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

I don't know how many people could answer this off the top of their head unless they were quite mildly affected and had had a definite setback.

 

Bit like that weird "forensic" paper we saw the other day. There is still this idea that they can catch people contradicting themselves and that it means something. And this is from the ME Association so it's not even antagonistic, but the idea that catching people in a contradiction is meaningful, I guess. Even in a fluctuating illness. Even in an illness defined by being wildly fluctuating.

Because this is basically how researchers "validate" questionnaires, and clinicians validate the reliability of patients' responses. Which ironically is not a valid way of validating things. It could be significant to get the same answer multiple times using some instrument. It's what you expect of a measure. But 15C is 15C, it doesn't change, so it shouldn't change upon measure. But they're not measuring something fixed. Subjecting well-being, symptoms and so on aren't meant to be consistent, but the underlying idea that the only valid way of assessing is if it gives the same answer multiple times. Even in an illness defined by being wildly fluctuating. Even from people who should know better.

There's just no plan B, no psychological or cognitive flexibility built into how health care works. They work more from tradition and rote, dismissing the very kind of flexibility that is the basis of true intelligence.

 

I can actually see a use for a measure. Keeping a score from week to week might help more recently diagnosed people work out whether they're on an upward, downward or even trend.

It can be hard to get a sense of this because the data are so noisy. Bouts of PEM, coughs and colds, hormonal shifts, IBS flares, stressful events, the onset of hay fever...there are all sorts of things that can make people feel worse than usual, but they don't necessarily tell them what they need to know: whether or not their current activity levels are sustainable.

A simple score out of 5 or 10 for physical and cognitive function would suffice, though, it doesn't need an extensive questionnaire.

 

I'm not sure you do. I suspect it's not for you, it's to justify the existence of a service.

If it were for you, you wouldn't need a questionnaire. You could scribble a PEM score out of 10 on a calendar every day, and that would tell you whether you have more or less than a month ago.

It'd still be fairly useless in practical terms unless you'd experienced a change in severity and needed to reassess your physical and cognitive capacity, but I don't see why it would be any less accurate.

 

In my experience as a clinician, outcome measures never provided a basis for assessment of service provision. Maybe they should but I find it hard to see how it could have been organised. What happened was that there was properly controlled trials of treatments and those treatments that were found to be beneficial were offered to patients. Nobody expected to be able to tell from outcome measures whether a clinic was functioning well because there were no control observations to allow outcomes to be interpreted.

Surgeons have for a long time had their practice assessed with outcome measures. That makes sense since there have been in the past obvious differences in technical competence and post-operative care quality. But it has still always been a matter of identifying serious outliers.

Recently we have seen service evaluations of things like IAPT psychotherapy and noted how hopeless it is.

I worry if these measures are supposed to be for that purpose because I cannot see any way that they can be made sense of without any control observations - in fact without any well designed trials showing efficacy.

 

what's the saying: When a measure becomes a target it ceases to be a good measure?

 

I wonder if the difference is that there aren't any treatments or drug trials, and nobody really knows how to go about delivering these services? I suspect in some respects it's not even clear what they're for, beyond initial diagnosis and offering management advice to new patients. There don't appear to be any doctors involved.

If it is that kind of model, which possibly has more in common with an alternative therapy centre than a hospital outpatient clinic, maybe it's part of the reason for wanting 'service evaluation'.

 

I think so I am afraid.

For a rheumatoid clinic service evaluation must be easy:

Expenditure £4,765,000
Of which: Drug budget £2,210,000 (controlled trial based, NICE approved - tick)
Physicians to prescribe drugs £650,000 (NICE approved - tick)
Orthopaedic surgical referrals £1,300,000 (trial based, NICE approved - tick)
Laboratory investigations....

Tick.
Carry on guys.

ME clinical service:

Expenditure £2,400,000

Staff for providing a care plan? £2,400,000
Could we manage with a bit less? Does the care plan do any good?
Er, um.

There is a problem but not one solved by PROMS. It is solved by a realistic understanding of the need to provide people with advice and support. Replacing that with an artificial case based on PROMS seems to me very dangerous. We need care to be based on a realistic understanding of the need for advice and support. That is what we based rheumatoid clinic funding on in 1975 and that also allowed us to make progress.

 

I contacted the ME Association over Sarah Tyson's unprofessional and abusive attitude and comments made in this thread 18 days ago. Over the course of a week's exchange of emails, they chose to focus on the difference of opinions over the value of this project, and even went so far as to repeatedly suggest that someone from the forum "provide a short summary of the main concerns and objections to the questionnaire that your members have been raising".

I had to push for them to acknowledge that these kinds of insults

might be something that they might have to address.

My last communication with them was on the 1st March, where they indicated that they were taking the matter forward - since then I have heard nothing more. Given that silence from them, I can therefore only assume that the ME Association condone or otherwise believe that Sarah Tyson's comments were justified. I am beyond disappointed with them.

 

But if we had indulged in "hysterical projection, catastrophising, conspiracy theories, overt hostility and insults", wouldn't we edit the worst bits out?

Investigations of behaviour look at what happened and in what context, and it's unusually easy in this case. There's no need for witness accounts, every word's available to read.

 

They obviously didn't want to address the behaviour and wanted to focus on the disagreements about the project - it was a deliberate re-focus.

 

Thank you @Andy for raising this with the MEA, I had foolishly assumed that Sarah Tyson would have returned to try to resolve the issues once she had reflected on this. But I am more disappointed if the MEA are deliberately sidetracking this too.

 

This sounds like a really great proposal @Trish

I use a bullet journal and there seems a large chronic illness subsection of that community

I use a monthly tracker and include a sleep tracker and boxes for visible score, mood, pain, fatigue (the latter on a 1-5 numerical score where 1 = normal for me and 5 = crash / unable to function due to MH or pain) IBS, whether I managed to shower or get down the stairs (I live in a flat) and I photocopied it for my most recent PIP

I can also add notes for my asthma / anxiety / painkillers etc

because I keep daily notes of activities I can see why each of my measures has tanked or improved

Edit to add: I also wear a smart watch which shows that LC left me with that weird "not quite PoTS random heart rate spikes of triple figures" thing that no one seems curious about investigating.