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

So there has been PROMS questionnaires callers TIMES, PASS and now MEAQ

one thing I will say is I believe Sarah Tyson does have ME, by the way these things are written it reminds me of my final working months. Disorganised thoughts. Hard to make a point clearly and concisely.

 

I used to have short PEM, as evidenced by the notice I have for visitors advising them what to do if I experience it. Now I have short-lived or half- or whole-day PEM (rarely the latter), but it tends to come a day and/or more after activity if not short-lived (hope that makes sense).

 

PEM for minutes?

 

Yes, I think so, or maybe it's just mental fatigue - I go blank, and it's brain-fog type - I feel as though I'm trying to get out of a fog, and after a few minutes I can think again.

 

Yes, I get that, but I don't call it PEM. I'd describe PEM as more all encompassing, and it doesn't just go, I don't just come out of it, it takes a long slow time to get back to where I was before the PEM, days, weeks, or months. I think we (pwme, ME community, researchers etc) have real problems in defining PEM, with different people defining it quite differently.

 

Me neither, PEM makes me ill. Isolated mental fatigue or fatiguability is a different thing.

Perhaps we all have a slightly different understanding of PEM because it manifests differently. Whether it's a bit of minor overdoing-it or a hideous crash that will last months, mine always starts with swollen glands and a sore throat, so they are defining features. Others are a wonky internal thermostat, body-wide aching, hyperactive bladder, and a mental inability to join the dots.

It doesn't matter how mild or short-lived PEM is, these things will all be there at some point on Day 1. It's always delayed, too, it's never happened on the day of the exertion.

 

Has anyone very studied PEM (PESE) or done actual research on it? It does seem to suffer from a lack of definition. Interesting that other people get different symptoms. I’m a flu-like symptoms & swollen glands (that aren’t swollen) myself.

 

It is, but feeling ill seems to be common. People sometimes experience infection by the same virus differently, so if PEM includes some kind of immune ... 'thing', it's probably not surprising.

 

what strikes me is that where the illness is at post 2021 guideline is apparently that not much is known by the profession and certainly things like PACE and false beliefs need to be deprogrammed as are harmful and really let's be honest common-sense wise destroying of the soul to have people who are like that (which is abusive of the individual by not believing or listening to them) in front of patients.

So absolutely the next stage if anyone was 'of good intentions' would be a 'learning' one - which involves listening and watching to learn about the condition with a genuinely open mind to hear from patients and see the information coming through. SO they don't repeat the same lazy nonsense and presumption causing harm.

I'm sadly not surprised at suddenly feeling there is a reversion to bad habits of wanting to get to 'the staff telling' and 'goal setting', albeit with a few buzzwords that mean nothing because they aren't doing it thrown in like 'tailored'.

We all innately 'set goals' in the way these people talk about because we had to get through life and in the short term had to eg drink a load of caffeine and do whatever other things woke our brain up in the short term in attempts to get x done. Shame that I never realised that it was probably physical activity on prior days that was causing this for so so many years, although if instead of being hounded and surrounded by people 'at me' I think I probably was sorting of knowing deep down and there was a definite sense of me needing to eg get things photocopied so I could do work in bed rather than trying to sit in a library in an uncomfortable chair (I thought was the issue) and be away from the continual stream of caffeine needed to stay away.

My point in mentioning this is that those who have chosen to bound themselves up in a BPS model that says all these things (like caffeine and sleeping at wrong times) are wrong - it isn't a health model at all, but a judgement based on a sub-set of populations decided 'should' and norms - they get distracted by picking out the things that are keeping someone going towards their most important things, and don't see the cause. In fact as the BPS model as re-envisioned into its silly cicular nonsense used by Wessely it is entirely not cause-effect based, but a big old circle (which at the time made it not a model, just a circle, because it couldn't be tested - as most other even mental health treatment models could).

So they've been taught to think the opposite of the right way - where they can understand if someone feels awful can we trace it back to that consistently having certain causes before-hand? the time-lag thing. It just tells them to look for people's bad behaviour. THen give em random goals that you make them get towards by motivating them.

All these aspects add up to it being chucked into a culture that cannot possibly use it any right way. And I don't understand how they can be understanding PEM and be 'of use' without looking at what people do that is causing PEM - to understand it themselves. I KNOW this, because like any other pwme whose had it a long time, we go through that learnig curve ourselves.

 

Here's the thing with goals and what she is measuring here (and it works like research, where you have the 'research question' that then becomes so what 'questions' do you ask in order to answer that):
1. people will have their dreams (getting better to go on holiday, have a career), sub goals (get to toilet myself)

2. ME/CFS is counter-intuitive so to improve in order to get to said goals you probably need to decrease activity

I'm gettting smells from this activity questionnaire (and I'd like something along the lines of this simple question put in front of the MEA to consider) that this all ignores point 2. and we end up with the same old - because I see no safeguards here at all, and we know who the staff are - 'pat myself on the back for forcing them to get to the toilet themselves' and then who cares if their condition is worsened by that.

Or 'well done me I told and encouraged them to increase activity' whilst all the people who are pros in ME are banging their head against the wall because in 6months time that person will have been caused to deteriorate by that 'manufactured' and coerced increase. And I say coercion because the fact she intends these to all be reported to every enforcer going says there won't be anything thicker in coercive forces. So it also can't be true under those circumstances, other than an outsider using their model to predict what are these forces requiring this person to do otherwise x perceived threat happens? well I predict that said subjective survey is requiring those answers from them.

