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

tornandfrayed said:
"Yes, but with adaptations (eg aids and equipment, help from another person, more slowly than a healthy person, or using methods that involve less effort) AND/OR I limit or alter other activities to achieve it AND/OR I limit how often I do it to enable me to do higher priority activities."

This option particularly bothers me. It draws in too many variables (although nothing about repeatability or reliability or harms). It's the option that will be chosen most often for the unavoidable activities of daily living. I think it will be used to draw the conclusion that "these people are a bit restricted but with appropriate adaptations they can do whatever healthy people do". It fits very well with the messaging from the DWP about grab rails rather than an income.
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I agree.

There is a world of difference between

being able to shower daily, though a bit more slowly than a healthy person, and using a shower stool when hair washing

and

showering once a week or less with aids and assistance, with hair clippered short to make washing and drying manageable, and feeling crap for the next few days as a consequence

Yet both are classed as able to do 'with adaptations'.

If this questionnnaire is used to calculate some sort of summary numerical statistic, both of these would register the same, but they are worlds apart.
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I was going to try to do a detailed feedback on the questionnaire today to send to the research team, but I'm having a bad day, so it will have to wait.
 
I haven't seen all the questions, but with so many you'd think they'd be able to have the granuality needed to capture pwME's lives, but it's all so broadbrush. How about - standing - how long before you struggle - less than 2 mins - 5-10 - over 15 mins?

Part-time work - that could be 20 hours per week or 4. That's a huge difference.

The various activities for 30 mins, but being able to manage 25 mins is a lot different from 3 mins.

(Struggling, so this is very badly written.)
 
Trish said:
I agree.

There is a world of difference between

being able to shower daily, though a bit more slowly than a healthy person, and using a shower stool when hair washing

and

showering once a week or less with aids and assistance, with hair clippered short to make washing and drying manageable, and feeling crap for the next few days as a consequence

Yet both are classed as able to do 'with adaptations'.

If this questionnnaire is used to calculate some sort of summary numerical statistic, both of these would register the same, but they are worlds apart.
________________

I was going to try to do a detailed feedback on the questionnaire today to send to the research team, but I'm having a bad day, so it will have to wait.
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Me too

but the more I think about how dangerous this is…


It is using a distorting framing which will distort what someone’s disability and abilities across days weeks etc look like

I think it’s misleading in concerning ways too. Most days I can’t shower. As you say eventually you have to do so in a good day you’ve rested gif using all sorts of adaptations.

It isn’t focusing on the disability or the invidious choices and seems to roll all of these adapts and can’t into one ‘ya di ya di ya di ya’ don’t care

I dread the potential for what is being twisted here and the behaviourism behind all of this
 
bobbler said:
Me too

but the more I think about how dangerous this is…


It is using a distorting framing which will distort what someone’s disability and abilities across days weeks etc look like

I think it’s misleading in concerning ways too. Most days I can’t shower. As you say eventually you have to do so in a good day you’ve rested gif using all sorts of adaptations.

It isn’t focusing on the disability or the invidious choices and seems to roll all of these adapts and can’t into one ‘ya di ya di ya di ya’ don’t care

I dread the potential for what is being twisted here and the behaviourism behind all of this
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And yes if they aren’t providing either the same correct terms for why people can’t or the extent of adaptation and having to live with a half shower etc

and expecting their ‘pick one day’ experiment instead of describe a day within PEM

and talking about consent levels of handing over data to places

what if someone is incredibly disabled and had filled out an official form somewhere else (like PIP for example) using the exact language of their limits and is then filling this in and is forced to tick a ‘best fit’ box on here when exhausted 80 questions in that someone claims undermines or contradicts that but is down to exhaustion and coercion (they shouldn't have been having to answer that many questions in anywhere near the timeframe given and will of course have to push through if they are to complete it in 'weeks') if question wording and then picking one too far to the left or right or reading the activity wording wrong. Could that be absolutely confirmed it won’t be used and have implications for them?

and what if those who don’t fill this in but these people claim a few if the same severity did and they said they could x (even though that isn’t checked and could be anyone snd people vary snd this is dodgy methods) will that be used to claim that person who can’t just needs ‘teaching and motivating’ ergo missing the point that those who did do that ended up iller four months on

I’m finding it hard to see the picture if how this will be used for good in clinics and why on Earth apps looking at overall exertion without this intrusion wouldn’t be being used

they are asking about intimate relations !!!!
How on Earth is that relevant to what they plan to do in clinics??

what are they going to do with that if someone couldn’t clean their house but ticked that?
 
