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Oct 6, 2023Liked by Keith C. Ellis, Ph.D.

This is a great explanation to give to people without long covid who say casually “I’m fatigued all the time” when trying to relate when we share our story.

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Exactly. As I was writing this piece I realized people really needed the context of understanding "normal fatigue" and that LC fatigue really is different at a fundamental physiological level. Please share it far and wide!

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Oct 6, 2023Liked by Keith C. Ellis, Ph.D.

Great article. As a Longhauler of close to 20 months I have, 2 call-outs 1) you can get PEM from emotional and mental energy expenditure not just physical; and 2, another symptom isn’t just the fatigue of PEM but PESE - post exertional symptom exacerbation. If I overdo it on a good day, it could trigger a full range of symptoms that seem like an acute covid case - fever, sore throat, neck pain, migraine and more.

So while I have daily long covid symptoms and LC fatigue, neuropathy, headaches, mild cognitive impairment/memory issues/inability to read on paper or do basic math now; stand for long periods of time or keep my heart rate in check, I do not run a fever daily or have a daily sore throat. This is PESE for me, and I can get it from an hour on the computer or a day with my children.

Thank you.

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Sam, thanks for the comments. I absolute get and believe that emotional and mental exertion can cause PEM and that's a great pint to always keep in mind. And I have heard of the phenomena of PESE, but not that specific terminology, so thank you for that.

It's horrible that LC causes so much impairment to just living a daily life. That's why I'm working on a product to help with LC microclots, which I'm hoping will relieve many symptoms for people. If you haven't joined the FB Group yet, please come join to hear more about that and get support from the community.

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Oct 6, 2023Liked by Keith C. Ellis, Ph.D.

Keith, this is so great! I’m going to link to this post in my next post this weekend. It is so critical to make the distinction between normal fatigue and LC fatigue. I had 44 years of experiencing the normal kind before getting LC, and it’s a whole different ballgame.

If any of your readers are interested, I underwent the two-day CPET which found exactly what you’ve said; my body is not sending enough oxygen to my brain, muscles, and organs. I haven’t been tested for microclots, but my fingernails have been purple and splotchy for over three years now. My FMD believes this is being caused by microclots.

Anyway, here’s the story that includes my CPET experience: https://www.healthrising.org/blog/2023/03/02/my-long-covid-disability-journey/

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Amy, thank you so much for your comments. I'm so sorry you're suffering from Long Covid. But it's great you're getting good testing and sharing your journey with people.

It's really great to hear that you got the CPET, so at least you know what's going on physiologically. And I tend to agree that it's likely from the microclots.

Would you be interested in joining my Facebook group and sharing your CPET results and experience there? I know the people in my group would love to hear about it. Here's the link to join:

https://urlgeni.us/facebook/rtlcr

And in the group, you'll hear more about the OTC product I'm developing to help with microclotting!

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