 

and ripe in the bigoted to self language in an attempt to stay accepted. You might well have a point there.

The difficult thing is she is working with Pete Gladwell who certainly doesn't have ME/CFS (and definitely knows what he wants given we've traced his wanting PROMS back to 2013). And someone else who is 'just focusing on the stats' but who doesn't get ME/CFS as well as being independent, and it is a condition of nuance. SO will likely require tweaking to statistical design in a way other conditions and certainly most of the uses of PROMS before (like has the knee-op worked and been rehabbed in 12weeks or 10) won't accommodate. But many naive to the condition 'just think you are being pedantic' whilst you are saying 'but the issue is that's the penny-drop, so it's more like missing the point if we don't get the angle right'.

You pointing out that in itself makes me aware of reasonable concerns regarding power differentials (even if someone has intention to include 'what they think that person would want' that isn't the same, and they mightn't realise the impact of having to take a decision/vote when you just need to get home to bed) and pushing someone to try and see wood for trees on the 'and what was our vision when we were going to cut this down to put it together into something genius' type stage. It took me years to admit and see how vulnerable I was, although I felt it in those situations, because your self-identity is rightly based on who you are which isn't expected to include when delay/procrastination/project stringing out etc means you are ill just like someone wouldn't see themselves as not a strong driver who doesn't car if they've left it 'half a mile from the kerb' just because they wouldn't be great at a parallel parking if they had the worst day of flu.

 

Tricky isn't it. I'd describe the PEM-type cognitive fatigue / 'brain fog' (which is why that term is unhelpful and almost makes me laugh) as wondering whether there is a carbon monoxide leak and you've miraculously somehow 'woken up' after having slept in it ie still alive but nothing can actually move or wake. It's not a 'fog' and not a 'motivation thing' (because it feels like locked in at that point, you are wanting to move, and it isn't your body not getting the instructions either), I'm not 'out of it' and inside my brain will sleep and I can think to myself, it's definitely like something pretty key is missing in your body once you've had it enough times.

When I was in a routine, more well and managing my energy so not going so far over limits then it might lift by 2pm. I remember from the days where I was at uni then I'd have it for 3 days on end and even then I eventually learned that if you try and either work through it (useless, you can't!) or whack enough caffeine down your neck (coca cola because you couldn't get to a kettle, scrape to put tv on and turn it up which could in itself take many hours maybe over 24hrs, same for slowly raising pillows then sliding back down as ill) then the 'awake brain' part never happens to the point where it's more than thinking you are reading but then 3 lines into a paragraph realising you haven't read it, then all you do is extend the PEM. But you've a deadline so it's very hard to be patient and wait out 3 days, and you certainly aren't in a fit state to be writing emails or making calls explaining it.

NB this is only one 'bit' of PEM here, which has lots of stages for me too! but thought worth noting the cognitive fatigue differences.

Cognitive fatigue on the other hand can contribute to this, but is very different indeed - now that it happens so fast you can see it in a conversation where it very much targets the word-finding and grammar and particularly summarising/direct responses (cruel irony, as every word and second makes it worse but you can't 'be short') and I can hear and remember the exact questions levied at me, but shouldn't be being expected to respond to them at the time.

When more well it was a shorter and more subtle version of this which you could cover better in an office situation with a quirky personality and others who get tired etc. but suddenly finding you can't add a simple sum or you can't say two names in the right order might be 'somewhat shortlived' seeming ie a few hours and you get home and can sleep (but then I would have that probably contributing to said above next day PEM). I'll be honest the word-finding cognitive fatigue even then was so common (and well-covered by me it was seen as a quirk) because I was constantly over-threshold I couldn't even add it up easily.

 

I had a medical appointment today. I’d tried to ask in advance how long, no info. I travelled a long way there, early. They wanted me to be there an hour. I said no. Then we had a lot of negotiations (you need to listen to a lecture!) I asked for books or websites to learn at leisure. They did relent and have me done in 10mins, but I just had these same explanations with a different HCP two days ago.

Anyway, my point is NO HCPS GET IT and I for one am FED UP of the MENTAL LOAD of explaining it to them. Shout out to Visible for helping me, I showed them I was in red and I’d used half the days points by 11am just getting there, and that did seem to focus them.

 

Informative that one - the mode of learning chosen indicates to me that it is either someone's beliefs (they won't do it, worse assumptions that are incorrect on people 'learning') or more likely it is more important to be able to confirm it has 'been delivered correctly' than 'it has gone in'.

If it were the latter, and someone was up with all the research in other areas, nevermind being able to think about the impact of the health conditions themselves and journey, they'd know that people have different ways of understanding information.

Very good segue there to PROMS 'measuring delivery'

 

Oh they reiterated that they had a duty to deliver the information “to everyone” and this was the best way to do it. In fact they repeated that every time I said “you need to accommodate my disability, I can’t take part, you need to find an alternative for my disability”

 

I'd say predictably those comments have fallen on deaf ears. Nothing has moved on from 'the therapist knows best' and 'the rehab professional knows best' - and as demonstrated right here on this forum, ME patients who disagree with therapists/rehab professionals will be told "Don't be silly" (the quote from Sarah Tyson).

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