leokitten. I am curious. How long has it been since you started to believe you had this, and how long did it take to read the thousands of pages of material on the subject?
I started to realize that CFIDS might likely be what I have this summer after basically ruling everything else out seeing every doctor and doing every test imaginable after getting suddenly ill in January. So it's been months and let me tell one can do a lot in a few months when you are determined and especially if science is your background. I have spent all of my time reading basically everything I can find since the summer and when I finally found my CFIDS doctor and research working with her.
I am a scientist and researcher at the National Cancer Institute/NIH and am very used to having to go through hundreds and hundreds of pages of material and concepts to put pieces together. If there is one disease that is definitely one of the most complex in the human body it is cancer.
My family and friends thought I was crazy with how much work I have been putting into this but as I told them this disease is horrible I don't want to get worse, the longer I am ill without treatment the lower my chances are, and no one is going to help me out of it except me so I better not waste any time while I still have some energy and will.
Literally most everything else in my life has been put on hold because I know how important it is to fight this now.
If you are newly diagnosed and making progress, great! Do not ever forget, however, that this can turn sideways and go somewhere else you never imagined. There is an informal recognition among the ME/CFS online patient group that until you are symptom-free five years, be careful saying what works, because many come on here expounding the virtues of a given treatment - and a month or so later, find themselves in a deep and total crash yet again.
Did I ever write anything about what treatment works or what doesn't? No, I simply said get as much data/information as possible and used a multi-faceted treatment approach. Who would disagree with that?
I think most on here benefit greatly hearing each others' experiences. Who can really say what advice is "wrong" anyway?
When I say "wrong" i mean clearly wrong: that there is a known particular fact about something and they don't understand it and write like they do saying something that's not right.
I'm not talking about things like "hey I don't think Anti-Yeast works for Candida" or "this methylation protocol is better than this one" where it is clearly not possible to prove someone is wrong. I'm talking about things like basic drug facts or biochemistry facts or disease facts that I know they are not getting right and misrepresenting and then deciding to do something using this misinformation or give advice based on that. This is not good.