Factors Affecting the Characterization of Post-Exertional Malaise Derived from Patient Input, 2020, Holtzman, Jason et al

rvallee

rvallee

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Factors Affecting the Characterization of Post-Exertional Malaise Derived from Patient Input

https://digitalscholarship.unlv.edu/jhdrp/vol13/iss2/5/

The National Institutes of Health/Center for Disease Control and Prevention (NIH/CDC) Common Data Elements (CDE) established a post-exertional malaise (PEM) workgroup with the task of describing PEM and recommending a standardized way of assessing it in patients with myalgic encephalomyelitis and chronic fatigue syndrome (ME/CFS). As a stigmatized group, patients with ME/CFS are in need of instruments which can properly describe their symptomatic experiences, which can help reduce the disparity between illness seriousness and appropriate attention from healthcare. The current study explored attitudes and preferences among 115 patients with ME/CFS who participated in the creation of a patient-driven instrument to measure PEM, the key symptom of the illness. Themes that emerged from the qualitative analyses of patient feedback focused on how their illness was experienced; their access to care; problems with physicians, researchers, and research methods; and expressions of gratitude for the collaborative process. Domains that were most important to the patient community were identified in the effort to create a comprehensive measure of PEM. Benefits of community-based action research are discussed.
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(This would normally fit in research but is neither psychosocial nor biomedical, perhaps a category for research on clinical care is needed?)
 
Whilst I appreciate all the effort that LJ and others have been putting into this, I wish there would be more investigations to find out what exactly is happening in the bodies of pwME to produce PEM.
The idea (that has been expressed by many others including myself) that whatever is going on is cumulative should be also be considered and looked into.
As has been shown/seen time and again, descriptions of symptoms can be prone to all kinds of bias/influences, mis interpreted and potentially misused, no matter how well sourced.
 
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Sly Saint said:
Whilst I appreciate all the effort that LJ and others have been putting into this, I wish there would be more investigations to find out what exactly is happening in the bodies of pwME to produce PEM.
The idea (that has been expressed by many others including myself) that whatever is going on is cumulative should be also be considered and looked into.
As has been shown/seen time and again, descriptions of symptoms can be prone to all kinds of bias/influences, mis interpreted and potentially misused, no matter how well sourced.
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Just off the top of my head, I'd propose moderate patients (ie mostly housebound) wear fitbits for 3 days and attend a clinic for 3 days in a row where they would have a blood sample and saliva taken.
They could also complete whatever questionnaires that are currently available for PEM.

I know that for me at least, just the effort of going to a clinic three days in a row would almost guarantee PEM.
 
I don't understand how a facebook chat with about 100 ME/CFS patients, most of whom made only 1 or 2 contributions to the discussion, and one person made 92 comments can be written up as useful research. Surely such a skewed input can not be useful for its purpose.

DISCUSSION The objective of this study was to use community-based action research using qualitative analyses to explore the themes surrounding the development of a patient-driven, comprehensive PEM questionnaire.
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All very laudable, and I appreciate the effort, but the list of themes seems to completely miss the point. Lots of it seemed to be more about the social consequences of PEM and problems with professionals and attitudes and interactions, which are all important areas in care for people with ME, but have nothing to do with defining what PEM is and what triggers it.

And there's stuff about what the symptoms of PEM are, but to me PEM is about exacerbation of symptoms and recurrence of ones not present except in PEM, rather than whether my PEM happens to include a sore throat or a headache.

It is good to see recognition that PEM is not about fatigue or tiredness.

From the discussion:
The data used in this study were instrumental in creating a comprehensive assessment of PEM (Holtzman et al., 2019; Jason, Holtzman, Sunnquist, & Cotler, 2018). Over 1,500 patients filled out the new measure within a short period, indicating enthusiasm among the patient community for the instrument that they shaped and designed. Our qualitative exploration of the major themes has expanded our knowledge of the nuances of PEM
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I need to go back and look at the PEM instrument they designed.
 
Sly Saint said:
Just off the top of my head, I'd propose moderate patients (ie mostly housebound) wear fitbits for 3 days and attend a clinic for 3 days in a row where they would have a blood sample and saliva taken.
They could also complete whatever questionnaires that are currently available for PEM.

I know that for me at least, just the effort of going to a clinic three days in a row would almost guarantee PEM.
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I doubt any serious evaluation will reveal much until live-in research facilities are in use. That is a mixed convalescence, for clinical care, and research unit where some patients live and are part of research. It's about patterns, snapshots in time are worthless here, like a single screenshot of a video, what it shows could be entirely misleading if the frames happen to be at the wrong time.

That's expensive. But all the cheap methods have been tried so that's all that's left. It costs hundreds of billions per year so it's not as if doing nothing is the smart economical choice.
 
I've been thinking over the years of a better way of describing our energy envelope, because none of them tie in with being able to push through it but then develop PEM – spoons, batteries, etc. all imply a fixed limit.

So how about this analogy:

Remote agricultural area, where the abundant water supply is from a well and local clear-flowing stream. Life is bliss. Then climate change, and a drought strikes. Now use of water has to be very, very carefully monitored and controlled. It's possible, if really pushed, to scavenge more water from dirtly and polluted sources, which might solve an immediate need, but the consequences over the forthcoming days might be quite severe.
 
Yes, I agree with @Graham that the 'spoon theory' gives a false impression of what PEM is as well. It's not about borrowing from tomorrow's 'spoons', which implies that you just have less spoons tomorrow. But when PWME push beyond their limits they get ill and sick, as well as possibly causing a permanent reduction in their functional abilities.
 
Graham said:
I've been thinking over the years of a better way of describing our energy envelope, because none of them tie in with being able to push through it but then develop PEM – spoons, batteries, etc. all imply a fixed limit.

So how about this analogy:

Remote agricultural area, where the abundant water supply is from a well and local clear-flowing stream. Life is bliss. Then climate change, and a drought strikes. Now use of water has to be very, very carefully monitored and controlled. It's possible, if really pushed, to scavenge more water from dirtly and polluted sources, which might solve an immediate need, but the consequences over the forthcoming days might be quite severe.
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Yes, a much better analogy.

I describe it to other people as crossing an invisible threshold, or triggering a twitchy signal. A bit like Prof. Garner being followed by his invisible speed cameras, but no-one will tell him what the speed limit is. I often don't feel myself cross the threshold/trip the camera at all, so it's not remotely like hitting the wall of the envelope.

(That can happen too, of course – before I got my wheelie my legs would give out without warning halfway across a room – but since I got my late ME diagnosis, I pace more effectively!)
 
Simbindi said:
But when PWME push beyond their limits they get ill and sick, as well as possibly causing a permanent reduction in their functional abilities.
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I think it's possible that some PWME could sustain permanent damage, but I think that's not typical. I can't even estimate how many PEM episodes I've had, and none have seemed to have caused any permanent damage. Furthermore, even after many PEM episodes, I still got temporary remissions that seemed to return me to 100% health. I believe that for most PWME, if we found the right chemical, we could take a pill and switch back to more or less 100% health within hours. A bit of exercise and microbiome rebalancing might be required for full health.
 
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