This me This means a lot. Thank you ❤️
As I have written elsewhere, all my symptoms resolved at the same time. I will write about all this clearly and in great detail in subsequent...
Just to clarify, you are saying the Ramsay definition (which both Jeff and I also met) doesn’t have this problem? Re: breathing my surgeon...
All I can say is that these diagnoses were accurate for me. I don’t know how generalizable my case is or isn’t. Fortunately, we have the...
Hi @Michiel Tack. Thanks for posting this. I guess I’d just say that we’re not textbooks. Think of how inaccurate or incomplete so many of our...
Hi! I appreciate your concern and it breaks my heart a bit. I don’t think my recovering means that suddenly all this falls apart. Not only am I...
Yes, that is exactly what happened to me, Perrier.
And thank you @Sasha for expressing that empathy. This has been a very hard thing to do but I have been just so moved by how sympathetic and...
Just wanted to chime in to say one thing, maybe two! I’m not evading questions. There’s this thread, the PR thread, 400 emails in my inbox I...
Because of the norms of the forum. There has been a lot of discussion re: problems of sharing personal stories, lack of research, etc. I joined...
I gotta duck out but with answer this and many other questions in future Medium posts. Thanks, everyone!
You were saying that CCI can't explain the gender skew in ME. All I am saying is that the vast majority of my surgeon's patients are women. At...
I also realize this discussion is perhaps premature for this forum and format. I will continue sharing my experiences online and as folks continue...
Actually, I think the cause of my improvement is abundantly clear. I'll make sure to share more information in future Medium posts to explain why...
Not sure where I said that...
Just to temper expectations, both my internist and neurosurgeon are insanely busy. I fear for them publishing because of this, but I believe they...
I think this has been somewhat misrepresented/misunderstood. A wider number of surgeons operate on CCI. However 1) fewer surgeons have made it...
Per Fink still thinks this
I'm pretty sure that at least most hEDS CCI patients are women. Also, most people with hEDS are women.
Hi Trish! There are a bunch of missing steps (I obviously didn't include everything in the email from #MEAction as that was not the intent). I'm...
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