For successful management patients need to accept and accommodate their disability, focusing on what they can still do instead of lamenting what they cannot do.
[CBT & GET] should be considered for patients who are willing to try them
Yes, the problem is entirely with the attitude and beliefs of silly foolish delusional patients. If they choose not to get better, what blame can we objective caring clinicians expect to bear?
Sleep disturbances should be aggressively managed with relaxation techniques and improved sleep hygiene (see table fibromyalgia) can be treated using a number of medications such as pregabalin, duloxetine, amitriptyline, or gabapentin.
Physical therapy is also often helpful.
And the evidence for all that is...?
Nothing has changed. The psychosomatic club has destroyed medicine's capacity to deliver ethical, effective, science based treatment for us, or even admit that they don't have any.
DId they REALLY use the exact word 'lamenting'????
This is weird because the phrase before that seems piecemeal with other bits ie like it's been 'cobbled' and isn't necessarily entirely intended to denigrate, even if it actually does. And the advice isn't at all helpful. 'aggressively managed with sleep hygeine' is perhaps the quickest way to finishing someone off in my book. But the person writing it doesn't seem to realise how harmful this is to the point of striking terror into someone with experience and not sounding like someone 'must really care to use that phrase'.
It depends on the day but when I read or hear (which comes with the context of the person in front of me) something like this it is often difficult to tell the difference between whether someone is being a deliberate bigot - a la the ideas of BPS and idea of certain organisations wanting to just ensure that those with ME/CFS are effectively 'badly treated by all' - or just stupid/deluded and they genuinely think they don't have bad intentions but can't be arsed to spend more than two secs of non-thinking to put down what are actually tropes but they soo stupid they think it is advice. Words like that are so ill-thought-through politically it is either someone believing they have the backing of power or are just so slapdash they don't notice what in an email they'd have spotted in an instant was a wind-up.
It smells of 'leakage' of absorption of the bigotry sold to every man and his dog by certain proponents who should be nowhere near any healthcare or profession with responsibilities or the vulnerable. Sadly these laypersons don't know that hatred is what they've been sold., and that there is no 'care' behind it just like calling any other minority-hating 'because we want to help them be better/less whingy'. It's so worrying the BPS con of concealing what in my opinion can be categorised as a form of abuse when you look at the totality of their 'how' (particularly when you consider coercion, consent and removal of voice/testimony re: harm involved with their attitude and propaganda) under the term 'help' and people never ever interrogating these terms and what it consists of. 'don't listen to them when they say it hurt them' should be a massive red flag.
I also think sadly we need to tackle the 'CBT-fake' 'coaching attitude' (which isn't what CBT was
ever supposed to be - it was supposed to be about someone mapping what a condition is, not encouraging 'any old encouraging and motivating and coaching of the disabled'
because they are stupid and just need jollying which is what certain individuals have turned it into aka bigotry-selling/making bigotry and coercion acceptable).
Yes, advice like someone who knows sh***-all about wheelchairs suggesting to the person who has been in a wheelchair all of their life very successfully 'have you tried just going at that kerb a bit faster'. And stupid and arrogant and bigoted like thinking that when said person looks at you for saying it and holds their temper but just thinks quielty 'what is wrong with you' that
they must be the one that is intellectually deficient 'because their legs don't work like yours'. And thinking because they said it with enthusiasm, having spent two secs trying to think of something to say 'with positive intentions' that doesn't mean they shouldn't be red-faced and shocked at themselves for being so darn stupid once they heard it coming from their own mouths. This is what shocks me about the ME/CFS stuff, how most people who one second are normal and clever can - I'm guessing sadly from their profession it has been encouraged - inadvertently give out plain crap advice (even advice nothing to do with the codnition but the bigotry, without knowing the context) and the power differential is such you have to politely not say 'thanks for that, if I followed it then you'd screw me right up, why would you open your mouth on that serious topic without sitting and thinking so you knew all of it - who butts in when they know nothing like that?'
I do think that we shouldn't have to be polite and tapdance around plain tropes and bigotry. Or made up stuff that was always wrong and people deliberately dallying in changing it, just to be spiteful at 'being told'. But somehow we also need to try and gently without getting shackles up in the few 'goodies' start to show how they've been inadvertenyl led down the garden path and the habits they need to get out of. I think there is proper disability-training-related type stuff here that is specific to our area mainly because of the bigotry bred into it as advice but also the really poor predecessors who've been involved with it and the areas people look to grab 'ideas' from.
Sadly there are also those who trusted the person who told them what to write wasn't this. I don't know what you'd call them but it needs a different approach because they didn't know the type of numpties there were out there necessarily.
I also think - some days - that maybe if we all managed to get together and (here's the catch) be 'well enough' to nail the withering 'this is just plain disrepect, and clearly bodged and made-up, has anyone cared to check it isn't nonsense?' and provide notes of better language, and a long list of what is inappropriate advice and language, then maybe some of them might be embarrassed. Because I just think sometimes it is laziness. An illness noone really cares about in a lot of these organisations so they let someone just bodge any old thing together in half a day from old slides being tweaked.
I mean that's what BACME is isn't it, albeit they've put a lot more effort into their manifestos now trying to pretend their is science nonsense 'because they feel defensive' and 'don't like hearing they are wrong'. Sad isn't it that noone puts any effort into learning, or just getting a job in a more appropriate area for themselves. You know, doing the right thing. Like many of us did or do in our jobs. But if we can convince those around them with a 'don't be a bigot' campaign of some of the worst tropes and disability-related awful things in a way that makes it obviously laughable and awful to those who had no idea this was going on, then that might be the only way we start to find that 'norms' work in our favour and make them feel like they should be ashamed instead of trying to stick it on us?
