UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023
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For each activity you are asked to pick one option, as before.
SECTION 8: EMPLOYMENT/ EDUCATION
NOTE: This refers to both paid and unpaid work/volunteering66. What is your current work/ study situation?
- Work is not relevant t me (e.g. retired, homemaker)
- I am working and settled in my job
- I am working/ studying with accommodations (e.g. extra equipment; flexible hours; ‘light duties’; extra time)
- I am working but have concerns (job instability)
- I am working/ studying but have adapted to reduce demands (e.g. self-employed, part time, less demanding job)
- I do flexible, unpaid work (e.g. volunteering/ informal education)
- I am currently on sick leave (or other type of leave) and would like to return to work/ study
- I am currently not in work or education but would like to return to work / study
- I am unable to work/ study
67. Is there anything else you would like to tell us about your work or education situation?
SECTION 9: FINAL SECTION
68. Is there anything else about your activities you would like us to know?
69. Is there any feedback about the questionnaire you would like to give us?
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No it's not just you. I made the point about cumulative effects in my comments.
Sasha
Senior Member (Voting Rights)
I'm not sure whether to participate - I've lost all sense of whether this is an objectionable/controversial project or whether we should support it by helping pilot-test the questionnaire. Can anybody give a one- or two-sentence heads-up?
BrightCandle
Senior Member (Voting Rights)
This questionnaire is garbage. Its not just that it fails to determine combinations of activities or even the dynamic nature of the condition but it fails to even assess static disability well. It constantly has to define what the answers mean for the various questions. For example can you watch TV for 30 minutes, adaption being less than 30 minutes with breaks. The same answers just don't apply across all the domains and questions its asking so it constantly has to define what they even mean.
This bad application of the same answers not only makes the questionnaire a lot more reading and mentally taxing than it should be but it also means it does a terrible job. Most of ME falls in the "adaption" to "not at all" range for a lot of this so there are only 3 levels of actual answer. That really lacks precision for disability generally let alone ME/CFS.
I don't see how this is useful, better tools exist such as Funcap.
This bad application of the same answers not only makes the questionnaire a lot more reading and mentally taxing than it should be but it also means it does a terrible job. Most of ME falls in the "adaption" to "not at all" range for a lot of this so there are only 3 levels of actual answer. That really lacks precision for disability generally let alone ME/CFS.
I don't see how this is useful, better tools exist such as Funcap.
MrMagoo
Senior Member (Voting Rights)
Whole concept is wrong, we’d be shifting the deckchairs on the Titanic, polishing a poop, tinkering around the edges and other similes for “the whole thing is garbage so any difference you make will be pointless” my opinion only.
Sasha
Senior Member (Voting Rights)
I don't want to burden anybody with a big explanation but would anyone like to explain what's wrong with the concept? Just a sentence?
BrightCandle
Senior Member (Voting Rights)
Seems unlikely they are going to pull this study now just because its a terrible mechanism. Participate or not it doesn't make any difference any inclusion of patients or opening to suggestions is tokenism only at this point. Patient reviews are pure lip service it never changes the outcome of what they do anyway, see the Department for health training modules and plan for a great example of where they completely ignored all the feedback.
The goal does not appear to be to get the right PROM measure.
Two reasons it's useless and harmful:
1. The aim is wrong. It's intended to be used in the old style rehab clinics that use 'goal setting' and 'treatment planning', as part of a suite of long questionnaires to enable them to show their rehab works.
From the document that comes with the questionnaire:
2. The questions are badly worded and make no sense. They take no account of the cumulative effect of activities, or how often you can do each activity, and they lump together 'adjustments that could be as little as using a cushion to support you sitting, to sitting for only a minute instead of half an hour.
It's useless and very concerning that the MEA is still supporting such rubbish, and explicitly expecting the NHS to continue providing rehab clinics instead of physician led services.
SECTION 6: OUT AND ABOUT
And in relation to @MrMagoo comment re: funcap.
I think one issue is that whilst wording as 'have you done' seems a progression from terms like 'could you' then when you look at the list of these items it isn't clear whether they are assuming people might do only one of these on the list 'on a particular day' (which for some normal people would only either drive a car or use public transport maybe, but for others like 'walk outside in the community' or 'visit others in their homes' normal people might do as well as eg travel in a particular day).
