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I agree finding good people is key and puffing-up undesirable. Maybe my terminology is not a fortunate choice. I still think there is something to discuss with Sonya here. I found a BBC article "Treatment changes urged after ME patient's death" which summarises questions arising from the...

My thoughts turn to Maeve and what can be done to prevent this happening again. The medics responsible for Maeve apparently had no idea how to interpret and apply the NICE guidelines for severe ME in a way which seems reasonable to us, even though the information about severe ME is available...

OK, there was no well gap, but it is not simple. This is how it went with ACAI (atypical chronic active infection). ME began during an HSV2 infection after prior EBV, 4 years before. The initial symptoms cleared up but while I still felt post viral weakness from the first episode a second...

Sorry about the delay, I had to rest before trying to reply again. I thought maybe I should respond to this FYI. I hope by now you know I mean well. Since you don't have ME and (I hope) are recovering post covid, plus not everyone with ME diagnosis necessarily has the same condition, its...

Which is a worthwhile achievement and considering timescales, since the discovery of penicillin was less than a century ago, we have made astonishingly rapid progress. ME is the next challenge. I have no doubt you must be right that we will find detectable differences between PVFS and ME/CFS...

I don't know, lets get that out of the way, but my intuitive feeling about this is that PVFS cf ME/CFS are not easily distinguishable because they overlap a lot because they both involve longer term immunological responses involving forms of inflammation and autonomic response changes. The main...

We live in the society we create. If we wish to live in a humane society and receive humane treatment ourselves then we must show humanity to others and make sure that humanity is the rule our governments follow. Ideally, for the record, people with ME should be recognised, supported and given...

The full guide mentions PEM in two places.

This was a really good discussion article, very clear message. ThereForME is gaining some momentum. Well done and thank you to everyone involved.

Thanks for your kind words. To criticise my own post though, I added strikethrough and rephrased one sentence to hold myself to a higher standard because I used the phrase "self assembly" a bit too loosely, as it is by convention associated with structures like tubulin and actin which do form...

Sorry to hear about your daughter OP @FStevenChalmers hope she is improving. re: "facts which make this wrong", agree putative mechanisms provide models which can be a worthwhile muse. Not qualified to comment on electronic analogies. With this dandelion idea I find myself objecting to radical...

Well... the cycle of migraine bouts which inspired the OP seems to have broken, that is the good news. I think this is mostly due to a new infection becoming established as the dominant recurring virus of my collection, as I now have a cycle of URT (upper respiratory tract) infection with runny...

This has come up in my feed as an article in Science Alert optimistically titled... https://www.sciencealert.com/we-may-have-found-a-target-for-treating-the-fatigue-of-long-covid tell me about it !

In relation to this, an article on bicarb supplementation by athletes caught my eye, as the purpose of this is aligned with Dr Cheney's premise that cellular proton production in metabolism is buffered by blood bicarbonate. From baking cakes to breaking records: the rise of sodium bicarbonate...

Interesting first pass study suggesting subtypes based on changes to neurological structures. Requires replication to be sure and corroboration by other studies like Decode ME. Diagnostic criteria once again proving imprecise. Meanwhile methodology has no standard. Even if the reported...

I meant the quicker the tipping point is reached, where PEM happens as opposed to getting away with it. Though that said my PEM does not always behave the same. The other day for example I had what I think was PEM headache on waking the day after 20 mins weeding my back yard around 4pm and the...

Well that is a trickier question than it sounds, opening as it does an epistemological can of worms but on a walks-like-a-duck experiential basis... The evidence for throwing into the ring for consideration the idea that the anabolic process does not seem to happen normally after ME onset is...

Colour me boggled. It is in the nature of any sensation that it is a neurological signal. Non pathological sensation typically informs one about a sensed reality. Question is, what reality do the sensations of ME report? My circumspect guess is informed by observations regarding my own...

Not sure how to help wrt Cochrane @Trish but being horrified by the paper and its conclusions I thought I would chime in with some generalised flaw spotting. Curious about cohort selection, I noticed, under Methods - Recruitment paragraph, they used Fukuda criteria which do not require PEM as a...

Slow breathing was also recommended by Dr Paul Cheney. His working hypothesis was that it increases the CO2 content of the blood lowering pH, which paradoxically favours oxygen desaturation at the tissues meaning you get more oxygen transferrance the more CO2 is present. (Same idea as breathing...