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Over there/in other countries did the medical profession (I don't know if they still do) write patient notes and medications etc in latin? I assume here it is/was specifically so that patients couldn't see what they were saying. Of course this is what you get told when like me you are being...

That's interesting, but nope nothing like my PEM, which has been far more like you suddenly get eg glandular fever. In the earlier years the glands would swell. Agonising leg pains, like something has gone into overdrive there. Need to wee a lot. I still get rheumatic aches everywhere. It feels...

Some of it might be good GPs etc checking it isn't something else, but given sending people away to see if they come back has been instigated for so many years now as some silly-minded way of 'cutting the cost of prescriptions' then I suspect there is a pathway under this. From the outsider it...

this

that's the safest and most appropriate one, and also closest to an actual 'medical' appointment. ie pointing people to how to use such tech but without the privacy issues of expecting them to download their intimate what they do every minute of the day all year round, bodily stats and all sorts...

they've separated cause and effect (immediate and delayed). And the exact thing that is not required in ME/CFS is for someone to aggregate large groups in things like activity, adn then symptoms in order to disappear the exact patterns that have been shown by all the good scientific research...

If they aren't collecting clinical data, or heart rate in reaction to any of these 'days' are they really looking and interested in having their 'rehab beliefs' researched to see if it really makes anyone better health-wise or more ill? Or is this a rehab-based measure (PROMS are used by...

Ps the PROM also isn’t just 20th century but only used to measure ‘delivery’ and not impact or whether the treatment works in areas that were never proper clinical biomedical conditions - mental health and where a hip replacement has been outsourced and rehabbed seem to be the examples all of...

But not cherry picked and separated data - the reasons the trackers have become of worth is when eg with @MrMagoo recebt example they’ve been trained to learn peoples bodily reactions aka threshold and are describing these with ‘being in the red’ asking someone to only report the what they did...

The issue no one talks of is coercion and all of the forms that come under this (social pressure , culture, all these links to schools, benefits, employers everything on which someone’s ability to live relies) And these measures not striving to protect safety of those who will be handing over...

me too also very much depends on stage of where my health is at (on way down then I don't think so - by which I mean 'you've done enough normally over preceding 6months + to really whack youself with a deterioration that will then slowly occur over 6-12months or more)

Me too on the leg-focus particularly as part of PEM and if I've had my legs down. I find this one really quite interesting. Does it help with cognitive type symptoms too? I'm already thinking what 'other' measures I'd like to put alongside orthostatic I'm not sure it would necessarily be one...

Do we think it could help there? Certainly if so and the dose could be got right to minimise risk then I agree something with measures in that would surely be amazing?

Informative that one - the mode of learning chosen indicates to me that it is either someone's beliefs (they won't do it, worse assumptions that are incorrect on people 'learning') or more likely it is more important to be able to confirm it has 'been delivered correctly' than 'it has gone in'...

Of course the first question this brings to mind is how much funding is being given to biomedical research into this area vs 'treatments to cope' compared to 'other' post-infective conditions? And then I realise that viagra exists

I could say so much about this issue. Sort of leads back to an attitude of seeing people as objects like the old days circus exhibits to be described, vs Oliver Sacks style descriptions that could elicit findings that help with solutions too. And some parts have been better/worse than others...

I'm not sure. That would be an interesting one to see, probably, but to different degrees. I think a lot will be in 'rolling PEM' and I think boom and bust is probably something we need to break down to different things (like there is a difference between work week then weekends and evenings...

Malaise is good in its precise definition, but as with everything else laypersons and BPS have warped that into something very minimised. Worse sounds like trying to use a pseudo french term for how norms feel with a hangover, not too distant from ennui. SO I half agree and half disagree. The...

This second paragraph is really important insight. I keep trying to note every so often that we need to be emphasising that the key characteristic of ME/CFS isn't just PEM but the deterioration that happens if we cumulatively push our limits - ie try and 'cheat PEM' or 'manage PEM' or just plan...