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Oh @Hutan, how exasperating that must have been for you to sit and listen through that! But thank you for reporting and venting. Your venting makes a lot more sense than any of that earnest personality type babble. And if the person who challenged that personality type babble at the meeting is...

Hmmm, confusing. I do have an annual seasonal slump when I crash more easily and am overall more sluggish and malaise-ish but the timing is different from the others here. For me it's the winter to spring transition (starting late August/early September, Southern hemisphere). In the past I...

Aren't there some theories that in ME (or was it POTS?) the sympathetic-parasympathetic nervous system balance is skewed toward the sympathetic? And that stimulating the vagus nerve stimulates the parasympathetic side and so may help to re-balance? Or not. I don't recall any hard science on any...

Must remember to try that quote. Probably more effective than my usual strategy of launching into a lengthy explanation of aerobic and anaerobic and cellular energy etc etc which always results in the listener's eyes glazing over within 30 seconds :D Nice and clear article. Edited: spelling

Not sure whether to laugh or to cry after reading this thread. Glad to hear there's some sense in the video (haven't watched it myself) because the website and blog are a right old misleading muddle of ignorance, patient-blaming and false promises. Probably all unintentional but that doesn't...

Not sure anymore what I based it on but my interpretation was that they were looking for any mutation that could significantly inhibit IDO2 because it's the inhibition of IDO2 that sets the scene for the trap, not what specific mutation “broke” IDO2 in the first place, just the fact that it is...

Another effect mentioned in the talks was that kynurenine could end up too low and that could also lead to all sorts of downstream symptoms, for example kynurenine is a precursor of NAD+.

Sadly the 'viral reprieve' experience is not universal. I have only caught a single virus since falling ill, not sure if it was a bad cold or a mild flu. Anyway, it didn't make me feel any better and, worse, it tripped me from very mild to moderate-severe. Now avoiding sniffling and coughing...

Exactly the same here. Then, after a couple of years or so, the fainting stopped and the postural orthostatic tachycardia started. If OI and low blood volume are linked, what about POTS and low blood volume? I'm speculating that I first got low blood volume, this lead to OI, which finally...

She is and she has :thumbsup:

Thanks for the summary @Hutan. Sounds like it was vintage Ros. Ros told me the very same thing more than 2 years ago. Here's hoping (though I don't have much hope of meeting any of them anytime soon, our local rural practice seems to attract GPs at the other end of their careers).

Used to be most like option 2 for many years - interestingly I was (mis)diagnosed with MS for a good part of that period - but the last few years it's been more like option 4 so chose that.

A very good question indeed. It would seem such a comparatively cheap and simple matter to replicate those studies and know one way or another. Does anyone have any further information why this line of enquiry was dropped? Were the original studies badly designed/reported and not as conclusive...

Cross-posting an extract from a comment I made in another thread, members only, because of the link to the metabolic trap (https://www.s4me.info/threads/does-being-in-more-in-daylight-help-your-symptoms.6381/#post-116102). Recently I accidentally stumbled on an interesting connection between...

Has this been posted? Not about ME but 'chronic fatigue syndrome' gets a mention. Viruses Under the Microscope, by Gunnar Bartsch, 09/14/2018 https://www.uni-wuerzburg.de/en/news-and-events/news/detail/news/viruses-under-the-microscope/

Given that most thought processes occur below the conscious level a questionnaire to elicit them seems... questionable. To say the least. Maybe they should ask patients to make puns instead. This appears to be a more accurate method as shown by the overreact/ovary-react pun on the poster...

While it may not be ideal I think the cuff test is worth pursuing, for two reasons. 1) It's something that can be used on patients too severe to ever get near a CPET. 2) It measures something: resulting miRNA patterns differed between ME patients and controls and, if I recall correctly, also...

"Ovary-reacting???!!! :woot::wtf::arghh::banghead: Read the whole post by ISHO (In Susan's Humble Opinion) here: https://ishoblog.com/2018/10/18/pass-the-snuff-and-loosen-the-corsets-theyre-back-to-researching-hysteria/?fbclid=IwAR3auNOacrDAvo08nkuRdpYynFghkQe_3kFphx5Amb-C9XoA8ygVh4ulxz0

Do report back if you can. And if you get a chance to ask, I would be interested to hear if Ros knows of any younger doctors coming through with a special interest in ME who may one day be able to fill her place.

As a general rule of thumb, ref is the original allele and usually the good one, and alt is the more recent mutation and usually the bad one. But, as I said: rule of thumb only, plus applies only to bad (pathogenic or risk) mutations. Many mutations don't do anything much (benign) so there it...