The point she is also surely missing here with her response (noting in agreement with
@MrMagoo as it being decidedly pass-agg), yes great, I/we can do FUNCAP through choice at home or whatever, but when referred to one of these services (that will still be stuck in the dark ages), there won’t be any choice in the matter.
And, inevitably, the people who attend these clinics will be the newer pwME, the more desperate for answers, feeling they have to do these things because their GP has referred them etc.
They won’t offer FUNCAP as an alternative, much lighter model, having opted for PROMS, as advocated by the (also stuck in the dark ages) MEA.
I despair.
@MRmagoo: Quite. It is the “tail wagging the dog” the MEA gave funding to Tyson and two NHS employees, to write something which will produce an NHS outcome measurement about NHS service delivery.
The patient is an afterthought.
Yep, they've taken pwme out of any right to have access to a health system with real normal clinicians of any type and replaced with motivators. As well as continuing to prompt stigma and suggestions pwme should be filtered out to a 'third service for 'functional/psychosomatic' people' whether it is a neighbourhood clinic or taking them out of hospitals into CBT/psych so that noone can access a doctor for diagnosis of anything else or real care or anything confirming what they have
And now this is about removing access that all other medical conditions and disabilities have for their disability to be defined and quantified using currently SF-36 (and of course medical clinical appointments from doctors who ask whether you are getting worse, if x helped and you know do a clinical medical assessment.). And the origin of the push for them to do this comes from this paper which was the arm of the PACE trial where people were in actual clinics Crawley et al (2013)
https://academic.oup.com/qjmed/article/106/6/555/1540077#203462012 which found 'treatment' did not improve physical function. And since that time, including in their conclusion, the focus of certain people has been to want to therefore stop measuring physical function, just the 'delivery of service' so that we can be defined as assuming whether their service was as directed and if it was then we must be fine etc.
SF-36 is currently not perfect but is the standard in populations in order to compare global measures of how people are impacted and seems to work all right at showing how debilitating ME/CFS is compared to other conditions.
FUNCAP is there for physical function and defining level of disability in the context of ME/CFS, so if she was trying to measure disability and not trying to hide it or disappear it then it would look-like FUNCAP
@Mrmagoo:
This has been bothering me
Yes, we are aware of FUNCAP. It is a perfectly good assessment of the impact of activity in a limited number of activities. If you prefer that, then use that.
But we are talking about an NHS assessment where people will not have the choice to use FUNCAP, so “if you prefer that, use that” is a moot point (as well as being a rude retort) and she still fails to address the point that FUNCAP already exists so why bother doing all of what she’s doing.
I can only rightly conclude that I'm suspicious this is about trying to stop access to these measures, the normal measures any normal person with human rights would have if they had any other medical condition (as well as of course them getting medical care) by removing SF-36 and removing FUNCAP the ME/CFS specific one (which for another condition would be a relevant measure of that condition) under some veiled claim of this being now 'what they use instead'.
So when the PROMS hides all adjustment from needing to be carried to the bathroom/commode to taking more time levels under 'avoid' or 'adjust' and then claims it is both measuring disability and/or change then we are getting weasel words from Sarah tip-toeing in response to questions mentioning DWP etc of 'this bit used on the MEA app has NOTHING to do with it' so people are distracted by the strong assertion and not noticing the very caveated bit noting she is only talking about one aspect of its usage.... well....
Sorry but I'm concluding she might not know what she is doing on methodology or a lot of other things too but I think she knows and is not naive to all of these impacts and context.
The ridiculous comment she made suggesting to people mentioning 'AVOID' being used instead of 'can't if I want to be able to get to the loo today waste my energy sitting in a car' that they "should reclaim these terms" is just obscure bombast.
The term avoid isn't something that is accurate for us to use. So trying to use propagandic language on something inaccurate when noone should be wanting to use it and tricking them they should start using inaccurate terms about themselves because someone tricked them that would be what others with ME would sugest is 'reclaiming' is just mind-games. Why would someone call themselves something that is wrong. It isn't
just a derogatory term. So why is she encouraging or insulting others to tell them to harm themselves by calling themselves it, nevermind 'fight to use it' other than to push them around to trick them into mislabelling themselves becuase it works for her agenda.
It is just a charter for someone who wants to use 'ist' or 'ogyny' terms at people whilst see if they can get away with not saying sorry or being called out by society isn't it for her to be trying that one one. WHat's next, her claiming screaming 'catastrophising hysterical etc' (when she got asked a question she couldn't answer because she was covering up what she was up to and want to distracted) should have been taken as anything other than a problematic temperament and the lack of apology showing up that she isn't suitable to be in any position where she would have input or power over any pwme or someone in a similarly vulnerable situation. If you can't stop yourself name-calling then..
It's even very different to a normal wife called hysterical and crazy by an abusive husband finally getting free and then making a joke of calling themselves hysterical sarcastically even (not that thye would want to, and the idea someone else who never went through that would suggest it is outrageous and should make them a persona non grata in normal social circles until they apologised and learned), BECAUSE this is an official blinking clinic and HOW the whole condition is being assessed. So what the heck is she talking about????
But then she is a professional who has been heavily involved in pushing FND treatments and diagnoses (and I don't know how accurate those have been but she talks of not questioning those too in one of her papers being important). And we all know that there is an issue with a new cabal pushing for those more severe to be seen as having FND or some other 'new brand' to cut off the spectrum so that when people who are milder are made iller by this 'treatment' they get disappeared into a new diagnosis instead of being logged as harmed/injured. And of course the idea that being severe exists gets disappeared. It's the same playbook.
