You’ll find people in favour of literally anything, that’s why we do trials. And if the trials are negative, we’re not questioning the patient’s reality of being better (unless some form of gaslighting/brainwashing is involved), we’re just questioning their interpretation of the causal pathways. But apparently, we can’t do that.
The practitioners have to be comfortable with saying «I don’t know», and the patients have to accept that there are no treatments.
But we already know how to do this. People get told by doctors that they have terminal cancer every day. That their loved ones have died. That they will never be able to walk again. That they child will not reach adulthood and suffer greatly while they are alive.
We know how to deliver difficult messages, and we know how to help the people that receive difficult messages. But for some reason, society has chosen that it’s easier to pretend like ME/CFS isn’t a problem, and in doing so, they’ve put all of the hardship that they should endure for others, onto the patients that are already suffering tremendously.
The irony, is that the most difficult message to get across here, is that entire fields of work are probably useless or even harmful, and we’d all be better off without them. So society keeps playing pretend so they can still feel important, and they’ve worked their way into power so they can ensure it will stay that way for as long as possible.
I think we agree completely on this. It isn't helpful at all to give fops to untruths of any of these being anything other than harmful particularly given its an illness where we have a restricted envelope and we are explicitly damaged/played to more severe illness by people game-playing with our energy, so the 'just try doing this extra' is BS.
I just think we need to complete the message - where we can at least say that we know that for some reason there is currently missing the bit where there is sensible support / adjustments in order that what is being suggested by those who know can actually be achieved (reduction in exertion) and yes we need something a bit more substantive on research than the 'need more research' line.
Instead I remember being closed-down. Because noone wants to talk about it. So you get told what you implicitly knew (excpet hoped something would make it a bit better) which is that you body can't do what your committments require of you. But noone even writes a letter to allow you to change your committments. And all those around you just think what they want.
It's desperate even if theoretically you get the correct advice, because the environment has been so carefully constructed over the years for us that we are undermined actively from following it.
That's the bit where I said "We probably need to get good at working out how we can support people in those different natural reactions to that, and actually having practical support of some kind is vital to that too."
Ie I wonder if having whole ‘missions’ that eg a whole family and friends can get behind early on when you are in that phase of wanting to show support and do something stage. Even if it’s just having a list of definitely trustworthy research funds to donate to, so gifts made to feel like helping don’t go to things that will either be twisted or useless, having definitely good and clear messages of what family can do to help someone or nice things to say that aren’t putting your foot in it (get well soon when in a crash?)
Charities etc need to look at that practical support. We need to stop having our time wasted by those who dangle the carrot of there maybe practical support (ie not psych but writing letters for adjustments, getting other comorbidities treated, providing advocacy to access services needed to allow people more financial or equipment support) just wasting time for at best advice we can't get done on our own or someone just counselling us as if we just wanted to whinge about there being no support when the energy to say what we needed is now wasted by that person who never intended to help. It's quite scary how empty everything turns out to be currently.
Clarity supporting pwme on this issue of what people need to family, friends, employers is another thing too. So pwme aren't saying x causes y amount of PEM and being laughed at because someone is reading info based on someone with milder levels or chronic fatigue, or getting shoved into sleep hygiene when they are in PEM or needing large amounts of rest - or at all, because it is ridiculously harmful like GET.
This leaves people more open to these predators. And in particular those who are around those who are ill and can indulge in wishful thinking without being on the butt-end of the consequences (another reason why we need to be accurate and not do fops)
I noticed going into the Times comments that on one of the articles there is obviously an organised collective spouting the identical one-liners Garner and chums have been trying to make catch on in the last few weeks with their invention of recovery day. And all the inferences they use as ad hominems the latest seems to be some non-catchy 'biomedical hegemony'
I certainly agree with this statement banning discussion because priming those brainwashed to do the same to others seems to be a biggie.
