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Saturday, September 07, 2019

What if Mike Mariani had referred to Chronic Fatigue Syndrome as "Non-HIV AIDS" in The New Yorker?





https://www.newyorker.com/culture/personal-history/a-town-for-people-with-chronic-fatigue

Read this passage from Mike Marani's must-read  Chronic Fatigue Syndrome article in The New Yorker and then below it read what it would have sounded like if he had referred to CFS as "Non-HIV AIDS" the way that Judy Mikovits does. Wouldn't that have awakened the nation to the seriousness of CFS?



After a year of these symptoms, I visited an internist in Manhattan, who gave me a diagnosis: I had chronic-fatigue syndrome. According to the National Academies of Sciences, C.F.S. (sometimes referred to as myalgic encephalomyelitis) affects between eight hundred thousand and two and a half million Americans and is characterized by extreme exhaustion. Patients with severe cases are bedridden for years and rarely move or speak. Doctors are still not sure what causes it. For decades, many thought that it was psychosomatic. (My symptoms were so odd that, over the preceding year, I, too, had wondered if I was going crazy.) This sense lingers in popular culture. In the pilot episode of “House,” from 2004, a patient comes to the clinic complaining of C.F.S., and Dr. House successfully treats him with mints from the vending machine. In a standup set in 2007, Ricky Gervais joked about people who say they have C.F.S. because they “don’t feel like going to work.” Today, though, most doctors who study C.F.S. think that its symptoms are caused by a dysfunction of the immune system, which is typically triggered by an infection, such as the Epstein-Barr virus (which causes mono) or viral encephalitis. Still, they don’t understand why, even as most people bounce back from these ailments, a small percentage of them never recover. Because there’s no clear biological cause, doctors recognize the disease by gauging symptoms subjectively, which makes diagnosis, in the eyes of skeptics, unreliable, and has kept away funding for research. There are currently no F.D.A.-approved medications to treat C.F.S.


The Mariani passage with CFS replaced by "Non-HIV AIDS."

After a year of these symptoms, I visited an internist in Manhattan, who gave me a diagnosis: I had Non-HIV AIDS. According to the National Academies of Sciences, Non-HIV AIDS (sometimes referred to as myalgic encephalomyelitis) affects between eight hundred thousand and two and a half million Americans and is characterized by extreme exhaustion. Patients with severe cases are bedridden for years and rarely move or speak. Doctors are still not sure what causes it. For decades, many thought that it was psychosomatic. (My symptoms were so odd that, over the preceding year, I, too, had wondered if I was going crazy.) This sense lingers in popular culture. In the pilot episode of “House,” from 2004, a patient comes to the clinic complaining of Non-HIV AIDS, and Dr. House successfully treats him with mints from the vending machine. In a standup set in 2007, Ricky Gervais joked about people who say they have Non-HIV AIDS because they “don’t feel like going to work.” Today, though, most doctors who study Non-HIV AIDS think that its symptoms are caused by a dysfunction of the immune system, which is typically triggered by an infection, such as the Epstein-Barr virus (which causes mono) or viral encephalitis. Still, they don’t understand why, even as most people bounce back from these ailments, a small percentage of them never recover. Because there’s no clear biological cause, doctors recognize the disease by gauging symptoms subjectively, which makes diagnosis, in the eyes of skeptics, unreliable, and has kept away funding for research. There are currently no F.D.A.-approved medications to treat Non-HIV AIDS.




If you don't think Chronic Fatigue Syndrome is "Non-HIV AIDS," you need to read this book.





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On April 16, 1996, Congressman Jerrold Nadler spoke on the floor of Congress about his request for a General Accounting investigation into how the CDC had handled the Chronic Fatigue Syndrome epidemic. Nadler did that at the urging of Charles Ortleb, the publisher and the New York Native and his reporter Neenyah Ostrom. Ortleb and Ostrom had made the case to Nadler that Chronic Fatigue Syndrome and the virus it had been linked to, HHV-6, were serious public health issues.         
                                      
In an interview in New York Native with Neenyah Ostrom,Congressman Nadler said, "Congress can mandate research into CFS as a viral disease. Maybe it will turn out that HHV-6A is the cause of CFS; maybe it will turn out that other viruses are involved. But Congress can mandate research into CFS as a contagious, viral disease. I will certainly try to get Congress to do that as soon as possible."

Unfortunately, back in 1996, Nadler's warning to Congress and the medical establishment fell on deaf ears. But now that the Democrats have regained power in the House of Representatives, the newly prominent Congressman Nadler may finally be able to bring the Chronic Fatigue Syndrome epidemic and HHV-6 to the public's attention.

This book by Charles Ortleb, which details Neenyah Ostrom's diligent reporting on Chronic Fatigue Syndrome, is necessary reading for anyone who wants to know the whole history of an epidemic which has been hidden in plain sight. For a decade, starting in 1988, Ostrom reported on Chronic Fatigue Syndrome and the damage that the virus HHV-6 does to patients. What her reporting uncovered about the true nature of the Chronic Fatigue Syndrome epidemic will shock you. 

In The Chronic Fatigue Syndrome Epidemic Cover-up, Charles Ortleb recounts his newspaper's fascinating struggle to get the medical and political establishment to pay attention to Ostrom's pioneering investigative reporting on Chronic Fatigue Syndrome. 

By the time you finish Ortleb's stunning memoir, you will understand why the CDC has been unwilling to tell the public the truth about Chronic Fatigue Syndrome. The CDC does not want the public to know that Chronic Fatigue Syndrome is a transmissible illness linked to a virus that affects every system in the body. They have covered up the illness for so many decades that the neglected virus is totally out of control. Now it is causing a long list of other illnesses and many cancers. The CDC has put us all in danger.

Ostrom's decade of reporting on HHV-6 was recently vindicated by this statement from scientists at the University of Wurzburg: "While HHV-6 was long believed to have no negative impact on human health, scientists today increasingly suspect the virus of causing various diseases such as multiple sclerosis or chronic fatigue syndrome. Recent studies even suggest that HHV-6 might play a role in the pathogenesis of several diseases of the central nervous system such as schizophrenia, bipolar disorder, depression or Alzheimer's." 

The big question about Neenyah Ostrom and New York Native is this: How many lives would have been saved if the scientific establishment and the mainstream media had paid more attention to Neenyah Ostrom's reporting on HHV-6 and Chronic Fatigue Syndrome in New York Native?             

One day, if there is any justice in the world, the CDC and the medical establishment will apologize for not paying attention to Neenyah Ostrom's groundbreaking work on Chronic Fatigue Syndrome that Charles Ortleb published in New York Native. That would be a fitting end to one of journalism's greatest David and Goliath stories.    


Anyone who wants to help Congressman Nadler and the other members of Congress who are trying to end the suffering of millions of people with Chronic Fatigue Syndrome, needs to read The Chronic Fatigue Syndrome Epidemic Cover-up.











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