chronic fatigue syndrome

chronic fatigue syndrome

Tom Hennessy on MacNeil Lehrer, Living Hell, Larry King - 1992

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May 12 - International Awareness Day for C.I.N.D.'s (Complex Immunological & Neurological Diseases) and the organization behind it, R.E.S.C.I.N.D., Inc. which stands for (Repeal Existing Stereotypes about Chronic Immunological and Neurological Diseases) was started in 1992 by ME/CFS patient and advocate extraordinaire Thomas (Tom) Hennessy, Jr., who was a fearless advocate and fighter for over a quarter of a century of his life. Sadly, he passed away on Sept. 9, 2013, after suffering from several of these intertwined diseases. May12.org continues Tom's work advocating for PATIENT rights. Video contains interview with Thomas Hennessy Jr. speaking with Fred De Sam Lazaro describing his struggle with CFIDS and short interview on Larry King show. Living Hell, the 1993 documentary of the real world of Chronic Fatigue Syndrome containing interviews with Dr. Cheney, Dr. Bell, Dr. Kamaroff, Dr. Levy, Dr. Klimas, Dr. Gun, Dr. Peterson and government officials, 56 min. 1993 Among others, Dr. Kamaroff is speaking on possible causes and pathology: "immune system running uncontrollable amok, responding what seems to be virus." Enteroviruses, Herpes, retroviruses have been suspected. Immune system abnormalities are present and "re-awaking of viruses which are asleep in most peoples bodies, involves changes in the immune system and changes in certain brain hormones" In other words, ME CFS patients suffer from what looks like chronic infection causing an immune suppression/exhaustion unable to control reactivation and clearance of opportunistic infections. Similar, the infection with HIV causes an immune suppression which leads to an acquired immune deficiency AIDS, where opportunistic infections take over and cause considerable co-morbidity. very similar to Lyme disease , which is caused by a spirochete, causing life long complications and co-infections leading to chronic disease. CFIDS may be the most wide spread, fast moving chronic diseases to have emerged in the world of this century. It affects all ages, including children. The documentary describes an "out-break" in Incline Village, Nevada in 1984, where almost 300 people came down with flu and a large patient cohort never recovered. A similar out-breaks occurred in Lyndonville, mostly children where affected. Dr. Chenney notified New York state department, they came for 20min. and left with no word. Those out breaks were never investigated and today patients have no explanation of to what causes their lifelong, severely debilitating disease. It is poignant to see that each of the doctors speaking in this movie believed in 1992 that bio-medical diagnosis and a treatment will be available in several years. THE FACT IS, it has been nearly THREE DECADES since the diagnosis CFS was "invented" by the CDC, we're still stuck with the damning name CFS, we don't know what causes it and we don't have any validated treatment. Worse, ME/CFIDS/CFS is still misleadingly classified and treated as a psychosomatic syndrome in most countries, diagnosis is still based on exclusion despite the fact that biological abnormalities and immune abnormalities have been proven, invalidity payments have gone harder to obtain and in some countries they are categorically denied. The CDC still disseminates misleading medical information which leads to mistreatment of patients worldwide.