That is a problem because the ambiguity combined with the length of the survey and people being ill, but primarily the wording being the cause (and healthy people wouldn't accept it, it is just they might only have these surveys that mean less / are less impactful or important in their results and what it could do)
means that some will fill it out for one thing eg 'any of these that they might have done on an average day' (which might have been a bus on Mon and driving on Thurs)
whilst others, or indeed those analysing it have intended or will be interpreting this as is it were 'what someone on a particular average day would do altogether of all of these items'.
When we are talking about people who explicitly have problems where they might be able to drive or be driven but only to somewhere that they do not have to mobilise once parked ie can park straight outside, and that very specific differentiation is the definition of their disability-level, then that is a big problem.
But worse, starting with 'in the last month' and then 'have you done this activity on an average day' very much pulls this even further away from clarity and nudges people into saying it is their month's worth of activity and not their day's worth of activity. Which is, for anyone, going to be significantly different. But doesn't acknowledge the either/or and individuous choice cardinal disability of ME/CFS. Along with it being very puzzling because the cardinal aspect including PEM means that how many of these 'average days' - which could be anything from 1 to 31 - exist, should matter.
So for someone who is severe this is useless and will produce very misleading data. Because in a month if you have to do any of these items eg to attend an appointment it might put someone into PEM for most of the rest of the month - which the term 'average' is again ambiguous about/doesn't acknowledge.
By her choice of terms she will not know if any of the individuals are filling it out for a PEM day, a 'this is making me deteriorate' day (such as someone stuck in a job they can't financially lose but that is making them more and more severe each month), a day for someone who has a low enough threshold they can do one of these items without PEM in some way, or is the person listing the different things they did on the 10 days they had enough threshold to do one of these items and she is interpreting that as 'on an average days I can and do do all of these things together in the same day'.
Does Sarah think that being 'in PEM' for 30 days make one of those 30 days 'average' or would you interpret the 'average day' as the day when you are neither in PEM or being forced to put yourself in PEM and struggle through something you mightn't be able to complete without it making you ill at the time anyway because it is unavoidable. It just makes me think how different the life vs disability of those she has listened to in order to create this must be from mine, and others with ME/CFS who have similar lives, that these terms have not been picked up on.
The bit in brackets after this 'average day' saying 'rather than a good/bad day' gives me an indication that perhaps she knows what she wants to get at, very specifically, hence all of the caveats, but it really by all of the caveats which are ambiguous in themself are just compounding the issue.
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EDIT: this has now been clarified by @Trish in her post below that the 'choose one answer' is in relation to several options being given for each question (such as 'with adaptation' or 'can do without adaptation' etc)
My underlining to emphasise the 'choose one answer' at the end of this:
"Over the last month, have you done this activity on an average day (rather than a good/best day)? (Choose one answer)"
Am I going bonkers in thinking how does the choose one answer from this list make any sense at all?
These are not graduated versions of the same thing but completely different tasks used for different things. And asking about what people did - on their 'average day' (neither good/bad day) in a month
And forcing them to choose only one of things like:
passenger in a car
walk short distances outside
use a wheelchair
visit others in their homes
When visiting others in their homes would require doing one of the others in itself?
What will the one answer to this from anyone answering the survey be taken to represent?
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MrMagoo
Senior Member (Voting Rights)
My opinion - the concept is to build a body of data on pwME primarily to measure NHS outcomes on NHS fatigue services.
That’s the starting point. Working back from that is a fudge of rehabby stuff for patients to complete.
Whether any of this is helpful, useful or needed by pwME is less than an afterthought.
Also wearable data/tech was ruled out from the start, absolutely Pooh-poohed. 90+ questions on multiple questionnaires much better! Also the lead researcher came here and behaved very badly towards us. But she has ME so she speaks on our behalf.
MrMagoo
Senior Member (Voting Rights)
It’s just a load of hoo-har. But they won’t have it, they think is gold standard amazing brilliant super smashing.
I’m not even going to read it, it was a waste of my time the last few times, I could be stroking the cat instead, at least she appreciates the attention!
Cat tax for being a moaner
Attachments
No. Each question has the same set of answers so I didn't copy them every time. You are asked to choose one of these 5 options for each question/activity. Sorry, I should have made that clear when I copied the questions.
Not applicable. This activity isn’t relevant to me.
Yes, I usually do this. It is not a problem.
