My first reaction to this was tears....that no news is necessarily good news but at least it is new research done by and reviewed by accredited science and research people, I am a long time patient/person who, diagnosed in 1995 .....after two+ years of multiple doctors. Remember the book Osler's Web? So much of ME/CFS history there, but then researchers, as De Freitas et al, were treated with suspicion and their lab findings so costly to secure let alone prove. Then, my ideas fly to the initial Truckee outbreak which Drs' Peterson and Cheney saw in their practice. Many were either teachers or healthcare, or around many people in their jobs. In my years as a nurse, prior to disability, I was around patients fluids from chemo, chronic liver and organ failures, before DRGs (diagnostic related groups) as a method for reinbursement by mainly hospitals, patients were kept in hospitals for weeks at a time. Saliva is a body secretion, as mucous via suctioning lung cancer, etc, urine, feces...hepatitis from blood or these sources. My onset was gradual relapsing- remitting til crash. As a Cheney patient from DX til his heart surgery, went through the myriad of tests to know that I have mod/severe case...my RNase result was '7' which he said was probably since for years it was grinding my messenger RNA so that many longterm/chronic patients might not be in abnormal values now. No longer a clinic patient and probably would not concur with his recent approach as it is too experimental to be widely embraced....and costly. Whatever antivirals, if implemented, hopefully would be covered by, or elligible for assistance such as HIV drugs....a long road. CFS is a poor enough label for what we deal with but 'retroviral' group, though not as complex as HIV/AIDS, is not a label I would want to publicly embrace or be challenged by. But, it certainly gets CDC's attention!
Whittmore-Peterson is a very good place IMHO, as stated, her daughter has been ill many years and Dr. Peterson has been involved since the initial outbreak was documented. They are personally committed to research. Although, I may not be in an antiviral test group category, at least it gives valid hope of better research for newer cases. Neuroendocrineimmune involvement is a large component to approach. Will try to shorten my reply in future, but this feels important. (gradual onset, now mod-severe) Sorry for my run on sentences, noted. Sue C.
Whittmore-Peterson is a very good place IMHO, as stated, her daughter has been ill many years and Dr. Peterson has been involved since the initial outbreak was documented. They are personally committed to research. Although, I may not be in an antiviral test group category, at least it gives valid hope of better research for newer cases. Neuroendocrineimmune involvement is a large component to approach. Will try to shorten my reply in future, but this feels important. (gradual onset, now mod-severe) Sorry for my run on sentences, noted. Sue C.