Constant PEM?

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https://pubmed.ncbi.nlm.nih.gov/34454716/

According to this article about the diagnosis of ME/CFS written by several of the world's leading experts on this disease, "the patient may be in a constant state of PEM, which makes it difficult to recognize the impact of overexertion".

But what does "a constant state of PEM" mean?
I am interested in this because, although I have many of the ME/CFS symptoms (e.g. orthostatic intolerance, unrefreshing sleep, body pain, ...), I think I do not have PEM. Specifically, my worst symptom is a crushing and unrelenting fatigue 24/7, which never goes away whatever I do. As a result of this disabling fatigue, I has been bed/couch-bound the last 2.5 years. Nevertheless, overexertion does not have a significant impact on my fatigue, which leads me to consider that I do not have PEM. But after reading this article, I wonder if I could be in a constat state of PEM.

What do you think? Is there anyone with a constant PEM?
 
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Wishful

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The brainfog and fatigue-like symptom (since it's not real fatigue) seems to be separate from PEM. When I had PEM, it would make those symptoms worse, but they'd still be there without PEM. I seem to have managed to cure myself of PEM, but I still have those baseline symptoms.

I think that expert doesn't really know what he's talking about. There's no clinical test for PEM, so whether a patient is suffering from PEM or not is just a wild guess from everyone, including the patient. :meh:
 
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It felt "constant" during my three month vacation to some exotic place, where I spent almost every day doing nothing, yet kept getting worse each day. And not going on the field trip, or out to lunch.

I had to move around more to reach food and water and a cup of coffee. I had to talk more because I was with my daughters family. That, alone- probably accounts for continuous PEM.

so my lymphatics improved from the extra movement and lists of new symptoms worsened and took over including intense POTS and tachycardia
 

hapl808

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I think that expert doesn't really know what he's talking about. There's no clinical test for PEM, so whether a patient is suffering from PEM or not is just a wild guess from everyone, including the patient. :meh:
I think this is the sad truth. Since PEM is a symptom description rather than an understood biological process, it just depends on whose description we use. I just worked on the computer trying to mess around with a video thing for 20 minutes. That gives me immediate brain fog - blurry vision, cognitive confusion, nausea, etc. A social interaction doesn't do that to me - but gives me a PEM crash. Does the computer work also give me a PEM crash? It's so hard to tell when I feel like crap every day, my HRV fluctuates wildly and sometimes without reason, etc. We're all just wildly guessing.
 
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Since PEM is a symptom description rather than an understood biological process,
have they gotten anywhere with the metabolics on PEM?

measuring all the metabolics produced, seems like should lead to a better grasp of what is going on chemically in the body.

My chatting generates throat issues. Do you have the throat issue?

I might not have a big PEM event from a chat, but I'll get immediate declines after 10 minutes.

Holding the cell phone also somehow make some feel more ill in moments. also I am affected by the electronics.
 

hapl808

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My chatting generates throat issues. Do you have the throat issue?
Not as much throat, but a long chat will trigger the beginning of really bad acid reflux. By the next morning I am coughing and hacking with burning LES-type reflux (dealing with it right now from a chat yesterday).

Can't figure out how to stop it.

Have tried: Pepcid, d-limonene, various probiotics, carnosine, various magnesium, marshmallow, slippery elm, baking soda, calcium carbonate, Pepto Bismol, melatonin, ginger, fenugreek, triphala, and on and on. Drives me crazy and probably doing awful things to my esophagus.

Then usually later that day or the next day the actual PEM crash starts - even more fatigue, that poisoned feeling, blurry vision, worse headaches, etc.

have they gotten anywhere with the metabolics on PEM?
All still sounds like very early 'this sounds promising - more study needed' type research to me.
 
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Have tried: Pepcid, d-limonene, various probiotics, carnosine, various magnesium, marshmallow, slippery elm, baking soda, calcium carbonate, Pepto Bismol, melatonin, ginger, fenugreek, triphala, and on and on. Drives me crazy and probably doing awful things to my esophagu
my husband has all that crap much of the time, and some sinus challenge...the sinus go off, affecting his stomach and then all that happens.

And others around here: sound awful.

I unraveled on Monday, digestion went off, IBS type. I blamed a slice of bread. later, that seemed silly. PEM for three days.
 

Wishful

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measuring all the metabolics produced, seems like should lead to a better grasp of what is going on chemically in the body.
Unless it's not chemical changes in the body (serum, muscle tissue, etc). It could just be subtle changes in isolated portions of the brain. That could be difficult to find even with fancy MRI scans.