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Do other long haulers suffer with brain changes? Seen any improvement?
Post-COVID Recovery & COVID-19 | Last Active: May 15, 2023 | Replies (173)Comment receiving replies
So glad to hear from someone who feels the same way. We have to put our heads together and come up with some way for more medical recognition.
The ME/CFS PR is terrible. I write to the group and tell them that each year. I live in the third largest city in Georgia and there's not one word on TV or Social Media. I simply can't understand what's been going on for the past 40 years. I did have three wonderful physicians who paid attention to what I told them . They retired about 4 years ago. Primary care people keep doing blood tests. Experts keep doing blood tests. There has to be something more medically creative. I don't know what it is. Perhaps we can convince some program like Frontline on PBS to take a close look at what's going on.
Truly, no one seems to care deeply enough. Who knows what proper research would uncover. Each researcher seems to be taking their own trip. Nothing is unified. I'm open to all suggestion so keep in touch.
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Our brains are working exactly the same. I’m tired of the bloodwork that reveals nothing. I’m tired of being passed on from one doctor to the next. I live in a small city in New York, but even after going to the Cleveland Clinic I have no answers and no direction. My husband is a heart attack survivor and my sister is a cancer survivor and they can both run circles around me. There was treatment and they got better. No treatment for me, and no one cares. What has been going on for 40 years? I think it’s time to speak out - loudly. But to whom? We need someone with a connection. That seems like the only way to get things done. The author of Seabiscuit and Unbroken has ME/CFS. We need her because she’s famous.