UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

I can’t quote the post @JemPD but here is a screenshot “no I avoid doing this so I can do something else”

 

I'm on a repeat loop with this stuff - not a clue....
Does the MEA actually have a clue ?

 

Well I do a lot of things at one point in time, but then avoid doing that same thing at another time (so I can do other things) so one day Imight see friends or have a call and the next two days I won't, so I can tidy up. Then I abandon tidying up in favour of a lift to a shop. Which I’d avoid if I was having a visit from a friend.

 

OMG.

"co-production between people with ME/CFS and specialist ME/CFS services. This is to ensure that the toolkit provides information that is important and relevant to both people with ME/CFS and clinical services, and is easy to use. Ensuring the ‘patient voice’ is heard is front and central to the project"

This after the researcher involved insulted pwme on the S4ME forum who were trying to offer constructive criticism and then the MEA totally dismissed the complaint and objections raised when the committee wrote to them.

Easy to use? One of the questionnaire is forced choice and 98 questions long!

Absolutely fuming !!!!!

 

There are patients with ME, then there are patients with ME…
I suspect we are “the wrong type of patient” as usual

 

I don't fully get that - is it delayed too? I mean it takes years for most to pick up on PEM anyway even when it is a massive crash - simply because of the rolling PEM situation and thereby needing to have a period in time where you have more significant breaks in exertion/committments etc or are more in control to see the pattern. I'm not sure what symptoms or level of them in this instance are being associated with this few minutes either to eventually know it was PEM and not a post-lunch slump or done in when back from work etc that normal people talk of sometimes.

Not being able to wake up your head and body for many many hours (and basically outside yourself having set all sorts of alarms trying to drag your arms to move and so on, but it is all so done in that it's given up being forced to move anymore) is something that it is hard to get across and I'd probably have just put it down to a bad morning and my alarms would have been set for however many hours earlier anyway to be able to get to work. Did I go through that stage at any point and just not realise it I wonder., it is a bit hard when I don't have much of 'normal' to compare to anyway and when I was well I was incredibly fit etc.

It is such a strange condition. Agree if someone has done minimal ears-open aiming to understanding of it they had no chance of doing anything useful, and a lot of chance of doing something incredibly harmful and misleading.

They aren't mapping what she's mapped before: it's not diabetes management, they are mapping how to measure the course of diabetes if someone wasn't allowed access to treatment/there wasn't any. SO pulling out the rehab template for after they've got a good insulin regime and thinking the rehab bit still works is just silly. Like deciding that doing the rehab part on the broken leg if for some reason no operation happened to fix it was 'at least doing half the treatment' and would still work and be useful 'cos you adjusted the workload down by 10% compared to if it had been pinned'.

 

But but but Sarah Tyson has ME, she assures us Gladwell “gets it” and is a “good bloke” as is the other “good bloke”.

 

Yes indeed, as people get more experienced they learn to be more tenacious with their envelope because the world has been taught (explicitly by the very people who 'claimed to be there to help us') to give us no truck. And we still have needs of all kinds. Your food shopping goes from being able to enjoy grabbing that as you want to not only being delivered but then having a plan of how it will get to the cupboards. Based on what else is in that week.

Given the supposed justification for doing this project at all is supposed to be 'it will be useful for discussing with your HCP at appointments' to help with I assuming seeing whether your health is going up or down and how to manage it then the focus here is in utterly the wrong place.

Instead of 98 questions and 5 options, it should have been the other way around. So much more detail on the impact of the tasks and what other aspects of life get in the way of how you are likely able to do them. Things you wouldn't normally 'indulge for' so if they are being short-cutted...

Those 5 tasks could be chosen by the individual, but there will be commonalities and if someone aimed to understand the different levels they'd probably be able to cite a list of suggestions off the top of their head for each level. I imagine that showering would be there for every single level - except the more severe you get the more it would be another form of washing and that would still have impacts and issues due to someone entering the room etc. Brushing teeth another. I can't imagine a level where that wasn't difficult when in PEM/stuck in a situation where you are required to overwork vs your health to be able to do it as you want/need and get to work. They will be the areas that will creak at the seams.

And yes, someone might need to mention then a description of what other exertion issues or health decline are leading to that. But given people don't really have choices on things like what your boss required you to do or your kid needed, and that building site next to your office/home jack-hammering all day etc..

A smaller list would give a good professional enough of a sense and a discussion starting point. Even 25 items will be red herring people where a poor HCP fixates on why item 24 was avoided last month.

Given this is non-exhaustive as a list of what could be causing exertion in someone's day and that is an issue cumulatively day-on-day over the space of eg 6months (if it is just over) I can't even say this could be justified to give some sense of ability or disability to someone else.

 

There is a point to note about workload (of doing the questionnaire) and its validity in relation to these also.

People use scales normally when they are 'shades of one thing'. For example satisfaction (focused on something pretty specific) or 'very much' to 'very little. On that basis they justify that it is one question they are asking.

