usedtobeperkytina
Senior Member
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- Clay, Alabama
I e-mailed 60 Minutes twice. The second e-mail got a response that I should send a snail mail letter.
I have been very busy since then. I had it on my list of things to do. And I finally got to it.
But I want to be accurate. So, please let me know if you see something here that is not accurate. I also welcome any constructive criticism.
The story or Chronic Fatigue Syndrome and Xenotropic Murine Leukemia Virus-related Virus would be a good fit for your program.
New: In October 2008, Science Journal published a Whittemore-Peterson Institute for Neuro-immune Disease study of their discovery of an active retrovirus in 67% of CFS patients and only 4% of healthy controls. The institute says later tests showed 98% of CFS patients showed antibodies for this recently-discovered virus.
Broad Public Interest: In vitro tests show a high likelihood that this virus is transmitted through blood. At the Chronic Fatigue Syndrome Advisory Committee meeting in late October 2008, the main topics was the new virus discovery and concern of contamination in the nation’s blood supply. Some there advised CFS patients against donating blood. They called on Jerry Holmburg, the senior advisor for blood policy in the US Department of Health and Human Services, to speak on the topic with about a day’s notice. He stated they will start testing as soon as an FDA approved test is developed. Dr. Daniel Peterson, with the WPI, said he has been contacted by attorneys considering representing people who think they became sick with CFS from contaminated blood transfusions.
Government Failure: The US Center for Disease Control and National Institutes of Health have focused their attention on possible psychiatric causes, despite numerous published studies showing CFS patients have signs of a dysfunctioning immune system and latent virus activations, both of which point to a retrovirus infection. Meanwhile, private labs have seen evidence and pursued possible viral causes for CFS. How can an independent lab with private funds find a virus in only two years when the CDC and NIH was supposed to be studying CFS for twenty years? Bias, neglect, corruption, or cover up are all possibilities.
Conflict: The XMRV announcement has led to some patients demanding the resignation of William Reeves, director of the CDC’s CFS Research Program after he made critical comments on the WPI study as published in The New York Times. One of the recommendations of the CFSAC, a result from both their May and October meetings, was that the CDC “establish progressive leadership at the CDC that can achieve efficient, meaningful progress in CFS research, clinical care and education.”
“Outbreaks” of an illness, later labeled chronic fatigue syndrome, started being reported to the CDC in the mid-1980s. The complexity of the illness along with failed early attempts to find the cause, led to many government and private researchers and clinicians dismissing the illness as psychiatric, even saying it is a form of depression. Contributing to this conclusion was that 70% of patients are female, although men and children have also been diagnosed. Many doctors consider CFS to be a "wastebasket" diagnosis and not a disease with a separate entity. Published study results in the recent 10-15 years have not changed this deeply ingrained paradigm.
This situation resulted in only 15% of people with CFS in the US, according to the CDC latest report, not being accurately diagnosed. This has led to worldwide suffering and over-prescribing of anti-depressants. Estimates from the CDC now say that 1 million to 4 million actually have the illness. With very few “experts” in the field of CFS care, some patients spend much money traveling to other states in hopes of finding a knowledgeable doctor.
A person with CFS may look well, but some are virtually invisible to the public as their disability has led them to be housebound and a few even bed bound. Others with a milder version still have cut back on many normal activities, social, religious and otherwise, just so they can continue working. The cost to the government in Social Security Association disability benefits and loss of productive work force, in addition to money spent on standard and alternative treatments, is a drain to all of society.
All of this has led some to call for an investigation into the failure of government agencies to follow the science and end this mess years earlier.
Tina
I have been very busy since then. I had it on my list of things to do. And I finally got to it.
But I want to be accurate. So, please let me know if you see something here that is not accurate. I also welcome any constructive criticism.
The story or Chronic Fatigue Syndrome and Xenotropic Murine Leukemia Virus-related Virus would be a good fit for your program.
New: In October 2008, Science Journal published a Whittemore-Peterson Institute for Neuro-immune Disease study of their discovery of an active retrovirus in 67% of CFS patients and only 4% of healthy controls. The institute says later tests showed 98% of CFS patients showed antibodies for this recently-discovered virus.
Broad Public Interest: In vitro tests show a high likelihood that this virus is transmitted through blood. At the Chronic Fatigue Syndrome Advisory Committee meeting in late October 2008, the main topics was the new virus discovery and concern of contamination in the nation’s blood supply. Some there advised CFS patients against donating blood. They called on Jerry Holmburg, the senior advisor for blood policy in the US Department of Health and Human Services, to speak on the topic with about a day’s notice. He stated they will start testing as soon as an FDA approved test is developed. Dr. Daniel Peterson, with the WPI, said he has been contacted by attorneys considering representing people who think they became sick with CFS from contaminated blood transfusions.
Government Failure: The US Center for Disease Control and National Institutes of Health have focused their attention on possible psychiatric causes, despite numerous published studies showing CFS patients have signs of a dysfunctioning immune system and latent virus activations, both of which point to a retrovirus infection. Meanwhile, private labs have seen evidence and pursued possible viral causes for CFS. How can an independent lab with private funds find a virus in only two years when the CDC and NIH was supposed to be studying CFS for twenty years? Bias, neglect, corruption, or cover up are all possibilities.
Conflict: The XMRV announcement has led to some patients demanding the resignation of William Reeves, director of the CDC’s CFS Research Program after he made critical comments on the WPI study as published in The New York Times. One of the recommendations of the CFSAC, a result from both their May and October meetings, was that the CDC “establish progressive leadership at the CDC that can achieve efficient, meaningful progress in CFS research, clinical care and education.”
“Outbreaks” of an illness, later labeled chronic fatigue syndrome, started being reported to the CDC in the mid-1980s. The complexity of the illness along with failed early attempts to find the cause, led to many government and private researchers and clinicians dismissing the illness as psychiatric, even saying it is a form of depression. Contributing to this conclusion was that 70% of patients are female, although men and children have also been diagnosed. Many doctors consider CFS to be a "wastebasket" diagnosis and not a disease with a separate entity. Published study results in the recent 10-15 years have not changed this deeply ingrained paradigm.
This situation resulted in only 15% of people with CFS in the US, according to the CDC latest report, not being accurately diagnosed. This has led to worldwide suffering and over-prescribing of anti-depressants. Estimates from the CDC now say that 1 million to 4 million actually have the illness. With very few “experts” in the field of CFS care, some patients spend much money traveling to other states in hopes of finding a knowledgeable doctor.
A person with CFS may look well, but some are virtually invisible to the public as their disability has led them to be housebound and a few even bed bound. Others with a milder version still have cut back on many normal activities, social, religious and otherwise, just so they can continue working. The cost to the government in Social Security Association disability benefits and loss of productive work force, in addition to money spent on standard and alternative treatments, is a drain to all of society.
All of this has led some to call for an investigation into the failure of government agencies to follow the science and end this mess years earlier.
Tina
