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! ;))
 
Sarah Tyson has replied to my email:

  1. As the individual is the focus of this assessment, then the level of activity (mild, mod, severe etc) refers to whatever is mild/mod/strenuous for them. The fact that the amount of activity that others would consider in those categories is not relevant
  2. All the assessments in the project are designed as clinical assessment tools, not research outcome measures. At no point have we made any claims about their use in research.
  3. The PASS assesses post exertional malaise, the FUNCAP measures functional capacity. They are two separate constructs. The next assessment tool we will be testing out is a measure of activity/disability/ function
 
My immediate reaction is how can it be used for 'clinical assessment' if the pwME is saying PEM follows very slight exertion, or very strenuous exertion or something in between without any indication of what that means to them at the time or to the clinician assessing them.

To take an example, if someone's PEM is triggered by jogging for 10 minutes, so they rate that as strenuous, and later in their illness walking to the bathroom triggers PEM, and the rest of their day's activity is equally reduced, then they rate walking to the bathroom as strenous.
So what does the clinician learn from this? That their severity level is unchanged because it still takes strenuous activity to trigger PEM?
 
Trish said:
All the assessments in the project are designed as clinical assessment tools, not research outcome measures.
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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?'
 
I agree. Why ask patients to spend 15 minutes filling in a lengthy questionnaire that tell the clinician nothing about what the patient can and cannot do and what triggers their PEM. The clinician isn't going to wade through pages of survey responses in such general terms with no specifics. It makes no sense to me. And if the aim is to provide a summary score, that's just as bad.
 
Hutan said:
That's excellent, Trish. Real life, it's complicated.
Thank you for using so much of your scarce energy to provide that feedback.
I'd add an additional problem to Trish's summary:

the scope for bias, from the patient and from the clinician
Retrospective evaluations are highly subject to bias. Upon enrolment at a clinic, the patient may want to make sure the clinician knows they have a serious problem and so deserve to be there, and so may lean towards exaggerating the impact of the illness on their life. It's

in the clinician's interest too, to ensure that the condition at enrolment is viewed negatively.

After treatment, the patient may really want to believe that things are better. They may not want to upset the clinician, they may want to reward the clinician who has been so nice. If the clinician has said that 'if you do what I suggest, you will feel better', then the patient may want to be seen as compliant and hard working, and so doesn't want to admit that they don't feel better. And the patient probably has made an effort, they have worked hard, and so they think that they should be feeling better.

It's actually quite hard to remember how bad (or good) you felt last week.

Retrospective subjective outcomes measured at one point in time are very subject to bias and manipulation.

I do hope, @sarahtyson, that you will check out the thread on PROMS in MS, linked again here:
The MSIS-29 and SF-36 as outcomes in secondary progressive MS trials, 2022, Strijbis et al
I know that you probably feel that you have to continue with this project now, regardless of the evidence that suggests that it is not worthwhile and almost certainly will harm. I think it would be an act of admirable professionalism to go back to the MEA and say, 'we've looked at the evidence and it's just not ethical for us to continue with this. Objective outcomes are what is most needed'. Could you at least make it very clear that the developed questionnaire should not be used in service evaluations or research?
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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.
 
I am disappointed that our efforts to engage are seen as hysterical, hostile and insulting. We all want the same thing, better clinical care.

If a few of us are forthright in our critiques, surely that is understandable given how appallingly we have been treated for decades, and it would be more professional and productive to help us understand the rationale for your decisions about the design of this questionnaire so we can have a more constructive discussion, rather than damning us all because you find a few individuals' comments unhelpful.
 
sarahtyson said:
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.
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If you believe that, then you haven't been paying attention to the considerable amount of information we have provided to you in this and other threads.

Questionnaires that produce misleading results do harm. Incorrect information leads to wrong conclusions and a misallocation of resources. Surveys asking for subjective responses are highly subject to bias, from patients who want to believe that they have done something useful and want to believe that they are getting better, and from clinicians who want to believe that they are helping, and who want to be seen to be helping.

It's not difficult to understand.

But, I understand that it is very difficult to hear critiques suggesting that something you have worked hard on will actually harm rather than help, and isn't wanted. And it's a natural response to be defensive and call the people who suggest these things 'silly', 'hysterical' and 'hostile'. We have had exactly the same reaction from BPS proponents. It's a shame when it comes from someone funded by the MEA though.
 
· 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
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I had a quick skim through what these were about. Many are paywalled so we can't study them, most are about measuring patients' progress in stroke rehabilitation, clearly not relevant to us since there is no treatment leading to progress, or rehabilitation, in ME/CFS, and anyway the research was mostly about how therapists use the PROMS, not about what patients find useful or not.

PROM stands for Patient reported outcome measures. Clinical care for ME/CFS is not about outcomes of rehab and progress, it's about coping as well as possible. Clinical encounters need to be about diagnosis, treatment of symptoms with medications where possible, pacing education, support and ensuring provision of aids and personal care where necessary. I don't understand where a lengthy questionnaire about PEM fits into that. Personally I'd rather be provided with wearable step and heart rate monitor with advice on how to use it to help prevent PEM, than try to analyse which specific activity might in hindsight have triggered an eplsode of PEM and try to figure out whether to say it's a strenuous activity or not.
 
sarahtyson said:
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.
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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.
 
sarahtyson said:
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.
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sarahtyson said:
I have been met with diatribes of, frankly, hysterical projection, catastrophising, conspiracy theories, overt hostility and insults.
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The conjuction of these two parts of your comment is particularly interesting, highlighting, perhaps that you are unaware of the misuse of catastrophising questionnaires in ME/CFS that definitely has caused harm, as explained very well in this thread:
https://www.s4me.info/threads/let’s-talk-about-pain-catastrophizing-measures-an-item-content-analysis-2020-by-crombez-et-al.13937/
And here's an example of how it causes harm:
https://www.s4me.info/threads/sleep...rimes-and-chalder-may-2020.15258/#post-303121

And it's blatant patient blaming stuff, with Trudie Chalder in the lead:
https://www.s4me.info/threads/the-c...riello-chalder-moss-morris.31651/#post-457625

So yes, Questionnaires can and do cause significant harm to people with ME/CFS.

I am not suggesting the ones being developed by Sarah Tyson's team will cause harm. It's too early to tell what the effect will be. But you need to know that harm is real and imposed on pwME right now, including people dying from being denied proper care because the doctors believe the BPS poison that is propped up by ideas like catastrophising being wrongly applied to us.

Edited spelling
 
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sarahtyson said:
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.
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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
 
I echo Ravn's comment. I spent many hours yesterday at cost to my health to provide detailed feedback. It feels like a kick in the teeth to have our efforts thrown back at us.

If you don't want constructive and detailed feedback, that is your prerogative. I had hoped others would join in the discussion here and give their perspectives on what they thought does and doesn't work with this questionnaire. It is still possible to do so by email to the address given on the questionnaire information, or in the comment box at the end of the questionnaire.
 
I suspect it was primarily my post that caused @sarahtyson to respond so defensively. So, I'm sorry to those members who spent a lot of time writing constructive and well-considered criticisms, for triggering a negative labelling of everyone engaging on the thread.

I do remain rather unrepentant though.
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.
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I think it's really important that anyone developing a PROM fully understands the range of harms a poorly constructed one can cause. That sarahtyson thinks the possibility of causing harm is 'implausible' is concerning, especially given the long history of PROMS doing exactly that for many people with ME/CFS. It also suggests that she was not listening to the very good and tactfully written feedback from other members.
 
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