9 Comments
Sep 12Liked by K. Johnstone

I have seen in the literature that it is estimated that 50% of long COVID patients have ME/CFS. I am one of them. I always tell people that I have both, because a friend of mine has long COVID but does not have ME/CFS and we are living different lives. It feels very distinct to me. Thank you for underscoring that.

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Sep 10Liked by K. Johnstone

I don't understand how these kinds of mistakes are being made. When I first read about PEM, I was able to easily grasp it and understand how it worked almost immediately. I don't understand why this is so hard for researchers!

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It's exactly as you say.

No medically educated person could be so obtuse.

That leaves only deliberate medical malice.

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Good assessment

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How did “CFS” EVER come to be linked with ME?

Simple. Three ME-literate physicians Byron Hyde, Gordon Parish, Alexis Shelokov assessed the Lake Tahoe outbreak under investigation by CDC epidemiologist Dr Gary Holmes. Pronounced the Tahoe outbreak ALONE “possesses all the primary determinants of Ramsay ME”

Tahoe ALONE since no other clusters were investigated and they could not be sure.

The CDC actually agreed this was the case, and called Lake Tahoe “similar to the Royal Free disease, ME”

In essence, as a prototype for Holmes 1988 CFS I had been diagnosed with ME prior to serving as a matrix for the new CFS syndrome.

In science!

However, in science “similar does not mean same”

We had evidence such as the newly discovered HBLV that was not known in ME.

Dr Carlos Lopez of the CDC explained the new CFS syndrome was to COMPARE Lake Tahoe Mystery Illness to ME in order to determine if it was the same or not.

This was never done.

ME was never “renamed” CFS.

Unless and UNTIL due process of comparison is carried out, any assertions that ME was renamed CFS are illegitimate steps of bypassing medical and scientific procedures.

Which disqualifies all such assertions.

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🙇🏼‍♀️🤦🏼‍♀️🙇🏼‍♀️

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I've tried restacking this and it says there's an error!

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author

Oh, well thanks for trying to restack!

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I managed to restack someone else's restack of it 👍

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