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

PEM - symptoms vs function

I haven't given this much thought but I think it would be very worthwhile investigating if the FUNCAP could be adapted to catching the impact of PEM (it's designed to measure baseline function but I think it could be adapted).

Measuring a drop in function during PEM is, I think, more informative than measuring symptoms. Looking at the symptom list posted by Andy I have almost all of them when well rested and they all get worse during PEM. Which doesn't tell us much.

 

PEM vs other forms of exertion intolerance

There's a lot of discussion on this in numerous threads and Trish's analysis is excellent. I urge you to read as much as you can on this if you haven't done so already, including the discussions about the weaknesses of the DSQ-PEM. The PEM issue is important to get right because applying the label of PEM to all manner of (post-)exertional effects has long been, and remains, at the root of massive confusion and misunderstandings.

Yes, many pwME experience early fatiguability during exercise and DOMS and what have you - but that's in addition to classic PEM with its weird temporal pattern of delayed onset and/or delayed peak combined with its unusual constellation of seemingly unrelated symptoms. We don't know the connection between the former types of and classic PEM but it's important to keep them separate to reduce misunderstandings. Many illnesses feature early fatiguability during exercise or DOMS or slow recovery from post-exertional fatigue. Only ME and ME-like LC appear to have the classic PEM.

It's fine to ask about all types of exertion intolerance but classic PEM must be clearly separated from the others.

 

PEM triggers - physical, cognitive, social, emotional, and mixed activity

The terminology is very subjective. One person's moderate is another one's slight, and the assessment is likely to change over the years as people get habituated to their new normal.

Almost all activity is mixed, whether we realise it or not. Many people have strong opinions on what particular single activity caused their PEM but in most situations there's no way of truly knowing. We tend to attribute causality to the most salient recent event but it's much more likely that event at most was the straw that broke the camel's back and the real issue was cumulative exertion. So the data you would collect by asking about nicely separated triggers would just be a bunch of guesses at best. At worst it'll guide patients and doctors on a wild goose chase of trying to identify very specific single events and remaining confused by the unpredictability of it all because, depending on preceding cumulative exertion, a specific activity is fine one day and a disaster another.

Not sure on top of my head how best to approach this but I would start by thinking in terms of the cumulative activity of regular daily routines within the (somewhat fluctuating) energy envelope.

Of course there are times when a single activity is so far outside the energy envelope there's no escaping PEM no matter what but these aren't difficult to predict. It's the day to day stuff that's tricky

 

goal setting and treatment planning, and monitor changes

The term goal setting is toxic given the history of GET. Just don't go there.

Treatment planning is currently a non-issue because there is no disease-modifying treatment.

Both can be replaced by 'disease management' which can involve sensible goals like putting in place support systems to enable more effective pacing, so yes, technically that's a goal, but better not call it that because the term plays into people's prejudices.

***The End*** (phew! )

 

Thank you @Ravn for so succinctly summarising this.

 

OK, but what is the clinical assessment for? If we have no treatments that we know depend on such assessments I would have thought it more useful to ask 'How have you been doing since I saw you?' 'Any particular things that have changed?'

 

And is anyone going to do it?

I've never had an assessment, and nobody monitors me the way the rheumatology and asthma clinics do.

 

No, of course I won’t be doing that. Don’t be silly. You haven’t actually presented any evidence that the project would be unsuccessful, or any rationale why completing a questionnaire would cause harm, which is clearly implausible. There is merely a link to a paper which examines the use of two assessments of health-related quality of life as secondary outcomes for long-term follow up over two years in clinical trials for people with MS. The results merely show that specific measures of physical disability are more sensitive to changes in physical disability than measures of health-related quality life which include assessment of physical functioning, physical role, pain, general health, vitality, social function, emotional role, and mental health. (in the case of the SF-36) and activities of daily living and wellbeing in the case of MSIS. A result that will of no surprise to anyone.

This has no relevance of to the use of a measure of post exertional malaise in clinical practice, which is inevitably short term compared to the time scale of this study. If you would like to find out more about how clinical assessment tools can ‘work ‘ in practice, try these.

· https://doi.org/10.1177/026921551456259

· https://doi.org/10.1177/0269215514562590

· https://doi.org/10.3109/09638288.2012.709305

· https://doi.org/10.1016/j.socscimed.2008.03.006

· doi:10.1186/1472-6963-8-217

· https://doi.org/10.1177/0269215509341527

· https://doi.org/10.1080/09593985.2022.2092801

· https://doi.org/10.1186/s41687-018-0061-6

· https://doi.org/10.1136/bmjqs-2013-002524

I am not engaging with this thread any further now. I had joined it in anticipation of a constructive, critical discussion which could help progress the project and use of measurement tools in ME. Instead, I have been met with diatribes of, frankly, hysterical projection, catastrophising, conspiracy theories, overt hostility and insults. This is the sort of nonsense that given people with ME such a bad reputation, and I have no interest in being further involved.

 

Given the paucity of studies into PEM what can we say about the duration of PEM? Given there are many anecdotes of the impact of PEM lasting weeks, months, years or even indefinitely, I suspect it is premature to consider its effects as relatively short term. Further I suspect we need more agreement about terms to distinguish PEM from short term fatigue effects in whatever modalities involved and from long term relapses/worsening in the underlying condition.

 

This is exactly what I tried to provide and I spent several days working on it in 10 minute chunks, putting aside other work I could have done instead. I highlighted things I thought were well-done, points I felt were unclear as well as areas that could be improved with suggestions how. I did this because, as I stated in my first post, I believe better PROMS are necessary. In the real world PROMS are being used whether we like it or not so they need to be as good as possible. Looks like I wasted my time. And I really don't understand how you could have misinterpreted my posts so badly as to judge them this harshly. I appreciate that being on the receiving end of criticism for something you have put a lot of work into is difficult, been there, done that, not fun. But that's the nature of honest feedback. If you disagree with my points, fair enough. If you don't want to engage, that's disappointing but your prerogative. But I don't accept those last comments of yours. They're completely undeserved and very hurtful and an apology wouldn't be out of place

Even if you don't feel able to engage any further I hope you can continue to read this thread and reflect on the points made, in the spirit they're made namely the wish we all share, to make pwME's lives better