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It occurs to me that the clinician would learn a lot more about what a person can and can't do by asking them to list their activities on an average day and whether the following days were PEM or not. Back to the old activity diaries.
 
AS IF their email claiming ‘used fir other chronic illnesses’ isn’t a lie here

that’s a major ethics breach. There is no way people with MS or cancer are being asked this in clinics

and AS IF a clinic looking at ‘delivery of’ outsourced hip replacements is asking this

it’s an utter utter dystopia

and the main charity is being the pusher instead of the protector

would ANYONE sensible fill this out about themselves if it wasn’t these lies and the fact it came from an ME association email ???
 
Trish said:
It occurs to me that the clinician would learn a lot more about what a person can and can't do by asking them to list their activities on an average day and whether the following days were PEM or not. Back to the old activity diaries.
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NOONE should be required to have that level of intrusion in order to access ‘medical care’

I’m sorry but we’ve been walked into an utter horror here where it feel a charity is stitching us Uk for our human rights to have been totally finally removed

it’s like the worst horror film of a small segment of people who get told what they get to choose each day how to do it and when - but certain psycho nutcase types who are attracted into certain roles due to vulnerability/ power issues’ wet dream.

just think how horrific this is and what it’s leading to

the coercion used in the past of ‘won’t write letter saying you participated unless…’ fir anything someone’s safety depends on

and someone has a very filtered an intimate list expectation of what and how you do anything they care about

whilst ignoring that most exertion to us is bullying and noisy neighbours and being shouted at … things they never wanted to acknowledge anyway (because behaviourism acts as a cover for abuse by pretending things like ‘it only harms if the receiver lets it stress them) as if it doesn’t leave us with less than our envelope many days anyway

how is someone going to get some of those health finishing off situations sorted when you’ve these people using this crap to reframe to the world all that matters or counts is how much tennis people play

why the hell - and no, no one is that blind or stupid, is the MEA doing this to pwme?
It’s a worst nightmare scenario of them having handed over our final rights to these loons and let them own our last bit of health snd at least feeling slightly free from some things (nowhere near what normal people take for granted as liberty and not enough to be bearable) so we are condemned to a life of being observed like the most Guinea pigged locked up monitored mental patients with no rights ie this is potentially a way of institutionalising people for their entire lives without needing the building
 
I think it should be up to the pwME to decide what information about their activity levels they want to divulge. I find questionnaires like this that are very lengthy, include lots of activities I can't do, and at the same time ask for it in a way that doesn't provide realistic information can be pretty upsetting. It's a strong reminder of the trauma of filling in what you can and can't do for benefit applications.

There can be the sense that at last I'm able to show just how disabled I am, which for an inexperienced patient might give the impression of being heard at last, so I can imagine some pwME filling this in will give positive feedback.

But what can the clinician do with it? File it away after a quick glance through and asking a few random questions? Use some sort of overall algorithm calculated figure to try to demonstrate effectiveness of therapy? No doctor is going to waste an half an hour or more going over all the questions with the pwME.
 
MEMarge said:
At minimum they need to ask how much people can do in a week.
Eg. I could have a shower or prepare a meal or xyz, twice a week on average.
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I'm worried about this because I'm coming at it from a professional perspective.

In seeing how apparently under some dodgy excuse (I mean really this is also going to lead to a very, very bad and inappropriate service - which has clearly all been made up around BACME not wanting to have deprogramming in their false beliefs, but every single patient being sent in to battle with said person trying to use sophism to cosh them with their 'no you've got the false beliefs I'll prove it' nonsense)

These people are conning huge numbers of pwme to fill in a very selective document - selective in what exertion goes on there, and selective in what you can choose if it isn't 'I can and do do that normally'... for example the term 'avoid' instead of as per the disability having constructed 'I am unable to do that without it causing me harm, or I can't unless I gave up brushing teeth and everything else essential'

BS will it not be used as a massive piece of dodgy research by them to cosh us all with.

If people say they can too much then 'not disabled' or 'others can'.

