in case you aren't aware of how serious this disease is, here's a basic rundown and some information she's shared in the past related to the diagnosis. she's shared research articles talking about how MECFS patients are at higher risk for suicide.
not only does she share valuable and totally legitimate research, she has lived experience with the disease. she hasn't died from it (yet) but she regularly suffers from extreme #PEM. no, she's not fatigued because she's taking too many opiates and is obese and deconditioned, it's because of the #VerySevereMECFS. she claims to have been bedbound since 2014 because of the disease. the times that she gets out of bed to do things like attend appointments and eat at vegan restaurants don't count. she's also posted videos of herself standing up and walking down the SNF hallway, but for the purpose of this post just pretend those don't exist.
as we already know, most medical professionals have poor understanding of the disease and are prejudiced against those who are truly suffering. despite being dismissed and struggling with doctors believing her, tiffany kindly shares continuing education opportunities with her doctors/nurses and encourages her followers to do the same.
as part of her advocacy work, she strongly argues against a statement made by the CDC stating that CBT and gradual exercise are treatments for MECFS. she doesn't believe in these treatments not because she's lazy and doesn't want to do therapy, but because exercise and therapy have been proven to make MECFS worse and more disabling. unfortunately, she does not provide any sources or studies that prove this- you'll just have to take her word for it. she also frequently attends meetings with various MECFS organizations and lets her local government representatives know they can reach out to her if they need more info on the disease. i don't think anybody took her up on the offer, but it was still a nice gesture and i'm sure they would have enjoyed hearing what she has to say if given the opportunity.
