Hoosierfans
Senior Member
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Watched the entire NIH ME / CFS & Long COVID symposium the past two days and there was a lot of great information and avenues of research being pursued.
But one thing stuck with me…at the end of Day 2, either Nancy Klimas or Maureen Hanson (or maybe it was both…sorry…brain fog) said that it’s “time to drop the ‘chronic fatigue syndrome’ from ‘ME / CFS’” because (a) as the symposium showed, there is ample evidence this is a neuro inflammatory and energy production disease thus “myalgic encephalomyelitis” alone is more appropriate; and (b) the term “chronic fatigue syndrome” woefully misdescribes the disease in a way that is harmful to patients and the level of suffering and disability they experience. 👏🏼👏🏼👏🏼👏🏼👏🏼. They encouraged all researchers, scientists and clinicians there to drop “CFS” from publications, etc.
I’d love to hear others thoughts on this proposition. It got me so fired up, I’m ready to draft a change.org petition! 😃
But one thing stuck with me…at the end of Day 2, either Nancy Klimas or Maureen Hanson (or maybe it was both…sorry…brain fog) said that it’s “time to drop the ‘chronic fatigue syndrome’ from ‘ME / CFS’” because (a) as the symposium showed, there is ample evidence this is a neuro inflammatory and energy production disease thus “myalgic encephalomyelitis” alone is more appropriate; and (b) the term “chronic fatigue syndrome” woefully misdescribes the disease in a way that is harmful to patients and the level of suffering and disability they experience. 👏🏼👏🏼👏🏼👏🏼👏🏼. They encouraged all researchers, scientists and clinicians there to drop “CFS” from publications, etc.
I’d love to hear others thoughts on this proposition. It got me so fired up, I’m ready to draft a change.org petition! 😃
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