It's hard to know how widely held the belief is but my idea of getting some big medical guns to make a statement is primarily to convince people in the medical profession, since they're the ones likely to read it and the ones who don't listen to anyone else. ME/CFS has been swept into the MUS/FND bucket and stories from PwME about how they're gaslit and dismissed by medical professionals is rife. We have case after case of PwME in hospitals who have difficulty feeding being starved because of how their illness is viewed.
As with the general public, there's surely a mix of views among the medical profession but even if as few as 10% of doctors and nurses think that ME/CFS is all in the head, they're in a position to cause catastrophic damage to the lives of vulnerable PwME.
And it would be hugely helpful for many PwME to have such a letter to show sceptical family members and friends. In the last few days, one of the forum members has posted about appalling treatment from family members due to their belief that his illness isn't real.
The MEA was criticised here some time back about it's 'It's real!' messaging about ME/CFS, and I would agree that our charities shouting 'It's real!' is likely to be counterproductive - because they're representing patients, and if it's all in our heads, of course we think it's real, even if it's not. But it's a different thing entirely if highly respected people in the medical profession are saying so - and are doing so off the back of this new kind of solid evidence, if it really is that solid (which is my point of doubt here - I don't understand enough about this to know how solid it is).
indeed. If you have it long enough or badly enough then you eventually come across the 'moments of truth' where people's walking the line of hiding it as not being quite as insidious underneath as it really is comes out. The same people who keep up the facade of 'I just think stress doesn't help' or 'I don't think that it is just that there aren't any treatments yet' which are exactly the same things that those who
do get it would say slowly do let slip that sadly they aren't very nice and actually are using that to hide a really not very nice version of it.
But you have to be there when it happens and we have all probably had years at a time where we have wanted to 'think the best' of those same people who then eventually consistently enough do things that let slip how clear their orthodoxy really is.
I also had the same thing whilst I was stuck in the 'looking for the pat on the head' stage and 'playing nice' where I'd fall for the 'those who have seen it are just looking for the worst in people' rather than it being the case where they guy who is the lovely old gentleman who is always friendly and kindly suddenly finds out you have ME and realises they can say snide outright obviously grim things to you and that label means that unless you are recording them on video (and you won't know when the hit and run will come even if you could whip said video out) everyone will go into that misogynistic presumption that the person with ME must has 'misheard or been sensitive or it wsan't intended'. People like that count on that.
Once my ME/CFS became 'not invisible' even if I still avoided telling people whose business it wasn't what it actually was as a diagnosis, it was astounding the level of this behaviour I had coming at me. I remember relating to a friend who people you thought were good people now knew noone would believe me if I reported their 'seemingly out of character, but now what I get because they can get away with it' and was shocked that she got it when I explained.
That's what I mean I think by getting severe enough ME/CFS is like having a truth potion on who other people are. Because they start acting towards you how they've clearly always wanted to act outright knowing they don't even need to veil it because heck who is going to believe or care when it is someone who looks as ill (and therefore mad, not help by many HCPs are too stupid/been taught wrongly about a decade ago that cognitive fatigue is 'mental health' rather than exhaustion - and that one gets right up my nose as someone who did a lot of cognitive psychology, so yes it is stupid) as me reporting them.
Some of us get to see the veil come off. And strangely at the stage where it does there is obviously soemthing 'universal in what signals I'm giving out' because then it becomes a very common pattern ie all those who are that way all seem to start doing it just at a point where I got x ill and was suddenly more cast out of the bits of society I'd been in before than I had been, like leaving job etc.
And yes I know that most pwme who are less ill than I am and who are still in the phase where they have jobs or people who respect them etc so aren't vulnerable yet are just as bad as those who don't have ME on not just doubting the very honest pwme who are reporting it but gaslighting them. ANd it has been designed to be that way by the divisive messaging trying to divide us up in that way so that the more severe are really abandoned ironically by those who will many of them end up there themselves. Because it now probably happens to me most from pwme that they either outright minimise what I've just said precisely and accurately or say some justifying thing like 'must have had a bad day' as if it isn't a regular enough pattern, or 'really unusual because
I (as if they are exactly the same as me so that's an experiment) didn't get that' as if that's another way of them side-stepping saying they choose to not believe me.
It isn't
all of them that are like this, but put it this way I put some effort into finding those who aren't and I can at least guess at that maybe I can half-delude myself I can trust, and that wasn't easy. I had the same issue with 'friends' mind you of course. Some pretty shocking realities of who I'd been hanging round with for over a decade not realising what a bunch of idiot bigots they were until I kept pushing at them and refusing to 'drop being ill in their face' and do the smalltalk acting like I wasn't exhausted and pretend positive nonsense. And you get a sudden flip and reveal. The whole idiots who believe the placebo stuff from pop-psych seems to be one rabbit hole some of them were hiding in. And there is like this coercion that you are required to lie and only be positive about your life to certain people's faces which leaves rather little to talk on and eventually you feel pretty violated from having been forced to make something up or be fake positive.
So yes I think that there are many who also just think it is an attitude issue of making a big thing about something that is less debilitating and could do more on etc. too. Delude themselves with these wordings they slowly the first time gently and cagily say out loud and then it expands from there. And underlying that therefore is the 'mind' thing.
That's why the nonsense fops of 'had a virus but' or 'not
all psych' really dog whistles that lot. Funnily enough it is those who in their mind are obsessed with not letting others be lazy because they will pick it up, and it comes from people who I might have worked with at various points and can say for fact they weren't the workhorses as I was, so it isn't even a self-preservation issue that it started from. When I think back I might have had a few years when I was maximum 12-13yrs old when I thought like that para above of the 'maybe if they just see if they could do more' but was able to mature out of it. So imagine how shocked I was to realise I'd been listening to thsoe red flags from people with respectable jobs and just assuming it wasn't what it was until they expanded it further and slowly like a boiling frog to the point it was undeniable and unjustiable and unaccpetable bigotry.
And then I look back and realise what on earth was I doing or how coerced was I that I was listening to these escalating things for about 5yrs and having incredibly mean things done to me (as things escalated beyond the 'could do a bit more' in the context of 'another friend who has the same') because, for what I guess was actually no good evidence in them at all other than me 'looking for the best' in their statements, I assumed it must have been a bad day or they mustn't mean it because they apparently were good people as I'd known them for a decade. But no I'd just been closing my eyes to it now I've not just seen them but had them bang me over the head with such grim vitriol so they made sure I knew what they thought that it isn't just without doubt but eventually became them being frustrated that I wouldn't see what they thought and were actually saying and thought they had cultural permission to say.
