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I agree. I think we are saying the same thing so let me add more meat to your rebuttal. Maybe the posters here are conflating PEM with a PEM induced crash? If we don’t agree upon the same definition of PEM, then it’s pointless to debate. IMO, we can’t avoid PEM by behavior modifications alone...

Gaia Licorice Root (alcohol free) This is my suggestion. Follow the instructions on the bottle. If it works, then great.

Who needs Biology? Maybe you missed my A-B-C video? To avoid PEM, you just gotta go with the flow, and move your feet to the beat. :rofl::laugh: :emoji_cartwheel: (If offended, please excuse my snark)

Looking forward to your comments after the read :)

In between the “before” and “after” images, I’d maybe consider a few “during” ones too; well, at least for the comical impact. We don’t want our viewers to get bored. Hmmm...and the Winner of the “Best Sloth” category .. goes to... @arewenearlythereyet !!!

Futhermore, if you don’t follow the published PEM guidelines, then you the sick patient are at fault for still being sick. Cuz, didn’t you know, following the PEM guidelines is..... A-B-C, It’s Easy as 1-2-3!!

Thanks for asking. I would not want the finely dressed woman, whom I observed that day, to represent THE “poster child” of ME. We need to find a way to show the full spectrum of PwME, and if we have daily fluctuations (look great in public for one hour) then the public facing image vs the...

From my understanding, JMEA President and ME patient Mieko Shinohara, appears in Unrest.

I am sympathetic to the authors candid display of anger, frustration, abondonment, and isolation. But her conscious choice to repeatedly channel these energies toward Jen, leads me to infer that the author is not taking any self responsibility. Her attempts to blame/shame Jen may serve the...

“I’m A Believer”

If I may edit your post: If the institution is not bad, why is it ELECTING predators? :mad:

Thanks for posting. It’s great to see new ideas emerging, and new paths forming. I especially enjoyed this quote: “This is a shot across the bow of the bad guys,” said Dr. Marc Harrison, the chief executive of Intermountain Healthcare, the nonprofit Salt Lake City hospital group that is...

Wow, @Webdog, you are challenging KP!!! Way to go!!! Please keep us in the loop and let us know how we can help!

If I may add a bit more about perceptions and misperceptions. I feel if the Stanford ME PEM document get published “as is” on the Stanford ME Clinic webpage, it will create a misperception as to what ME really looks like. I feel it will only serve to downplay our goals, which are an urgent need...

After rereading my post, I could have used the word “misperception” instead of “perception”. From my view (whether accurate or not), in the Stanford ME Clinic, I observed people who didn’t look sick. I have also sat in the waiting rooms of 2 other “lesser known” ME doctors, where I observed...

Futhermore, to add my thoughts about the Stanford ME Clinic, and perceptions about ME; on one of my visits I saw a well groomed woman wearing business attire (pressed suit, perfect hair and make up). She drove herself, obviously. She said she was a participant in one of the Stanford ME studies...

All great points, as usual, @Invisible Woman We need to be a part of the patient input process to overhaul this doc. It’s giving an impression of ME that does not apply across the board to all PwME.

There is more work to be done in educating others. Many think these examples ARE realistic. This what I have been trying to say, but have done a poor job, obviously.

Yes, I agree. In the US, this is what the public sees and acknowledge as ME, (what you refer to as newly ill) and apparently what the Stanford ME Clinic sees and acknowledges as ME.