An excerpt from The Chronic Fatigue Syndrome Epidemic Cover-up focuses on CFS leader Marc Iverson's willingness to talk about the CFS-AIDS connection.
Excerpted from the amazon bestseller, The Chronic Fatigue Syndrome Epidemic Cover-up
In the
August 27 issue, Neenyah Ostrom again covered the evolving activist politics of
chronic fatigue syndrome and the issue of the disease’s relationship to AIDS.
She noted that an editorial in the Spring/Summer 1990 issue of The CFIDS
Chronicle which was pub-lished by the CFIDS Association in Charlotte, North
Carolina, “took the courageous step of examining the possible relationship
between AIDS and [chronic fatigue syndrome].” Ostrom reported, “The editorial,
‘CFIDS and AIDS: Facing Facts,’ was written by Editors Marc M. Iverson and
Caryn H. Freese, and begins with the statement, ‘CFIDS is not AIDS.’ But after pointing out what
they consider to be the two major differences between CFIDS and ‘AIDS,’ the
editorial continues—for two pages—to describe everything that the syndromes
have in common.”
Accepting
the conventional and official wisdom, the writers tried to make the case that
AIDS was terminal and CFS was chronic and also that AIDS was sexually
transmitted while chronic fatigue syn-drome showed “a broader pattern of
transmission.” Having said that, the two writers noted, “Much can be learned
from the ‘AIDS experience.’ . . . To suggest otherwise one must be either
uninformed or disingenuous.”
Ostrom
noted that Iverson and Freese had asserted that they were “appalled and
dismayed” by the “national patient leaders and government officials who deny
the existence of any relationship between CFIDS and AIDS and oppose any
dialogue or cooperative efforts among CFIDS and AIDS organizations.”
Iverson and
Freese also wrote, “CFIDS and AIDS are running on parallel tracks,” and
they argued that CFIDS patients could learn from AIDS activists how to cope
with the “growing stigma of CFIDS.” They insisted, “To get well, we must
aggressively pursue the truth. . . . Much discussion of the similarities
and differences between these two disorders has been carried on informally
throughout the CFIDS movement for years, yet rarely are addressed
directly (or publicly) because of the enormous stigma associated with AIDS and
because many questions about the origin and nature of CFIDS have been
unresolved. . . . We believe it is time to consider the relationship between
these two epidemics in an open forum, and to explore the facts and our thoughts
and feelings about them.”
Even though
Iverson and Freese wrote, “There are stark similarities between AIDS and CFIDS
which make their relationship unique and intriguing,” the CFS patients were not
about to line up behind these two intrepid leaders and in the same issue of New
York Native, Neenyah Ostrom captured the essence of CFS patients’
resistance in the story of a mother of a child who had chronic fatigue
syndrome. The woman was furious at a recently published article [in SPIN
magazine] discussing a possible link between AIDS and CFS. Her story had been
included in a letter that had been circulated by the National CFS Association
in Kansas City.
Ostrom
reported, “In the letter, signed only ‘Kathi’ [the mother] states that she is
‘shocked and appalled that any CFIDS patient would want to be connected in any
way to AIDS.’ Kathi states that friends of her sick son no longer visited him.
‘Now that this article [about CFIDS and AIDS] is circulating everyone has
abandoned him,’ Kathi writes. ‘He now refuses to go to school on his good days
due to this horrible connection to AIDS. . . . Some of his good friends now
think he might be gay and that he really has AIDS.’ Kathi writes that the
family is relocating and will keep her son’s illness a secret in their new
hometown.”
Kathi’s
letter captured the tragic manner in which CFS patients were sucked into a
black hole of disinformation and militant denial.
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 evensuggest 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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