Dreambirdie
work in progress
- Messages
- 5,569
- Location
- N. California
Dear 60 MINUTES Story Editor:
For the past 32 years I have been living with CFIDS (Chronic Fatigue Immune Deficiency Syndrome), aka CFS (Chronic Fatigue Syndrome) or ME (Myalgic Encephalomyelitis). When my health fell apart, more than three decades ago, I was a fit athletic college student. I skied all winter long and swam a mile each day after classes. Then one day out of the blue, I was ambushed by the worst "flu" Id ever had, and as it turned this flu never went away. I went from one doctor to the next and the next and the next, only to be dismissed as a malin-gerer or a "mental case." For the next seven years I had absolutely NO diagnosis for my condition. Along the way, I endured the most severe bouts of debilitating exhaustion I had ever experienced in my life, unimaginable to those who have never known it. Though it would be impossible to summarize ALL THAT I HAVE DONE to attempt to heal myself of this hideous illness, suffice it to say I have left no stone unturned in the pursuit of a cure. Despite my ongoing persistent efforts, and my ocassional remissions, I am still only minimally functional, unable to work or travel, and confined mostly to my home.
Unfortunately, I am not the only one in this predicament. There are over 17 million people world wide, and between 1 million and 4 million people in the US alone, who suffer from CFS.
Sadly, our government agencies have failed us. The amount of funding that has gone towards CFS research is pathetically low compared to money invested in other illnesses. The CDCs changing definition of CFS has allowed those that may be suffering from depression or 'idiopathic chronic fatigue' to be included in the patient cohort of CFS studies. Their promotion of CBT/GET as treatment for CFS is a joke. And the CDC history around the Elaine DeFrietas study, dismissed so arrogantly by them in the 90s, is scandalous and warrants serious investigation.
The recent news of the discovery of the XMRV virus in 68 of the 101 blood samples of the CFS patients tested at the Whittmore Peterson Institute in Nevada has been both a HUGE relief and validation for those of us who suffer with this debilitating disease, and a scare at the same time. Considering that this virus can cause prostate cancer and other serious illnesses, is a sobering thought.
I'm writing to you at 60 MINUTES to kindly request that you please do a segment about CFS, and especially on the breakthrough of the recent XMRV findings.
Thank you so much for reading this letter and for the great work that you do.
With all the best to you! xxxxxxxx
CFS EXPERTS ON VIDEO and CONTACT INFORMATION
Judy Mikovits, Ph.D., director of research at the Whittemore Peterson Institute for Neuro-Immune Disease in Reno, Nevada, and co-author of the recent research on the XMRV retrovirus findings.
http://nevadanewsmakers.com/video/default.asp?showID=938
WPI media coordinator Frankie Vigil
Tel: 775-336-4555; Mobile: 775-287-5924; Fax:775-323-9021
frankie.vigil@rrpartners.com
Nancy Klimas, M.D., director of Dept. Immunology at the University of Miami School of Medicine and the V.A. Medical Center, and nationally known for her research and treatment of CFS, Chief Medical Officer of the brand new CFS Center. http://www.cfsclinic.com/
TEl: 305-243-3291
NKlimas@med.miami.edu
VIDEOS of Dr. Nancy Klimas
http://www.youtube.com/watch?v=5ftbsOkYVxE&feature=autofb
http://cfsknowledgecenter.ning.com/video/klimas-on-xmrv
Donnica L. Moore, MD, President, Sapphire Women's Health Group LLC,
highly regarded as a womens health expert and advocate, and regular GMA Health contributor, on CFS and other health related topics.
www.drdonnica.com
Tel: 908-234-2702; Fax: 908-234-2703
DrDonnica@aol.com
VIDEOS of Dr. Donnica Moore on Good Morning America
http://www.youtube.com/watch?v=JFBY8UKMVp0
http://abcnews.go.com/Video/playerIndex?id=8664151
CFSAC MEETING, October 30, 2009
The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Department of Health and Human Services on issues related to chronic fatigue syndrome (CFS).
