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

So any questionnaires completed when info sheet was unavailable must not be used, surely?

 

I’d say they can’t use those questionnaires, they’ve asked people to tick that they’ve read the info leaflet, you have to do that to complete the questionnaire. And the leaflet was inaccessible.

Once they know of this problem surely it invalidates the surveys taken without seeing the required info?

 

Also, I don’t see the difference between level 3 and level 4? they’re the same except you need assistance when going out of the home,

 

Someone raise a query on MEA social media perhaps .
Ethically dubious

 

This sounds so naive and missing understanding it is starting to be obscure?

I think their own descriptions of the different levels are part of the problem here. There is a common level between 4 and 5 they have just skipped over. Most people will have all of these sensitivies and definitely be need to be safeguarded from the cognitive vulnerabilities at level 4

They seem to have almost disappeared severe ME in this. And don't seem to understand the condition at all. Their 'housebound' definition talks about might need a wheelchair without realising there will be lots who don't need feeding tubes or completely darkened rooms but are bedbound most of the time and have to limit everything with cognitive issues being a huge part of that.

This is so not understanding the condition at all - I'd say beyond mild - in how it works. Perhaps because they don't realise it is people being 'ill' and they don't realise people can't do things without PEM which is increased debilitation and major symptoms, but also unavoidable at many/most of the levels because of the threshold.

I'm assuming their activities are both ridiculously discriminatory to a physical focus without 'illness' and don't account for the fact that probably every single one of their questions I also assume really needs an 'it depends' box for those who are milder... because it is about if it is the once a year you've had three weeks off work and 2 just sleeping to recover to do that shopping and a week after to recover from that? and how much of whatever activity.

What idiot writes 'swimming' or 'golf' instead of quantifying the amount of exertion?? Or does it at least manage to do that well?

And why are they not getting that it is about how much in a day, over several days, over a week and cumulative vs threshold over months - is it because one of them thinks they 'cracked' it with a 'pacing GET' that basically would I assume lead to most over-exerting constantly over a period of time to increase their activity leading to the worst way of permanent deterioration if you have ME/CFS ie PEM? and yes I think 'kidding yourself' techniques are worse than asking someone to run for a bus once or doing a big day with regards ME/CFS and the consequences... so why isn't this focused on measuring that? .. unless you are someone who doesn't like reality so doesn't measure it long term?

But then some idiot who writes 98 questions then suggests they think they 'get' or 'can speak for' those who have ME/CFS nevermind severe what else should be expected? SHocking!

 

Or at least means they should be emailing the info BUT absolutely must be doing so asking the question as to whether someone wants to not just withdraw consent but data on basis it was filled out without ticking any of that. SO it cannot hold.

BUt any poor soul who was really ill and made themselves ill for days doing all those questions should have - if they want to volunteer their rights for all of those things - the choice at that point to go in and change their answers and resubmit with consent OR for it to be deleted and trashed.

 

I'm so astoundedly outraged by this from a professional point of view.

NO research organisation should not be censuring people doing this - even for healthy people just based on lengths of questions there would be utter uproar: they are only getting away with this because it is a vulnerable, unwell and unprotected population they are targeting.

No normal population would fill out three surveys, with 98 questions in just one of those surveys!!! Not one!!!

And boy yes, would all the feedback and social media be flying about with comments on why ask things x times and what were all the unnecessary questions about.

But it isn't. It is people who are harmed by exertion, having the promise of 'access to the human right of health care' dangled as the threat.

And it is people who are supposed to protect the health of those with an illness they claim to care about, and have therefore read up on. But their length and type of survey shows they both don't, and don't care in a pretty callous way - given the initial snorty laugh reply to feedback in order to deter anyone, and deliberate avoidance of apology or explanation - then it getting worse than anticipated (snort, questionnaires can't harm). They should have been thrown out of any professional organisations and been dissociated from based on that.

Absolutely if you intend to be working with those who are more severe - I'd say more severe end of moderate onwards, then you should have safeguarding responsibilities not to deliberately take advantage of known cognitive issues. IN harming them with your crappy, lazy design methods that benefit your own agenda and easiest way of achieving that over the health of those you expect to participate. And in manipulating and coercing replies potentially by having a design that will definitely create problems for those who have cognitive fatigue. Thereby leaving them vulnerable to manipulation tricks in answers. And to not spot naughty tricks in the overall - just someone who cared about accuracy should have been bothered by that.

that last point of naughty tricks in the overall would apply to what any healthy population would also be up in arms about when faced with 98 questions. They would feel what one earth are you pulling because it conceals anyone from knowing what the designer is up to. WHich is against all ethics

then it turns out they don't know the illness properly when they describe it and choose how they do their levels and write their questions

This isn't far different in ethics from researching on children and giving a gazillion questions beyond their concentration span for something that will affect their lives significantly.

Why are there no legal protections on this (I know market research guidelines would have a field day on it as inaccessible and inappropriate given the exertion-based condition to be as it is due to risk of harm), and if there are why on earth are they not being implemented on this? And what do these three people think they are doing? Are they that deluded they really think they aren't harming severe people when they pulled out three surveys with so many questions? Are they mad?

