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

haha

I remember those! from a bit earlier, it was Duran Duran in my era, but still...

 

Actually their drummer toured with Duran Duran after the split…

 

Those levels don't work for me - I'm mostly housebound but have no help. If I had help, I might be able to get out more, or focus on 'activities that are important to me'. Also, I don't find the distinction between PEM and the first four symptoms clear enough.

 

I had most of these symptoms before I got ME.

 

This is very true and why I get so sick of being asked about my symptoms.

 

This is really well put. I might add the inverse too.

For example I sometimes get bad migraines I didn’t get before ME, but you know what, I don’t mind too much if the other symptoms I have are ok. The aura goes, I may have some nausea, I just give in to it and lie in a dark room for a while. Now, I don’t know for sure these migraines are ME linked, my mum developed migraines at about the same age. If I didn’t have ME and was as healthy as I used to be, but did still get the migraines, I would probably consider them disabling on their own.

 

There is also the issue of what does all of this matter if really you need to know if people are better, worse, same/similar and then probe on how.

I have concerns that this will use a symptom list that won't be exhaustive and won't be relevant to many, and so certainly doesn't describe when whatever calculation is done an accurate assessment of whether someone is better or worse.

And that's hard enough to work out in ourselves anyway. I'm pretty sure my ME makes me at least susceptible to migraines - feel awful then the light triggers it or whatever.

There should be a worry with collecting information - both missing useful stuff or getting it in the wrong form and also the wrong stuff. I also don't think you can look at what is needed for a proper decent medical consultation easily in the same project as you want it to be used for research or for agencies. And then there are concerns of it being accessible to people exhausted - as it is supposed to be for ME/CFS not the other 'fatigues' or 'PPS' who shouldn't be dumped under that category just because they ended up at those clinics which shouldn't be the same perhaps anyway.

If I haven't been able to shower for 9 days but all the listed symptoms don't really happen to gel with most of mine and I'm flat on my back feeling dizzy like someone with flu who just tried to go to the shops before they were ready each time I find the pillow doesn't support my head enough asking me to list all of those other things I might feel is a laugh.

I mean I imagine all my usual joints are all rheumatic and I've headaches and whatnot but comparing it to a headache I got when that was my main symptom and struck me like a train on a good day wouldn't be easy anyway, but when you are that ill...

They seem to have forgotten some golden rules which include whether people will be qualified to answer the question. Prompting them for things they don't normally have or are far down their list when they are really ill and don't have a lot of energy isn't ideal as an idea.

If it had stuck to its knitting and thought that it was going to prioritise clinical assessment then the next question would have been to think actually what is the illness and what's the most important thing to communicate and it will always be that holistic score. Then the classic 'anything new' and the better/worse on that persons common symptoms.

Why do we, as some of the more fragile people in trying to deal with an appointment being a big thing for us, have to end up with something new and harder?

Is this going to be another accessibility barrier for those who are too ill to be filling these things out - particularly if it is going to be allowed to be used elsewhere, so could preclude access to other agencies or things to those who can't fill in said form. I mean I get the idea of a one-off, but context matters when people are describing things too.

What you'd mention to your OT (because it could be helped by support or adjustments or equipment) isn't going to be the same as what your doctor needs to know. It's highly relevant if you are in agony but it is because of having a big journey for an appointment 6 weeks ago vs came out of nowhere to know that context as expected vs unexpected matters.

And if it were proper clinicians then you started getting migraines out of nowhere or some other alarming symptom that could be medical something else then it needs to not be buried and hard to find.

As probably the group that was designed to have no access to healthcare and investigations and that messaging still being pushed elsewhere and hard to change beliefs so many mightn't have a GP checking on urgent other stuff assuming it's all ME, there is a really vital duty of care safety issue that these clinics are set-up to pick up on and at least report back a flag that it shouldn't just be assumed and not investigated if someone's blood have gone weird or they are getting a strange new symptom that could be something else.

 

I’ve always had migraines. I do track them as they are very disabling (always have been) so I think they they impact my other symptoms and they take a day or two to recover from.

 

That's exactly the point I keep labouring. Hospital consultants use all their training and experience to frame their questionnaires, and most seem to arrive at the same one.

"How are you doing?"

They probably know that when people are faced with long, dense questionnaires, their priority often starts with answering thoughtfully, but then shifts rapidly to getting to the end of the bloody thing.

 

Is the data this generates going to form the “data set” which NICE said was missing? What was they required for?

will patients be giving informed consent for their answers to be used in other purposes?

what about symptoms that haven’t been listed?

All this tells anyone is “people had symptom X to some degree at some point in the past month” and assumes that symptom was because of ME.

People have blurred vision and headaches when they need an eye test. Women have nausea when they became pregnant. Etc.

 

I keep thinking of this cartoon, 'You Get What You Measure' - especially re bobbler's question "Is this going to be another accessibility barrier for those who are too ill to be filling these things out?"

 

If they really wanted to know what symptoms recent-onset people have, they wouldn't prompt them at all. They'd ask them to describe in their own words what symptoms they have and give examples of how they affect them.

Sure, it could be followed by a process of unpacking; trying to work out whether there are aspects they struggle to pin down or describe fully without help (e.g., the difference between fatigue, fatiguability, and PEM).

But the problem with offering them @Eleanor's fishing nets is that they'll want to conform by only describing fish. It's a great way to end up with a crazily heterogeneous group of patients.

 

You can’t go about asking patients what’s wrong with them. Much easier to write a list and get them to indicate the strength of what you think are the issues.

