@Jeff_w needs to be the one to respond to the post as these are the surgeons he personally endorses. There is a wider universe of US surgeons who...
Informed consent is really important. I definitely had that from my surgeon, in addition to the research I did on my own. But no, I can’t...
Karen says she has ME. It is very possible to have both ME and hEDS. Many people in our community do. Several clinicians have written about this....
Thank you for the effort. I am so sorry you are doing so poorly. I will go look for your original post now. Is that the article I posted in...
Then it is equally possible that all of us are misdiagnosed and that neither our criteria, nor our experts, nor any of our research/lab findings...
This logic seems obvious to me yet so often gets lost. Yup. People have also started to re-contextualize facts in a way that a find super...
Why does it seem highly unlikely?
What I mean is any mechanism (which may not be the same thing as cause) which results in the symptoms described, for example, in the International...
I am not on them. No amount of effort could have taken me from 300 steps/day to 19,000. Trust me. I spent seven years trying :) Yes
As I wrote in the beginning, this would be a slow process of updating folks on my symptom progression and laying out the story. This is in part...
I have asked many people re: doing this test (and others) pre and post on patients planning to have surgery. I’ve done all that I can do. We’ll...
Hi @arewenearlythereyet I am pretty sure I replied directly to your post and explained why I am not concerned re: media. I am sorry if I did not....
Oh that would be great! I missed that. I will reach out. In theory it is. In reality, vast majority of patients are never referred for imaging.
I think this is totally reasonable. I also would not have had this surgery on the basis of my pre-thyroidectomy symptoms, even with positive...
Sorry about that! I don’t know. We would need research to figure that out. Maybe I am a unicorn (I don’t know a lot about how the other six cases...
Hi! Thanks for the friendliness :) Here is my long answer to that question: https://link.medium.com/ul5iukw35W The short answer is no. I met the...
Right, the CCI clinical picture my neurosurgeon is familiar with was different from mine. Perhaps this is because his patient population is almost...
No I am not. Many people on this thread have argued that cervical stenosis (which can cause the symptoms of severe ME, at least according to Peter...
Lastly--if we think that CCI has nothing to do with ME, then we should look with more rigor at the ICC criteria. There are so many symptoms in the...
I still don't understand the nature of the ignorance you say I am revealing. I did not understand what Michiel meant by distinct. You can say I...
Separate names with a comma.
