by @BeautifulDay may be of interest to anybody interested in genetics and mitochondrial dna...

Recording appears to be on Facebook now. Haven't watched it yet but video started playing ok after a few seconds of a confusing message saying live stream will start soon (confusing because live stream long past).

From the MEISS December newsletter (bolding mine). Not exactly sure what it means but it appears to be saying that currently ME patients are not eligible for home help? Unwieldy site but might be worth adding a few ME-disability-specific suggestions, just to get ME on to their radar as a...

They have my data already. My physical location and my ME severity prevent me from participating in most research so contributing my dna data is one of the few things I can do. I would like to encourage everybody here with dna data to consider contributing their data, too, obviously after...

First reaction: :wtf::banghead::mad::cry::sick::arghh::bawling: Second thought: If they managed to get Work & Income off some patients' backs they may actually have done some good after all.

Thanks @BeautifulDay for sharing with us the results of what must have been an awful lot of hard work. I do hope somebody picks up on it and incorporates it into a larger study. Do you happen to know if any of the teams currently hunting for ME-predisposing snps are looking at snp combinations...

For example what health effects, if any, being a chimera might have. Chimera meaning having different DNA (ordinary DNA, not miDNA, I believe) in different tissues. It definitely isn't very helpful when trying to prove you're the mother of your own children...

Personality types turn up in the most unexpected places, in our local farming paper for example. In summary the study reported on showed that curiosity about a new object is more likely to occur if it is directly preceded by some nice food than by standing out in the rain. Not only are we...

This is almost the most interesting part of the study: a chronically fatigued non-ME control group (CF/nonME). What an excellent idea! If only more studies would do this. And the result that the CF/nonME patients were close to healthy controls gives weight to our claims that CF and ME are very...