If people chose 'avoid' then = proof for expsoure therapy approach

If people chose the massive bucket of adapt, change other activities etc - basically 'the disability' it is so non-specific and the list so non-comparable unless they are comparing different people ie using lowest common denominator or themselves using their own guessed at ratings for each activity (remember how wrong everyone gets showering on the spoons front) to compare between the two days in time then ... what?

they choose 'can't' then the rehabbers claim all they need to do is teach and motivate us... hands out for funding

you get fishing analyses suggesting that pwme do less than x physical or cardio activity a week = cart before horse nonsense AGAIN. Because there is nothing in this looking at causality or patterns.


What on earth do they think this is for?


DO you not think that most healthy people if handed something like that would get half way through and become suspicious. There is no way they'd fill in the intimate relations questions with only those options to pick and no 'rather not answer' or 'other context' and think they should be expected to trust how it is used.

Are we expected to be the most naive and taken advantage of people ever. Why do people justify this. And as I say, I'm saying this from a professional perspective. It isn't 'catastrophism' its objective, from the outside, like 'what the heck is anyone doing backing this'.

But it's worse. It's from people we know are absolutely fixated on doing anything to not have to deprogramme themselves from their false beliefs, so are focusing purely on gettign away with proving and nailing pwme with these accusations their false beliefs come down to. People who only analyse data with that mindset and make very strange inferences not supported by their methodology as standard as a profession. Who use dodgy assertions about people's 'personality' based on nothing and saying it's research and proven.

And instead of this - obviously the most 'delicate' and wrongly worded part - having the strongest of protections with regards data and guarantees 'it's just to select the next stage from' we now have a new consent agreement with all sorts of weakening of normal protections in most research.
 
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As an example if some app like Visible suddenly announced it was selling pwme data to eg Sharpe, Chalder, Wessely or White everyone would be terrified.

This is worse, it is getting people to fill in themselves selective stuff that nudges them to tick boxes described in ways that don't actually fit what is going on.

I don't think anyone should be doing the 'I'm sure they mean well' or 'surely not' or 'but what or why would they do that' type of thing. Noone else when it is themselves or someone they love does that fop off. It is 'please confirm these standard protections' and 'please confirm precisely how this data will be used before I allow x to fill it in' and 'please correct these inappropriate descriptions of why not'. You don't do the we have to trust them, and the wording mightn't be quite right but it will come out in the wash with an oops at the end.

We have our answer, which is suddenly loosening the protections and requiring even more to be signed away than is usual in the implicit consent agreement - it is the standard that data could be removed afterwards, and it is normal that if any data was to be shared and not utterly anonymised and aggregated (with minimum numbers to ensure not identifiable) then the exact way and receiver of it would be named in more detail.
 
Trish said:
I think it should be up to the pwME to decide what information about their activity levels they want to divulge. I find questionnaires like this that are very lengthy, include lots of activities I can't do, and at the same time ask for it in a way that doesn't provide realistic information can be pretty upsetting. It's a strong reminder of the trauma of filling in what you can and can't do for benefit applications.

There can be the sense that at last I'm able to show just how disabled I am, which for an inexperienced patient might give the impression of being heard at last, so I can imagine some pwME filling this in will give positive feedback.

But what can the clinician do with it? File it away after a quick glance through and asking a few random questions? Use some sort of overall algorithm calculated figure to try to demonstrate effectiveness of therapy? No doctor is going to waste an half an hour or more going over all the questions with the pwME.
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I know exactly how it will be used. Instead of looking at overall exertion, the thing that matters, you will have those whose entire focus at the moment is trying to prove their false beliefs aren't false will pick out individual answers to argue with the attendee over. In some dodgy attempt to 'prove something' using rhetoric. How many times has someone had 'but you managed to get to your child's wedding that one time', or 'maybe your x is because you don't move it enough'.

UNless you were a real physio, who did real physio things like addressing someone's neck issue then you wouldn't be focusing down on the details of precisely what individual things they did in a day - and even then it is only because eg maybe the bending down to do that so many times a day is part of the issue.

I don't want any of this being worded into nonsense terms like trauma this is about standard protections that citizens have, and appropriateness of medical care not being used as a trojan horse to intrude into people's lives where it has nothing to do with their condition. This provides fishing expedition data. And it doesn't list things in terms of relevance to the condition or the person. For eg a lupus clinic would you get someone going in being asked about their swimming unless it had been something brought up by said individual?

And even a real OT wouldn't map people's daily list of activities in this way.

There isn't anything 'helpful' it is sadly I think about reframing said appointments to specifically not be about the condition, or the illness side of things but absolutely to treat it like it isn't a disability but a rehab the person who - goodness knows what lies they tell themselves each week about the fictional thing 'stopping people' that they intend to 'over-ride' and get a gold star for.

