• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

EMAIL THE HEAD OF THE CDC: Dr. Thomas R. Frieden - EMAIL ADDRESS IN POST

muffin

Senior Member
Messages
940
Thanks for emailing him.

KEEP EMAILING WITH GOOD INFO! We need to make sure that Frieden is most aware of the major issue with CDC's CFS program and the possible (probable) massive boulder that will fall on the CDC when the XMRV replication study hits - regardless of its outcome.

The CDC ignored two other Retroviruses when they finally dealt with HIV/AIDS. But they play games with other stupid viruses that don't even compete with the seasonal viruses. Enough of the games and marketing ploys. Time for the CDC to deal with a real epidemic. So scream and keep screaming.
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
COPIED FROM JUSTIN'S POST ELSEWHERE. I THINK THIS IS ACTUALLY BRILLIANT! LET'S DO IT. THANKS JUSTIN!!!!

"Let me know what you think? We compose a letter to the CDC asking them what they are doing in regards to the recently discovered retrovirus , the millions of people who may be suffering worldwide from it's involvement, and the potentially dangerous situation it may cause to our blood supply! etc. etc. Then once a day, everyday indefinately we each e-mail this and also forward cy to a major news network, possibly the same one?"

I did not post this idea, but I did voice my support. I think it's a great idea.
 

glenp

"and this too shall pass"
Messages
776
Location
Vancouver Canada suburbs
TY Muffin

It sure helpos to have the click on addy or I write the letter and somehow don't get the addy.

I am in Canada but sent it anyway and sent from the "male" name!!!!! I will post here if I hear back and find this thread again!

glen
 

muffin

Senior Member
Messages
940
Glenp: Men do need to complain as they too are as badly affected as women are. Men are also horribly neglected and demeaned possibly even more than women are with this disease. I also think the real numbers of men with CFIDS is woefully low. Horribly under-reported and under-treated. Look at my poor husband. Diagnosed with "burn out" - not the CFIDS that the whole range of his symptoms strongly suggested. But burn out. Give me a break.....
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
Glenp: Men do need to complain as they too are as badly affected as women are. Men are also horribly neglected and demeaned possibly even more than women are with this disease. I also think the real numbers of men with CFIDS is woefully low. Horribly under-reported and under-treated. Look at my poor husband. Diagnosed with "burn out" - not the CFIDS that the whole range of his symptoms strongly suggested. But burn out. Give me a break.....

Imo there are other points that are more important to make than that men are affected. I think that the fact that this disease strikes women disproportionately has contributed substantially to our maltreatment because of sexist attitudes of the usual suspects. On the other hand now I think we can use the 'oppressed women' card to get more funding as CAA is doing in the Women's Pain campaign, which I support. Look at the disproportionately, imo, high funding and awareness breast cancer gets because it is a women's disease.

Just my opinions; I do of course support accurate information being disseminated so more power to you if you feel this should be publicised. And thanks for your advocacy efforts in general!