 

This set of questions is very important because it is the cardinal symptom - the one bit the 'new' is supposed to be wholly rejigging everything to focus around that penny-drop. And this is a missed penny-drop at best and a begrudging nod to include the word as an add-on at best. This team needs to watch an Amy Mooney presentation with the flipping the iceberg slides. So that they get how fundamentally problematic this is. The last thing we need is all the measures focused around 'fatigue' again, and 'managing your levels' advice.

It's a real problem the way it is worded because eg an appointment that I can't avoid could put me into significant PEM where my disability level is very different for anything from 2days (very local, very short, very lucky and rested after) to months and not sure you really recover. So asking about 'number of episodes/times' I have to ask why that question?

I could be in PEM and know I've triggered PEM on PEM when I've had to then take a phone call or something in the middle of it, not done that well but exerted myself and so I've just added to my misery. And they've stated outright they want to share this across different agencies so that built-in misunderstanding and miscommunication will be a huge issue.

I'm not sure this is really an accurate definition of PEM anyway. I agree. I think she is mixing it up with fatiguability or just the general unwellness / tiny envelope some of us have. It's more a case of how many hours in a week can I think of doing anything , and when I do I'm not shocked at the need to finish it early or rest like being done with watching the TV. Or doing something with my arms and them being unusable immediately. Or something bigger like social contact or an appointment meaning I need to go straight to bed. None of those are PEM. They are just my 'new' limits.

Shocking as they might feel, they aren't as 'surprising' as PEM can be because you eg do a day's work that you shouldn't have done (old days, maybe not everyone has to) or just thought you were doing OK over x amount of days but you find out by the bam of getting it/PEM that it must have been too much (or you might have picked up a bug).

PEM's fun because noone understands it and it looks like you 'can' because you 'did' and 'seemed fine afterwards' if they don't live with you to see your weekends etc. But then were ridiculously levels of unable to function for a surprisingly long time.

And the word 'seemingly trivial' feels a miss on accuracy of what should be meant, I get they are thinking maybe you didn't realise that (imagining being mild) I'll just put the bin out tonight rather than wait until tomorrow might to someone new to it didn't seem a big enough thing to have woken up 24hrs later in PEM. But the definition of that word is 'of little value or importance' rather than 'wouldn't expect to have been a big enough exertion you'd need to think about it'.

I think in the context of this not knowing what PEM is that word of 'trivial' is a real issue actually. It feels like a whole re-wording of what PEM is to 'being tired after unimportant things'.

 

There is clearly a problem - which should have been fixed - that rather than like all other medical conditions things making sure they fit for and help those who are most severe and ill as the priority, we have something being built around the 'least'.

It's unacceptable and really unhelpful for all with ME/CFS to have this build it around the experiences of the mildest person. It's not kind but saying we don't matter and sticking their own vision of something inaccurate onto us by not doing due diligence. Which will cause harm.

I've no issue with the idea of helping people at those stages so they don't get worse but I thoroughly question the motives of designing a 'measure' that has a ceiling effect that means people actually can't near represent their actual condition in it. I think the word 'disappearing' is even in the title of one s4me thread and that seems accurate.

How heartbreaking to be severe and you can't count or exist because you can't even write down anymore what you have, and only the things in these boxes 'counts'.

As if we don't have enough issues with those who are completely debilitated struggling to access help because those 'don't fit in the right boxes' because of the way help or support would be needed vs eg arthritis or paralysis or 'can't bend'.

 

It feels like a way to end up justifying the PPS 'cos it's all caused by the mind they get random symptoms' clinics and 'fatigue, manage your energy levels' clinics not to measure ME/CFS.

So the PEM wasn't built-in to their design of the way they have administered this process of questionnaires. It isn't underlying why they ask people later

This is a fatigue + other symptoms of their rationing questionnaire with a small add-on that only allows people to say about it 'how many times'.

When even in moderate you could on a good day be 'not disabled' and on a PEM day be 'utterly bed-bound and not even able to be awake'. This would change that to what 1 episode of PEM if that is 2 days work and the rest of the week debilitated because of it. And would the way it is written require someone to describe their symptoms not in PEM even though they are actually spending most of their life in PEM rather than out of it?

I'm starting to wonder what illness this survey is actually for/describing/measuring because it doesn't fit?

 

and things that just happen to be on the list of what they want to deliver claims to cover..

 

they can't be that dumb, and neither are the MEA - this is what/how the illness can 'exist' that is being put down here. It is really serious stuff. And then they make it even more serious by saying it will be used for all sorts of other things, taking away other mechanisms for explaining what you have.

This feels like another slow-moving car crash where we are being allowed to be disappeared again. Nice say that PEM is the cardinal symptom, the illness needs to be measured on the longest timescale, exertion is an issue - which can be cumulative etc. and this gets handed over to people who are allowed to redefine it back to what works for them.

Of course rehabbers want to think of PEM as feeling tired after a seemingly trivial task - then they can just believe strengthening 'tolerance' by 'slow exposure' is the condition being treated with a bit of behavioural to boot.

Utter misunderstanding of the whole thing. I don't believe these people get it is an illness, that currently isn't treated - and understand that means like having any other illness that now has treatment and witholding that eg diabetes, MS, cancer, RA would be - so 'rehabbing' doesn't work the same if you haven't actually fixed the broken leg first, in fact it's likely to lead to a wonky leg

Except maybe it isn't if the questionnaire is the equivalent of providing no box for 'leg gone wonky/worse than before' on the feedback form so no treatment wasn't a success.