Open DSQ PEM survey - DePaul University, open October 2025

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.
 
It’s frustrating to see people understand some of the grave limitations of the tools, while still insisting they are useful.

Why not just try to teach clinicians and researchers that people with ME/CFS often experience worsening of symptoms and reduced level of functioning in the time after exertion or stimuli, it can be delayed by up to multiple days and can last for days, weeks or longer, and is not always followed by things going back to what was normal for you?
 
StellariaGraminea said:
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.
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Yes, this reminds me of a passing comment when discussing either food or weight or ME a GP (not spoken with before or since) made “yes, I suppose you must eat baked potatoes a lot”.

It made me go “?”

I guess when he’s tired or wants an easy dinner he just makes a baked potato. For a healthy person it’s a reasonable compromise.

I most certainly do not eat baked potatoes as they are really hard work, due to a litany of reasons:-
1. It is a massive PITA to get decent fresh potatoes from online shopping. You have to schedule potato-eating, I don’t buy potatoes.
2. Buying a 1kg+ bag gives you more chance of decent spuds but it’s heavy to get in, and you won’t eat all of them so it’s heavy to have to carry them out to the bin.
3. The small packs of baking potatoes seem to be potatoes which aren’t very nice baked.
4. The frozen ones have a weird texture and seem airy and unsatisfying.
5. Baking a potato is a dangerous sport - start in microwave then transfer to air fryer/oven - hot potato, potential to drop.Oven - I always burn myself. Air fryer - always drop it. Oven only?takes ages.
6. You then have to put something on it. Which involves making something else.

Or, I could boil the kettle to make instant mash which is what I do, thank you Idahoan.
 
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