Generally good. Including some very explicit warnings:
But this is still no more than what the patient community figured out, mostly with help from pwME, within months. There is not a single piece of advice or information in there that was not common knowledge by summer 2020 in most patient forums.
This is not expert advice, it's generic common sense advice that anyone can figure out from lived experience, as long as they are not mislead by flawed "expert" advice saying the opposite of reality. Which is an actual improvement over misleading bigotry built on caricatures, but a dismal indictment of the medical profession's performance here.
However pathetic this step is, it really is progress. That's how far we are, when actual progress leaves us at the same spot we were several decades ago.
I was thinking this today and trying to work out how to get it across. The best I could do was thinking of Maslow's hierarchy of needs and that the new guideline is 'maybe' (if it is implemented) 'giving back' (because it is a reversal of what seems straightforward and patients have been reporting and many who don't bother to read up on ME/CFS assume goes on) the
'survive' bit in services.
ie physiological basic needs. If it were implemented to the max and covered those who were more severe or having to go into hospital and those scenarios where people 'fear for' because of various reasons.
But also hammering and targeting the bad things that are harming people, so sort out hospitals and other services knowing how ill people can get and what they might need, get the very severe tracked down and their care monitored, and yes any places where harms are still done e.g. the children stuff too.
You then have what 'cope', 'live', .... 'thrive'. These are all massive and given the misinformation needs to be tackled as well as health then scientific developments might be the quicker route for this/a necessary part anyway. We aren't even 'accepted'
I was sort of thinking of this when someone was asking about topics for yearly ME day type thing, and wondered whether we needed to underline by doing a 'this is the year of' to sort of show what a low base we are from even basic aims. Maybe it really should be 'survive' then proper biomedical research to give people a chance at anything else going alongside it (just likely for that to take a bit longer) - so a catchier name for survival (stop the harm) + research strategy.
For pacing to even have a chance of working for most ie 'make ends nearly meet on surviving' you need the little treatments that could just be OK'd for people to trial where they do little harm (like B12), strong and robust adjustments, services that get the level of debility so aren't requiring people to harm their health or do without (which harms their health). But also POTs stuff and hearing of people who need/are helped by saline etc. So it hasn't really caught back up to pre-2007 given the biggie from that was consigning everyone to be treated as hypochondriacs and stop the things that did work from being given out.
I'm all for preventing futile testing, drugs etc. but don't get why some things can't be tried given the desperate situation some are in where even if they lie in a bed doing nothing they deteriorate. It's cheaper than leaving people to rot too. There should be a proper confidential database too where people's conditions each year can be monitored and their suggested 'reasons' for any change or even non-change (like had this which helped, but at the same time exertion upped because of x) logged. Hence the clinics being so poor being a big issue as there is noone driving research or caring to listen to feedback from patients on what works and the illness is like from there for various reasons.
And research strategy of the proper type - including basically obvious stuff people assume has been done like annotating how many have what severity, level of debility and being able to describe PEM and how it works (many can only survive by going above baseline for basic needs to be completed then getting rest time to recover from PEM - if they are allowed it - then begin again, many don't realise they are 'in PEM' because daily life doesn't give grace whatever level you are at) so that future research isn't undermined by having a mixed bag of people who they can't log severity, type and stage of PEM as variables (that might matter) for.