Yes, but with adaptations (e.g. using a method that needs less effort, aids and equipment, or help from others)
Not really. I limit or avoid doing this so I can do other things or because it makes my symptoms worse/ triggers post-exertional malaise.
No, I can not do this
"The aim is to identify, understand and quantify people’s symptoms and disabilities.
It will also support goal setting, treatment planning, and monitor changes.
The aim of this questionnaire is to measure activity levels, and ask about the adaptations you may make to manage your symptoms and/or energy levels."
From the section I have read so far it cannot do any of these things without being gross misrepresentations due to the wording and limitations.
1. It can't and doesn't attempt to 'measure activity levels' because it takes no measure of what people 'have done in a month or even a day'.
It could not do that for a healthy person - who will have other things on their plate too and might also find that one of the activities has to increase for reasons that have nothing to do with them being able to or choosing to, such as if their car broke down or their employer close their car park to them, which means if that becomes a main measure it misrepresents their activity as increasing when they might have had to stop socialising, grocery shopping as much etc or now can only work 4 days a week
2. It therefore can't measure changes, Because it isn't accurate to begin with and isn't 'measuring the gap directly' (which is what good clinical care should be doing anyway), but yes is about rehab and the tyranny of using data to focus on 'if people are behaving right' in the classic no-win conundrum - imagine a normal healthy person being forced to fill out something where they get blamed and told they are tired because they are stupid and did too much or blamed and told they are tired because they are stupid and did too little. Because this isn't a clinical tool and I haven't seen any discussion from them of where there is either science or discussion of the illness or condition.
even if the illness was 'about behaviour' - which we all need to keep remembering it isn't and its pretty bad that rather than this being a measure of 'physical function' ie the SF-36 this is a ploy to replace (from Crawley et al 2013) - but any medical clinic would be measuring actual health outcomes over a long period which this would be a part of and done in a completely different way as a triangulation to eg show people getting more disabled at the same time as iller from having to do too much.
It seems to obsess over a compulsion 'it's their behaviour' not an illness and the outcome of this thinking is to attack people's mental health and health through inappropriate micro-scrutiny and violating their privacy on the most intimate thing you can 'the very minutia and ins and outs of their life and being and body' with intrusive questions, for no explainable justification to decide it is entitled to this intrusion.
3. It can't make up its mind on defining what 'an average day' is and does not make it clear. What if a person is stuck in rolling PEM with no choice what they have to do in a day due to work or childcare - doesn't PEM not matter? Are they going to be looking at the 'impact/long term health outcome' of such activity? Context matters.
ANd due to this ambiguous wording then there is a validity issue and internal consistency across different people and maybe even within individuals if someone was to be expected to fill it in repeatedly, there is no reason why I would necessarily even if I read it in the morning then later in a day would come to the same conclusion about what counted as 'average day' whether it was the few 'non-PEM, non-pushing' days or actually if most of my days are in PEM that month then that is average - and you need to know what the other measures will be to know the context of it
so if they are using something else to find out you've declined and are asking if you've been in PEM most days is that on the actual output? or are they being cheeky and instead of the proper interpretation of realising if your average day was PEM for the month and the previous month was doing 'too much' then the reason for the lower activity is overdoing it last month, rather than twisting the data to say you feel tired because you do less etc.
4. agree on the adjustments - how long is a piece of string. What usefulness is that? FUNCAP is specifically about how adjusted something has to be for example and then how little someone can still do of it in a month. ie it focuses on the cardinal disability of ME/CFS (overall envelope, pushing over threshold means PEM and deterioration). Where this seems to be doing the opposite and burying these 2 as buckets.
So no, it can't help with either adjustments or the disability associated with ME/CFS because it is burying them from what I can see by measuring them in fuzzy buckets and deliberate ceiling and floor effects that are at off the scale levels - if someone would get 'no change' if their disability took them from only being able to sit with a cushion to only being able to sit for one minute.
Can you imagine the impact that would have at the micro-level if someone was communicating with an employer and could only sit for one minute but it was getting treated as if they just needed a cushion?
And then multiply that, bigotry-wise to the macro-scale for a seriously debilitating illness where even those who might be mild now need to be aware they are not immune from ending up severe/very severe if pushed too hard, and yet the orthodoxy has been to lie to them in order to trick them into working themselves there whilst their body screams.
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thanks for confirming - that makes it make a bit more sense now.