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Me too! somewhere I can vote for that?

Not sure where to put this as it’s very much about the NZ system but it’s not specifically about ME/CFS. In fact, they might quite definitely exclude ME/CFS from the definition of “rare disorder” (on the basis of syndrome vs disorder definitions) but I don’t know...

thanks :) just got it out of the library now

Took a glance at the abstract. Still not clear what they mean by IBS-like, given that there are a few different types of IBS and each person has a few different aspects to their symptoms too. (I can see why you might use it as an abbreviation but have they defined the specific symptoms they...

There’s also ‘cause of death’ decisions - most death is multifactorial if you really look at it. Deciding which ‘cause’ to highlight

I know you said you react to a lot of things but, just in case you didn’t know, most dry shampoos (or eco ones anyway) are based on cornflour. I imagine you could ‘just’ powder your hair and then brush it out. Probably in stages. Another idea I’ve found works for my dog (but definitely not for...

Whether or not the analogy stands, perhaps we should talk about whether to ‘come out’? I’m not ‘out’ in any official sense because there is no treatment, I am fortunate enough in my history to able to support myself (so far), and being officially health impaired would only throw up barriers to...

Am about halfway through watching this. Lots of good tips, mostly for the pwME who are able to be active about the house or more. (Not for severely affected. More for newly diagnosed and people getting their heads around pacing.) I realised that I’ve been doing a lot of the tips already and...

Just my casual (while listening) questions: Peripheral resistance (what causes it? - greater in ME/CFS cohort) (Later: oxidative stress?) 72hr retest shows improved power output (whereas 24hr & 48hr show reduced) ...but the starting, baseline test, also started lower for the 72hr group? If so...

Thanks for posting @Ravn, just what I missed! Am at 8 min and not sure if I can keep watching it. (Thus no ‘like’ for the post as I can’t recommend the video). Will maybe try again later if no one else summarises for us. (ETA: cross posted with above - yay! Someone has! ....wow, took me...

wasn’t able to make it. How’d it go?

Going back to the original question, sorry to jump about: I’ve thought about this sort of thing quite a bit since illness. There are all those stories about people with end stage cancer or parapegics or .... etc conquering the obstacles and climbing to the peaks of mountains (both figuratively...

Choose one for each year? Reinvent priorities each year.

I found PEM quite understandable as a concept, especially as I realised (from keeping records) I did indeed have a 24hr delay. It made the apparent lack of any cause and effect pattern start to make sense. All I actually needed was to hear about it. (...and then I had to get over my devout wish...

Thanks Louise, whoever, wherever you are.

In order to be diagnosed, you have to be unable to do (or maintain) half the activity you’re used to. And that’s the mildest end of the spectrum. Try living your life, or doing anything at all, by skipping two of every three steps in every activity, every moment of every day. And that would be...

All of the above. ...and sometimes I mistake indigestion for hunger. (Especially as some forms of gastro discomfort can be temporarily eased by eating. So I drink something and wait for a bit to see.)

Thanks for this. Says a lot of things that aren’t said enough. About relapsing-remitting conditions, about complex feelings in a remission (complete or partial both), and about how the dominant narrative of fighting and beating illness (something like breast cancer) forgets how ubiquitous is...

This preprint suggests that heat treatment (70°C) can inactivate the virus but that it’s much faster if the droplets are enclosed (in a vial, not an oven) ?? https://www.biorxiv.org/content/10.1101/2020.08.10.242206v1 The point made is that all factors need to be specified before we can say how...

It looks as though there isn’t new research on surface transmission, only critique of the original March (New England Journal of medicine) study: that the test sprayed more particles of virus on each surface than a sneeze might and that therefore the viral equivalent of half-life might be more...