Hello everyone,
After a big crash who keep me bedridden during 6 weeks, I recovered to my severe baseline state.
For your information, i will fly to Morocco with my wife May 13.
After many discussions in France, it's impossible to have this treatment off label (even if you propose to pay the treatment). ME/CFS is considered psychological and the French Healt system don't want to treat ME/CFS people with Photopheresis given there is no proof this treatment benefits
Given the finding of Mark Davis on T cells, my lab results which show CD8 lymphocytosis, the negative rituximab phase 3 and the very good preliminary data on cyclo study, I worked hard to find a way to access to this treatment.
I have the chance to have a very good internal medicine doctor who write me a letter to try to find an Hospital outside France who is ok to perform this procedure.
I have contacted many center in France, Belgium, Germany and others country with response like "Did you have seen a psychiatrist for evaluation ?".
Finally a colleague of my wife have a sister who is heamatologist in Morocco and after discussing my case with the specialist, they accepted.
I will receive 10 photopheresis sessions (once a week during 10 weeks).
The cost is low compared to US, 1350€/session (but high for a French).
My family will help me to pay the treatment.
The good news is if he the treatment works, my doctor tell me that I will "force the system" in France to pursue.
I am little scared to the flight given it's will be the first time and i am very sensitive to sounds and Lights.
I have continuous headache and tinnitus everyday.
Any advice ?
I will update this thread during the treatment,
David
After a big crash who keep me bedridden during 6 weeks, I recovered to my severe baseline state.
For your information, i will fly to Morocco with my wife May 13.
After many discussions in France, it's impossible to have this treatment off label (even if you propose to pay the treatment). ME/CFS is considered psychological and the French Healt system don't want to treat ME/CFS people with Photopheresis given there is no proof this treatment benefits
Given the finding of Mark Davis on T cells, my lab results which show CD8 lymphocytosis, the negative rituximab phase 3 and the very good preliminary data on cyclo study, I worked hard to find a way to access to this treatment.
I have the chance to have a very good internal medicine doctor who write me a letter to try to find an Hospital outside France who is ok to perform this procedure.
I have contacted many center in France, Belgium, Germany and others country with response like "Did you have seen a psychiatrist for evaluation ?".
Finally a colleague of my wife have a sister who is heamatologist in Morocco and after discussing my case with the specialist, they accepted.
I will receive 10 photopheresis sessions (once a week during 10 weeks).
The cost is low compared to US, 1350€/session (but high for a French).
My family will help me to pay the treatment.
The good news is if he the treatment works, my doctor tell me that I will "force the system" in France to pursue.
I am little scared to the flight given it's will be the first time and i am very sensitive to sounds and Lights.
I have continuous headache and tinnitus everyday.
Any advice ?
I will update this thread during the treatment,
David