When in reality you are starting to ask people to categorise into these different pots for each item then the cognitive/information provision task 1. no longer becomes something simple where someone might fit between eg 'very much' and 'much' but sort of whizzes through and that will do based on gut instinct and 2. it is certainly very possible that three of these or even more could actually apply to the items listed for some people.


I mean it is the equivalent of asking someone who went to a theme park about each of the rides not 'how accessible did they find them' and then getting them to write a qualitative answer

but pretending rather than it actually being 5 separate questions you could have a 'scale' of:

- yes I enjoy this ride or maybe I have no choice because it's part of a job I'm paid for
- yes I do this ride as long as the queue is short enough and/or it's a sunny day and/or I don't have a headache and/or it isn't too far from the car park
- no I avoid this ride, maybe so that I can do more of the other rides or maybe because I have an avoidance issue with something to do with it, or maybe there is an accessibility issue, maybe I can only do 3 rides maybe I go round the same 3 rides 28 times (or walk for 4hrs)
- I don't go on this ride OR can't.. maybe we just screwed up our timings and its my favourite though
- not applicable

What exactly would formatting it this way actually tell a theme park either about its customer or about its rides or how to market them or what tweaks it might make?

And yes, anyone answering it would be thinking that was a terrible way of formatting the question and a bit of a cheat to pretend it was just one.

 

Because they've mixed up concepts they've missed what is a pretty common thing which is that for most people with ME/CFS they will not have choices in a lot of the tasks on their plates. ANd have few choices about how they do them (if work tasks) so others have to be adapted to fit them, but the real help an OT could do would be to ask work to put the printer nearer if someone is walking 100m to it 25 times a day so that they can have enough energy for lunch.

And someone might not 'avoid' doing something but it doesn't make the list due to these other committments. Some of the things they 'do not' might be things they could if it weren't for the 800m walk from the work car park meaning they get no weekend. I had to avoid/not do my favourite things/say no to weekends away (I'd jump at if I had 6months off) in order I had a chance of being fit for work on Monday.

So almost all of the 'material' is actually in the middle 3 but they are poorly written and not understanding the titles don't apply to what cognitively/physically people are having to do (they aren't avoiding they 'don't get to do', they aren't 'yes I can do it' they are 'no that task finishes me off but I have no choice')

It is utterly changing the narrative of people's lives. And really naughty in potentially gaslighting their identity when I though eg OT who might be able to help is most concerned about 'meaning' and what is important to people as well as where they can help. It also doesn't note that what people 'do do' has no bearing on what they 'can' because they can be being made very ill indeed by what is on their plate.

This has been written by someone with a certain mindset of 'shoulds' feel to it?

It is neither giving them an idea of what someone's healthy threshold/envelope is (because it doesn't ask that), nor really asking about the impact of any of these tasks - because the understanding is fundamentally missing the point that it isn't 'avoidance' but 'after-effect' of each of these task. And is very strange in really not getting the concept of 'choice' isn't there for most people.

 

As it is about 'measuring delivery' and doesn't seem to care about 'how' you get things done, I assume it is to be used as a fake KPI to pretend they've 'increased people's function' by either coercing people to change their responses or coercing them to 'do more of these' necessitating that they have declining health and decline in the quality of the other items that might have been sensibly prioritised.

SO we have a load of people with badly brushed teeth in order that they fit in a tick the box on saying hi to the neighbour for 30 secs, because someone put it on their 'goals' and that someone will then give themselves a gold star deluding themselves they've 'helped them recover from an illness' when they've just bullied inadvertently the heck out of someone incredibly ill into showing the neighbour how they don't brush their teeth properly and can't wash their hair as much as they like and aren't really 'with it' at that time of the day.

It has turned (although was it ever any different) a vulnerable group of people into a 'vessel' via which certain HCPs will achieve their goldstar then be left broken at the end of it and at that point the insinuation kicks in to make sure others look at us as pathetic so it's our fault.

They don't want to measure either overall function or health because well that's not something you can force the vessel to deliver. Just like a boss finds it easier to force their team to do 25 tasks than to make their team productive, happy and reduce turnover.

The problem with ME/CFS is that we can be forced/coerced into doing things that harm us, and doing loads that cause long-term deterioration.That's really the problem underlying all of this. And add in the awful stuff allowed to be said about us and it has made us uniquely vulnerable to certain attitudes and situations, but particularly lots of perceived threats directly affecting our survival possible - and the permanent disability comes later and people disappear from sight at that point.

Edited to add: And we've been made so vulnerable there are all sorts of perceived threats to hold over us, and when over-exerted so powerless to social pressure that you can make us say and think anything to fill in a form thanking the person who just did it to us and say 'of course I'm much better'. Particularly the naive newbies who don't know what's coming and are sure that 'hurt' doesn't mean harm but the promised land of 'recovery'.

Makes us a bit of a target.