So well said, amazing advocate . I am glad advocates have formed a new coalition to get NIH or a new office to study how all these infections are related.
❤ I remember when you first got terribly sick when Jeanne Binstock , your mother and I were friends. My Jen was the 5th reported Lyme case in Mass. So many physicians in denial. I remember the Senate Lyme hearings, the vehement deniers.
I've had ME for over 30 years. I got Mono at age 16. Thanks for spreading the word about ME and Long Covid. I was jaundice when I had Covid. So, I know what you mean about the GI problems.
Theres a genetic condition called Gilbert’s causes high BUN levels and yellowing of the skin. I see a lot of people in the Gilbert’s groups with ME. It affects 10% of the population so not one and the same, but I wanted to mention it exists just incase it’s helpful at all.
Just a word about advocates working together. Not quite. Not a single one of them has looked into the incident that Holmes 1988 CFS was coined to solve.
Thank you Rivka! You rock! You are an amazing advocate for all of us. 🎉❤
Thanks for sharing your experience and for so clearly stating the problems and what we all need in the post acute infection community ♥️
So well said, amazing advocate . I am glad advocates have formed a new coalition to get NIH or a new office to study how all these infections are related.
❤ I remember when you first got terribly sick when Jeanne Binstock , your mother and I were friends. My Jen was the 5th reported Lyme case in Mass. So many physicians in denial. I remember the Senate Lyme hearings, the vehement deniers.
Thank you for fighting for us
Perfectly put Rivka, thank you! I have 33 years ME & co. I also live on or near my bed. Good to hear your words.
Well said Rivka, thank you
I've had ME for over 30 years. I got Mono at age 16. Thanks for spreading the word about ME and Long Covid. I was jaundice when I had Covid. So, I know what you mean about the GI problems.
Theres a genetic condition called Gilbert’s causes high BUN levels and yellowing of the skin. I see a lot of people in the Gilbert’s groups with ME. It affects 10% of the population so not one and the same, but I wanted to mention it exists just incase it’s helpful at all.
Thank you for bringing that to my attention. I wasn't aware of that illness. ME sure does invite comorbidities. Ugh.
YES...TOGETHER!!!
I've had me/cfs since 1981. And ..,yes ALL
@@roonbooks3227 Blessings on you, fellow traveler on this road!
As clear and incisive in thought and words as ever, Rivka.
Well said, Rivka! 👏🏼💜
Thank you, Liz, for your support and for your advocacy for our community. xxoo Rivka
My stomach burned with long covid and mayo diagnosed with bile acid malabsorbtion
Just a word about advocates working together.
Not quite.
Not a single one of them has looked into the incident that Holmes 1988 CFS was coined to solve.