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I like it, its a good overview. Gone are the days of struggling to have anyone believe you when you say you have a recurring virus.

Even if I am not getting quality I want as much quantity as I can get. You only get one, if this is it then so be it, make the best of it. Theory being, research has got to get its act together one day and the longer I live the better chance I have of seeing it.

To explain my thinking in a little more detail. At the point where they start to say... I am concerned the quote above blithely assumes and overstates a paradigm which in the context of psychology can lead to concepts/wild hypotheses of hypochondria or even Munchausen's etc i.e. because of...

links to an article equating illness symptoms with attention seeking https://www.sciencealert.com/our-body-s-immune-responses-could-have-evolved-as-a-way-to-tell-others-we-need-help

and dont miss this bit looks like the BPS lobby have been busy in the Netherlands

Useful background info link, thanks. In that context FOMO (Fear Of Missing Out) is apparently her justification for being active when in pain. It is unkind not to be sympathetic to pain and I am sorry for her suffering but... ascetic approaches are not recommended because pain is a neurological...

If you access the list of speakers and their topics by clicking "view pass options" you can see that one of the topics is "Migraine FOMO: Are You Missing Out?" FOMO is a notorious marketing technique which I have encountered in other contexts, which raises my suspicion this is more about sales...

marketing the migraine marketing, now only $99

OK, I managed to hold it together long enough to log in and make a suggestion. Not a good day for me to be honest. Hope it is helpful. https://ninds.ideascalegov.com/c/idea/32743

Hi, sorry to hear of your situation. Unable to say for sure if it is the same as mine, but I hope there is no harm in discussing comparisons. Your observations of no infections are interesting but this is why I am concerned about subtypes as I very definitely have recurring viruses. Some...

Have you seen "Landscape with Invisible Hand"? Its interesting if you like that kind of story, worth watching if its free! (which it is on Amazon) My own view is it has to be both, because AI is just a tool which has been hyped. Even a spellchecker is a kind of AI. They cant work without being...

So logically we need to get data to improve research case definitions. IMHO we need better research case definitions because as the title of the thread suggests, research definitions dont agree with each other, so research papers are at the very least comparing cohorts selected by different...

Another angle we could try with this is start with big data which has self reported symptoms with fine granularity, analyse symptom distribution, create a new subtype for every different symptom combination, then count those belonging to each subtype and derive research subtypes with defining...

Yes, you are talking about a cladistic or classification key. As one would use to identify a bird in a field guide for example, via logical bifurcation of groupings based on identifying characteristics. With ME we could use a similar cladistic logic. If we list all possible symptoms we can...

It looks better today, now I can X it. I agree with the sentiment expressed 100%. I hope it gets republished. The Time article looks reminiscent of typical BPS antiscience to me and sounds outrageously luddite. The whole history of science tells us knowing is better than not knowing, because...

Yes, "grim opportunity", this is true, pathology is. Looks very good but for proof reading purposes, FYI re: layout, there are three spaces missing before the three links in the first two paragraphs of the penultimate section "Parallels with ME/CFS". First impressions etc. EDIT and another one...

I think this is a puerile hyperbolic dramatised interpretation of observed mitochondrial activity. Mitochondria have been symbiotic and more lately organelles of eukaryotes since well before the cambrian era, since some time in or before the paleoproterozoic era at least 2 billion years ago...

Yes, I was stuck with Loratidine for example. I took it in summer for over 5 years but it caused upper respiratory tract infection recurrence every year so I stopped taking it when I realised what was happening. So it was more than three years but is not ongoing. You could say the effect stopped...

I sent my second spit kit off, hope it works. Its my life's ambition to be a data point...

Turns out they were unable to extract enough DNA. I had better get spitting!