From his small perch in MN, the Patient Advocate looks out over the ME/CFS landscape. The PA has arrived once again in this frozen city to help his daughter. The Patient Advocate’s daughter has started a new blog here.
The internet is a funny place. Yesterday a message was left on the PA’s blog under an old post on Dr. Kenny de Meirleir. (The reader will remember that Dr. de Meirleir has said that XMRV “is not everything” in this ME/CFS illness.) The poster of yesterday’s message was a certain E.F. Ramos, M.D. The name is not known to the Patient Advocate, nor was the PA able to find out much about him from an internet search. So E. F. Ramos remains an enigma. Here is the message:
“With the help of De Meirleir and his team I’ve gone beyond them. Although he and his groups unveiled ONE fundamental pathophysiological mechanism in ME/CFS, he did not reach the ULTIMATE CAUSE of the disease. And it seems I did. So far I have tested as REAGENT 127 patients with his NEUROTOXIC METABOLITE test, and 82% became NEGATIVE after the therapy I’ve developed. Also most got real clinical improvement, or full remission. I’ll soon publish my data.”
On another blog, an October 19, 2010 message, also by a certain E. F. Ramos M.D., states:
“Hello folks, I have been studying ME/CFS for 11 years and I’m finishing a clinical research with already 148 patients, all tested with a miniaturized version of de Meirleir test. This test doesn’t detect the CAUSE, but rather a POWERFUL PATHOPHYSIOLOGICAL MECHANISM involved in ME/CFS. However, I’ve developed a unique treatment that leads to a NEGATIVE test in previously REAGENT patients, with impressive clinical improvements in most of them. Very important I have tested and treated 16 DOCTORS and NURSES with the disease but their skepticism faded with successful targeted treatment.
I’m not hunting patients, I do not intend to continue diagnosing and treating ME/CFS patients; and I am not involved with business related to ME/CFS. In fact de Meirleir just sent me the tests for evaluation; and he doesn’t even know my results. I just intend to discover how to cure the disease. Meanwhile I can only affirm the test is a good diagnostic tool, especially useful for those not acquainted with ME/CFS clinical coherence, something that takes time to achieve. Soon I will publish my results.”
Perhaps a reader can shed some light on this?