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

If these lot ever have a read through Visible’s daily check-in questions, they’re going to feel pretty silly spending so much time writing the same ones.
It would be great if the new patients facing this guff say “oh let me show you my data for these questions, I record it daily and my Visible app makes it into a graph. Do you want to see a week, month, year? Just scroll through the chart!”

 

For anyone who hasn’t seen Visible here are some screenshots of the evening symptom questions. N.B. There are set core questions plus you can add your own if you wish.

 

And this is the interactive auto-generated trend comparison tool in the app. I can compare two symptoms if I want.

 

There is a big flaw because I would need a ‘very good day’ to even think about filling something in even with help.

even when I was moderate my PEM days I was fast asleep or in huge amounts of pain desperately trying to rest. And the difference was huge between just had a week of rest days and PEM days.

I’ve never been mild but have concerns that someone’s conception of what PEM is might be limited due to personal experience. If only I hadn’t had to count as my ‘good day to do the stuff I have to catch up on’ the days where I’d only had those smaller by comparison symptoms that I had to just shake off and not acknowledge because it’s been my whole life so I’ve not had that ‘I used to feel fine at 3pm on a work day’ comparator.

I think so many have this slow, creeping , unacknowledged so keep getting on with it type vs the conceptualising as if you have a normal then ‘something jumps out’ is an issue when most are in rolling PEM. It makes for questions that are hard to complete well and mean different things to different people because the homework hasn’t been done on writing them due to what I assume is confidence falsely placed in ‘having the condition’ means you understand the spectrum even though you haven’t experienced it all and can’t possibly know the different situations people are in. Or interpretation they will take without testing it. Did they test their questions were understood unambiguously through accessible groups where they were open-eared?

 

So I’m showing this because I feel that these PROMS by the Rehabosaurus brigade are already out-of-hate. I see them as dead-in-the-water, they have no power. The new people who will be facing them already have Visible or other apps to track symptoms like Bearable, heart rate monitors/fitbits.

 

You see I don’t mind this - it makes sense that we don’t want to be requiring people to give over live monitoring data if their lives to an agency. And all the calibration stuff from different apps.

so filling in questions where peoples answers can be informed by their own app and experience of using it is in theory a best fit work-around. If everyone is doing it and is helped to do so. Certainly in relation to other questions that social pressure hugely influences and so on.

and if those end up being the questions used in the right way and order - so they don’t switch the cart before the horse.

the thing with an app is that it can hide that something that happened after (crying) can’t have been the cause of the thing correlated with it (friend mean mean) or in our case [rested and had no other stuff] felt better—> could do more/functioned better.

and THATS what’s being lost in this method.

you have PEM which happens in the days after (maybe it goes on for a fortnight - big PEM even more)

and deterioration from cumulative overdoing - which might even be skirting triggering PEM to the extent someone notices due to the ‘feeling good from pushing limits - which hits at 6-12months.

so that would need a total fir the exertion over that entire time and then a measure of function much longer term.

I don’t get what testing one day one month later has to do with the illness AT ALL?




PS and yet I know from doing these things myself their language shows they clearly think they are being really clever and specific with that. But to a model of ‘a condition’ (I don’t think they call it illness?) that’s what?

I think sarah forgets that when she works with strokes then normally (or it should) the stroke itself has been dealt with and it’s now ‘an injury’

if you’ve an illness that has been treated like cancer it’s the same (except chemo might have played a part in said injury the cancer has been treated)

if you’ve an illness with illness-moderating drugs THEYVe stopped that underlying ‘mechanism’ from being there making things worse.

this seems like a measure missing the point that it’s a live untreated illness - and has ignored the one mechanism we know is now the cardinal feature in its design focus.

Yet seems very sure it’s doing something clever and I want to know the details of what’s behind them thinking that’s clever ie their ‘view/model’ they in their mind are actually thinking about. Transparency is important here.

 

I stopped tracking symptoms. It was a lot of work. I learnt a bit but it’s easy to get too focussed on things. A little light weight monitoring may be useful but…

For my condition/severity and I think for many, seeing how I am ‘over the last month’ is a pretty pointless metric. It’s a lot of questions to be focusing on and thinking about every month too.

One question would work for now, ask the patient if what support they’re getting is helping them. That’s about all we need to ask and ask every person with ME in the country. More fine grained is currently only really useful in research.

 

Regardless of how useful it is to track the symptoms, my point is that the people who will see these questionnaires in the NHS clinic will be mainly under 40, mild or moderate and likely already doing this stuff for themselves on an app.
Someone giving them a paper handout of virtually the same thing is going to look ridiculous, outdated and pointless. Which is a good intro to what they’re about to experience.

 

That’s a very good point, thanks for reinforcing it.

I’d add that the problems people with ME generally have with NHS is not a lack of admin.

 

This does not make sense:

adults who have been diagnosed with ME/CFS and also people with ME/CFS triggered by a covid infection.

They are all people with ME/CFS! Also, in the second example it doesn't state whether they need to be adults.

 

Yep they think rather than ‘measuring the gap’ directly they are going to ‘calculate the gap’

but their questions aren’t holistic enough nor specific enough - what level of change and type of change could this question actually pick up?

 

I am actually crying laughing at this

 

Actually this raises a good point for me. The blurb said this paper can be used separate to an assessment.

If someone was vomiting all the time, that needs to be a conversation with a GP or doctor. It isn’t necessarily ME and it does need investigation. Instead, it will be buried under some rehab goals (my goal is to stop vomiting?)

 

For comparison I checked the last ongoing symptom tracking I did which was for a 6 month long HHV-6 study with the CureME team. It had a dozen single response questions on symptoms with two more on if you were feeling better/worse and if you’d changed your meds.

That’s a really good point. Capturing not present/mild/moderate/severe is probably as relevant if not more than how often a symptom was experienced. That’s what the study I mention above did. Even then it’s difficult to compare across patients as our experiences are different and changing, but we can usually explain mild/moderate or severe ‘for me within my current range’.

 

When I used to track symptoms (never with quite as much granularity as this) I never used to track migraines with the symptoms of ME; I had pre-existing migraines, and they followed their own pattern, unrelated to ME severity; I think if you're going to track symptoms in this way it makes sense to determine first whether they are actually ME-related. I'm also not sure of the wisdom of trying to determine the contribution of any one symptom to interfering with activity in this way; individual symptoms might not be very disabling if you could separate them out, but the constellation of symptoms may be extremely disabling.

The suggestion that Long COVID is the same as ME/CFS following COVID is not true in practice. My family knows someone who currently attends a Long COVID clinic (& undergoes "pulmonary rehabilitation") who does not have ME/CFS but interstitial lung disease.

 

especially as the 'snapshot' doesn't seem to have any way of distinguishing between a symptom that isn't currently causing problems because you're managing your days carefully to avoid/reduce it and a symptom that isn't causing problems because you don't have it.

 

So if I have nausea I take prescribed meds to control it, because I discussed it with my GP who gave them to me.

Will the NHS ME clinics be prescribing meds? They won’t, OTs and Physios can’t prescribe.

This TIMES annoys me because it’s on the level of a copy of a 1991 Just Seventeen magazine personality test, to see which one of pop group Brother Beyond is your ideal boyfriend. That is, it’s made up nonsense with no chance of any real-world outcome.

I’d love to see what the “answer sheet” which goes with this questionnaire says (it doesn’t exist. You’ll just be to,d to eat healthily and do sleep hygiene)

I may as well spend an hour with a tarot card reader than at the NHS ME clinic.

 

Agrees with their expectations?

Agrees with their expectations.