I think you might have put your finger on it that maybe some will have the outright intention of this becoming a list by which patients will be coerced to improve their subjective answers on in order to get 'not bad things' written about them, so the clinic person can get their claims of 'effectiveness'. And all sorts of dodgy stuff going on like 'don't put that too high at the start' like you get with the old added value and yearly improvement assessments in schools on reading etc.

We know these people use these things like behavioural psychology punishment/reward techniques (which isn't real 'psychology' just a really horrid mindset some have being described) - whilst thinking they are doing something else - so appointments claimed to be medical become about everyone being put under some assessment regime where they must claim to perform otherwise... and if they do but they couldn't really then their lives become even more desperate as a letter tells their job they are fine etc. When the house of cards falls over the whole thing gets interpreted as someone being a bad person. Cover-up mode on them happens, rewriting of their medical records get filled with all sorts of dodgy narratives about them. Those are just the facts of history of what these people have done (and still don't admit to themselves because they believe what they did).

cut for length
 
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I have no idea of the motivation of therapists who might use this questionnaire. I would hope they intend to be helpful. But there is huge opportunity for misinterpretation of the data from this questionnaire.

I think it would help this discussion if Sarah Tyson or Peter Gladwell were to join us and explain how it is intended to be used for clinical care.

For example, has it been designed with an algorithm for calculating a functional capacity score, or series of subscores? If so, we need to know what that algorithm is, so we can give informed feedback on whether the numbers make sense.

And will it be used to generate electronically a summary report for clinician and patient, and even for reports to send to benefits agencies? If so, that has presumably been designed as part of the process of designing the questionnaire. We need to see that too.

And what will the pwME and clinician learn from the data to improve clinical care?

Believe it or not, @sarahtyson, I'm not hostile or trying to be difficult. I'm not catastrophising, or inventing problems. I really want to help improve resources if possible. It is hard to contribute useful feedback when the researchers refuse to talk to us or treat us as equal collaborators with them.

It matters a lot to me, because if my local ME/CFS services adopt this resource package, my daughter may well have to go through it in order to continue to get benefits when I'm no longer around to help her fight her corner. It matters to me hugely because thousands of pwME may be subjected to BACME style pacing up therapy and have these resources used to support that approach.

It doesn't have to be like that. If the research team were to redesign the resources in a realistic and genuinely useful way, incorporating what experienced pwME actually find useful, including wearables and other technology, it could be so much better.
 
bobbler said:
In some dodgy attempt to 'prove something' using rhetoric. How many times has someone had 'but you managed to get to your child's wedding that one time', or 'maybe your x is because you don't move it enough'.
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It wouldn’t be me if I didn’t go off on a tangent. My niece is getting married in four weeks, but the planning to get me to the wedding started in February and has taken a significant proportion of my available activity since: organising my goddaughter and her partner to drive me, an air B&B for them, negotiating with the hotel about the location of my room and accommodating my dietary requirements, sorting a suit, getting a wedding present. It is hard to see how a simple questionnaire can pick up on all these things, the need for planning and all the other things not done to allow this planning, let alone the preemptive rest and the subsequent recovery time. The logistics of this are more complicated than the six week trip to South America and Antarctica I took during a period of remission some twenty years ago.

Electronic activity monitor, that hopefully recorded the amount of time lying down as well would provide a much more meaningful record.
 
Trish said:
It occurs to me that the clinician would learn a lot more about what a person can and can't do by asking them to list their activities on an average day and whether the following days were PEM or not. Back to the old activity diaries.
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Yes indeed, I think they get an idea enough about how horrid the condition is from people just describing the impact of a few example activities and what it causes them. So maybe experienced patients providing advice on what is actually useful in a diary, but I don't think they need to be 'handed over' more might be useful where a patient themselves finds it good to track health vs what they did before to identify what might be the activities that are sending them over the edge etc.

Then some really useful prompt sheets to help them to focus down into how to describe and communicate this - but it's only any good if you have people who haven't had some strange brainwashing first (I note this because there are a few who knew nothing of ME/CFS I pointed to @PhysiosforME website, who 'got PEM' so it isn't hard... but then you often see over time that they speak to others who then try and convert and addle their brain by pushing these strange extra ideas - which is why I think the only answer is the old guard needing to be deprogrammed firmly and then having to be redeployed after if they after assessment can't 'get it').

