Open DSQ PEM survey - DePaul University, open October 2025

I really appreciate the rich & detailed discussion of PEM in this thread. If there is any aspect of my illness experience regarding which I feel I am on a different planet with respect to medical professionals, it's this.

One medical appointment I described PEM, not using the phrase (they wouldn't have recognised it) but described the experience, in as simple a way as I could given time constraints & the sense the professional was disinterested anyway. I focused on the sickness aspect: that activity makes me ill in a characteristic way and loss of function. I very very purposely avoided the words "fatigue" or "tired" or any related synonym. To me they are very clearly a separate concept and experience. I wanted the professional to listen and recognise the specific illness response / function loss of PEM.

Reading the clinic letter later, among other inaccuracies and omissions, there was just a one-liner "X suffers from tiredness" to summarise several years of severe illness that had put my entire life on hold. I can't explain how incredibly frustrating that was. I didn't suffer from "tiredness" and never have. But I think this is a pervasive problem where PEM is lost in translation. I don't bother describing it to other professionals anymore. They just do not have the slightest concept of it.

I have come across only a very small number of professionals online who really do seem to get it. That mostly seems to be because they have spent so long carefully listening to patients' experiences that they have started to recognise it.

That's why I think this discussion is so valuable and important. I am very glad the De Paul group have engaged on this thread and I really hope they are continuing to engage and reflect. It's so necessary to get this right.
 
StellariaGraminea said:
One medical appointment I described PEM, not using the phrase (they wouldn't have recognised it) but described the experience, in as simple a way as I could given time constraints & the sense the professional was disinterested anyway. I focused on the sickness aspect: that activity makes me ill in a characteristic way and loss of function. I very very purposely avoided the words "fatigue" or "tired" or any related synonym. To me they are very clearly a separate concept and experience. I wanted the professional to listen and recognise the specific illness response / function loss of PEM.
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I've had similar. A GP who was supposed to be the one who I could talk to about my ME/CFS, and had tried to several times, said to me when I phoned for advice on something else "How's the tiredness". I haven't mentioned my ME/CFS to her or any other doctor since then and avoid seeing any GP if I can. They just don't get it. I'm sick. I feel ill all day every day and have done for 36 years without a break. And in PEM I'm much sicker and more disabled by it. I'm not just aching or tired or weak or whatever, I'm sick.
 
Reflecting more about the difficulty being heard re PEM by health professionals....

It seems closely related to the idea of "Conceptual Blindness", i.e. a failure to observe something because your mental framework didn’t include it as a possibility.

In a sense we all can only hear what we know. The Dr I saw was only able to conceive of "tiredness" (or "fatigue") and didn't dream of the possibility of a new different category of experience that she hadn't been taught about.


This happened to me once in my own work. I did not see a particular issue until I had had some training a few years into the job. Suddenly I could spot the issue when it came up... in fact the first time was the day immediately after I got back from the course! I don't believe at all that was the actual first time I'd come across it... only the first time I'd recognised it.


Medicine needs to become aware it has a "Conceptual Blindness" problem here.
 
Thanks @Nightsong I’ve had a quick skim, not an in depth read yet. There’s some interesting analysis and breakdowns, but there are issues largely already covered in this thread.
Another limitation in our sample was that it did not include a healthy control group for comparison purposes or other illness contrast groups.
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I think this is my biggest concern and encompasses issues already raised. We have no evidence that this can distinguish ME/CFS PEM from symptoms other people with other illnesses have which are more commonly understood. A lot of people with a lot of conditions don’t feel great and feel fatigued after activity and recover after a short time. This is not PEM.
 
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