This is unsafe and mired in disability bigotry issues. And ethically dubious.

 

I’m level 4 but only moderate ME

 

Actually, what did they base their design on? For this latest questionnaire? It does read like they’ve just thought it up in a meeting, rather than basing it on actual fact/research.

And speaking about “re invent the wheel”
these questionnaire, they are being created so there’s a data set? Because NiCE said there should be one and there wasn’t.

Why couldn’t the Decode ME data set be used, the largest ME dataset in the UK, they’re open to working with others and the permission was given by patients and and and…why not?

 

there is nothing at all to make their data set representative of the population ergo not externally valid. Particularly with such an accessibility issue of it being only those who are prepared to consent to all of that, and can wade through 98 questions, or those who can't but did them half doolally anyway (validity issues there).

I can imagine DecodeME (which is valid) would very reasonably have careful safeguards over who uses such data and under what circumstances. But yes, there would/could have been better ways of doing this.

 

What a mess .

 

The notion of sensory sensitivities as something that only applies to the bedbound is something I'd also challenge.

I'm "severe" as defined by the NICE guideline, and I'd probably plump for level 4, being mostly housebound, but I've made lots of adaptations to accommodate sensory sensitivities - blackout blinds & curtains, the "night shift" options on computer screens and phones, silencing phone ringers and other devices, and lots of other ad-hoc or bodged-together solutions - to accommodate those; the questionnaire seems to assume that those would only apply to the most severely affected of the bedbound, which isn't true in my experience.

 

indeed, i have no idea why they think sensory issues are only a problem at the very severe end - probably because BACME consider them to be a problem of exposure (or lack of) & therefore would assume they werent an issue for those not bedbound in a darkened room.

Sensory processing became a problem for me at their level 2!

 

Agree, and I thought that most indeed have variations on this. I'd go as far as it seeming 'contrived' to the idea that only exercise 'counts' as exertion up until level 5 where they've melded bedbound into only those who are very severe.

convenient if you are a bit one-dimensional to the point where you can't 'see how a questionnaire can harm' but then if forced to slightly come down on that use the old fallacial get out of jail 'of course maybe the most ill' exception. Sort of like someone wouldn't get the choice between have a shower or watch a film. Or how noise pollution could scupper ability/energy to eg do a shower or toothbrush.

I'm very concerned that anyone is asking about single activities at all - to me these all sound like the most irrelevant 'in theory' thing ever because 1. it depends what else is going on, and 2. it depends if someone is happy to suffer different levels of impact and is interpreting that within their response I'm sure there are many more here (that the 'adapt' doesn't sufficiently offer caveat for.

What use is it if someone says they can walk round the block when they mean they wouldn't be able to lift their arms or even watch TV for a week after that and would have symptoms beyond that for even longer, when another is talking about their limits accommodating for the 'and obviously on a normal day where I'd brushed my teeth, maybe showered and dressed and gone to work' and the thing that makes it vary is who cooks dinner, or how busy work was vs someone mild who doesn't work and lives in a quiet area with support at home being able to schedule a short walk round the block twice a week. But a long visit from someone popping in could scupper any of the above. Is there specific instruction for each of these questions to cover this and make sure their questions are indeed internally consistent and valid?

I understand no scale will be perfect but I can sense some false assumptions embedded into here. It does seem strange if it isn't related to PEM / the threshold of the condition at all. Just from a basic 'what are you measuring / research question' ie point of research at all (you start with the 'research question' then define what that means you are measuring) point of view. I'm sorry but there is no 'gap analysis' that can accommodate for not being explicit in what they are measuring here.

Is this just a rehab scale feel from those filling it in?

I do think that the MEA should have required that there was some genuine experiential experience from this group in understanding the different severities and more severe end before they went anywhere near being allowed to do this sort of thing. It feels like PEM has been misunderstood or understood on very different terms and then proliferated as if that very individual understanding of something applies to the other levels of the condition - rather than them needing to have begun the other way around to put that individual experience into context / the bigger picture perhaps. It's a common error to start with the 'simplest possible' even if it is the rarest and actually least useful start point (easier to knock bits off the 'sum' than other way around).

Perhaps the MEA might think about putting together some sort of course / experience that those who want to claim understanding and undertake things like this of such relevance should be required to do as proper learning prior to getting funding. How you get the penny-drop and maintain safety of those most ill I don't know without just wasting their health, but there seems a big learning gap. I know there are some courses for eg GPs but for researchers there are some fundamental 'get it or don't get it' bits that sort of need to be checked or provided for?

 

It’s ok, they’re going to email everyone who takes the survey again, in a couple of weeks. Why? “To see how answers change over time” apparently.

But it is an “at present” snapshot of an average day this month. And they want to see an “at present” snapshot of…the following month? To see what? What changes with no treatment or support?

 

what on earth is it that they think this illness actually is?