Like having to lie down to brush their teeth, or not being able to do it for days then trying and getting half way through. Just hearing or watching them in a conversation.

Or someone describing exactly what they have to do in order to get through their work week and collapsing straight to bed after and all weekend and only being able to shower twice a week carefully timed to not smell at work but be able to not collapse in shower. But it being a house of cards if a work day suddenly gets more busy or you can't park nearby.

Either the illness improves and this becomes easier and things fit better, or people go downhill in illness. For every other condition doctors have been managing for years to assess if a treatment works or people are doing well or getting worse without all of this, so this seems a fake excuse. But it would help to give people tools to help them spot and describe their function in terms that are relevant medically (like, since taking x I think I can sit up a bit longer most days but then I've realised my weekly shower has turned into every 10 days).

It only really gets hard to understand when you don't think of the condition as an illness for which they have provided no treatment that improves the underlying condition. So people are having to live within their limits and work out what is possible without making themselves worse. Yet still can't control everything impacting the latter because after all it is an illness.

The idea that all of this is needed for appointments to be useful tells me a lot about how problematic these 'clinics' intend to be in what they are going to offer. You don't need this to communicate anything that is useful to understanding and managing the condition, only to some rather insidious ideologies.

The reason communication is so hard is because 1. it is such an extensive and strange illness, but 2. we have to talk to people who have decided in their mind to not hear what we say without a strange filter. So I think better versions of those sheets would help. But not without staff changes, and them being very focused to who we are meeting with and why (imagining the above, what is relevant for a doctor to describe how things are vs an OT and what they could help with).

Sadly I've learned to spot what the bad 'uns seek info-wise vs the ones who really intend to help/understand. But also doing a sheet that doesn't start with the person and even just splits by broad severities 'we've one for severe', just shows how little they know about the level of debilitation and how it strait-jackets life to very person/situation-specific limits. Some have kids, some support, some noise issues, other immovable committments that leaves choices between essential things. IN an appt with 10mins of cognitive energy to force people to not hone in on the few pertinent discussion areas and maybe 'moveables'... and think there is a lowest common denominator on how people have to make really important stuff fit... says it all that they think pwme should fit their format that works for them.
 
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Peter Trewhitt said:
It wouldn’t be me if I didn’t go off on a tangent. My niece is getting married in four weeks, but the planning to get me to the wedding started in February and has taken a significant proportion of my available activity since: organising my goddaughter and her partner to drive me, an air B&B for them, negotiating with the hotel about the location of my room and accommodating my dietary requirements, sorting a suit, getting a wedding present. It is hard to see how a simple questionnaire can pick up on all these things, the need for planning and all the other things not done to allow this planning, let alone the preemptive rest and the subsequent recovery time. The logistics of this are more complicated than the six week trip to South America and Antarctica I took during a period of remission some twenty years ago.

Electronic activity monitor, that hopefully recorded the amount of time lying down as well would provide a much more meaningful record.
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Oh Peter I hope that all goes to plan for you and that she has a wonderful wedding. :)

And yes, Precisely. That's exactly what I mean by their hand-waive to the disability part (and the utter tenaciousness of people battling invidious choices and how they can achieve despite limitations making things seemingly impossible) by chucking it as a 'adapt or not do other things or something...'

hiding the disability under a weight of other irrelevant boxes being forced to be waded through. So all of that is you being sat trying to work out what to put in the box, and it affects all of the other boxes for probably most of the year. But has no slot according to them. But they think these are all easy tick-boxes, because they don't get the condition at all. It's about which activities people choose to avoid vs which they think they can't.

And because they - with no attempt at putting themselves experientially through eg having an energy-limiting condition - probably had a go at how they would fill it in, when none of it counts to them, they have no threats or coercions associated with it and none of these are an issue or complicated they just multiplied that difficulty by two and though it was fine.

Just 25 of those and someone severe wouldn't be able to do anything else in the appointment (which would have had to have been by phone or home visit anyway) - that's if they do get to the end of them, definitely couldn't do 3 of these. And just filling in 3 of those if they were 25 questions would probably mean them using all their energy assigned to having a shower for the whole 6months between appointments.

I mean that's one way of making sure that no pwme could ever be part of democracy because they couldn't participate even with help in any consultation - ME-related or not, if this were a burden they had to try and pace through continually..
 
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