But 90% of American doctors to this day (2018) still label me with a "CFS" diagnosis. And it is not just me. There is clearly a misdiagnosed group, some severely ill like I was, who are labeled with CFS and basically told to fuck off and die by the traditional medical establishment in the US (so I can only imagine what is happening in other countries).
We have an illness yet to be formally named and it usually involves having multiple autoantibodies. The volume of PM's that I was receiving from people similar to me was insane and every last one had been given a "CFS" diagnosis by at least one doctor (and usually multiple doctors).
I have spoken to them and don't know why you would assume otherwise? I spoke to hundreds of Rituximab patients as part of my research. Some from OMI, some from Center for Complex Diseases, some from Kolibri, and many with private doctors across not just the US but worldwide. Many from PR, some from Facebook, some from other medical groups. Almost every single one had been given a "CFS" diagnosis as I was.
I continued to dig deeper since 2013 and with each layer, it brought me to my current treatment. I do not deny or sugar coat that there can be major risks like anaphylaxis or very rarely PML. It also should not be done if you are at risk of reactivating hepatitis or TB (which I was not b/c never had either).
But if I were to name the top 100 things that have injured or harmed me in my pursuit to get better, Ritux would not even make the list (for me).
I'm very interested in your analysis, it's impressive you talked to so many patients. Can you send me a PM with a summary of what you learned(from talking to them), and which antibodies you tested positive for? I myself have doubts about ME/CFS, im diagnosed with POTS but 1) being unable to access a 2 day cardiopulmonary testing 2) no joint pain whatsoever and 3) my PEM symptoms being mostly cognitive i can't tell if my PEM is "actual" PEM or just increased autoimmunity/inflammation in the brain.
Thanks a lot and i'm glad you are better!