http://videocast.nih.gov/Summary.asp?File=15408
http://videocast.nih.gov/Summary.asp?File=15409
RECENT INTERNET ARTICLES ON CFS and XMRV
The NY Times Q & A with Dr. Nancy Klimas
http://consults.blogs.nytimes.com/2009/10/15/readers-ask-a-virus-linked-to-chronic-fatigue-syndrome/
The NY Times Expert Answers on CFS (Dr. Nancy Klimas)
http://consults.blogs.nytimes.com/2...cp=1&sq=chronic fatigue syndrome&st=cseExpert
From BioEd Online
http://www.bioedonline.org/news/news.cfm?art=5704
Assorted Science Magazine articles
http://www.sciencemag.org/cgi/content/abstract/1179052v1
http://www.scientificamerican.com/article.cfm?id=chronic-fatigue-syndrome-retrovirus#comments
http://www.cancer.gov/newscenter/pressreleases/CFSxmrv
http://www.nature.com/news/2009/091008/full/news.2009.983.html
http://www.sciencenews.org/view/gen..._might_be_culprit_in_chronic_fatigue_syndrome
Assorted Other Media articles
http://www.nytimes.com/2009/10/09/health/research/09virus.html?_r=2
http://www.npr.org/templates/story/story.php?storyId=113613955
http://online.wsj.com/article/SB125501227713473525.html
http://www.latimes.com/news/nationworld/nation/la-sci-fatigue9-2009oct09,0,3368993.story
CFS FUNDING INFO
http://www.hhs.gov/advcomcfs/meetings/presentations/mcclearyoct09.pdf
http://www.pandoranet.info/documents/LONG_VERSION_PANDORA_OPED_JULY_12,_2007.pdf
For the past 32 years I have been living with CFIDS (Chronic Fatigue Immune Deficiency Syndrome), aka CFS (Chronic Fatigue Syndrome) or ME (Myalgic Encephalomyelitis). When my health fell apart, more than three decades ago, I was a fit athletic college student. I skied all winter long and swam a mile each day after classes. Then one day out of the blue, I was ambushed by the worst "flu" Id ever had, and as it turned this flu never went away. I went from one doctor to the next and the next and the next, only to be dismissed as a malin-gerer or a "mental case." For the next seven years I had absolutely NO diagnosis for my condition. Along the way, I endured the most severe bouts of debilitating exhaustion I had ever experienced in my life, unimaginable to those who have never known it. Though it would be impossible to summarize ALL THAT I HAVE DONE to attempt to heal myself of this hideous illness, suffice it to say I have left no stone unturned in the pursuit of a cure. Despite my ongoing persistent efforts, and my ocassional remissions, I am still only minimally functional, unable to work or travel, and confined mostly to my home.
Unfortunately, I am not the only one in this predicament. There are over 17 million people world wide, and between 1 million and 4 million people in the US alone, who suffer from CFS.
Sadly, our government agencies have failed us. The amount of funding that has gone towards CFS research is pathetically low compared to money invested in other illnesses. The CDCs changing definition of CFS has allowed those that may be suffering from depression or 'idiopathic chronic fatigue' to be included in the patient cohort of CFS studies. Their promotion of CBT/GET as treatment for CFS is a joke. And the CDC history around the Elaine DeFrietas study, dismissed so arrogantly by them in the 90s, is scandalous and warrants serious investigation.
The recent news of the discovery of the XMRV virus in 68 of the 101 blood samples of the CFS patients tested at the Whittmore Peterson Institute in Nevada has been both a HUGE relief and validation for those of us who suffer with this debilitating disease, and a scare at the same time. Considering that this virus can cause prostate cancer and other serious illnesses, is a sobering thought.
I'm writing to you at 60 MINUTES to kindly request that you please do a segment about CFS, and especially on the breakthrough of the recent XMRV findings.
Thank you so much for reading this letter and for the great work that you do.
With all the best to you! xxxxxxxx
CFS EXPERTS ON VIDEO and CONTACT INFORMATION
Judy Mikovits, Ph.D., director of research at the Whittemore Peterson Institute for Neuro-Immune Disease in Reno, Nevada, and co-author of the recent research on the XMRV retrovirus findings.
http://nevadanewsmakers.com/video/default.asp?showID=938
WPI media coordinator Frankie Vigil
Tel: 775-336-4555; Mobile: 775-287-5924; Fax:775-323-9021
frankie.vigil@rrpartners.com
Nancy Klimas, M.D., director of Dept. Immunology at the University of Miami School of Medicine and the V.A. Medical Center, and nationally known for her research and treatment of CFS, Chief Medical Officer of the brand new CFS Center. http://www.cfsclinic.com/
TEl: 305-243-3291
NKlimas@med.miami.edu
VIDEOS of Dr. Nancy Klimas
http://www.youtube.com/watch?v=5ftbsOkYVxE&feature=autofb
http://cfsknowledgecenter.ning.com/video/klimas-on-xmrv
Donnica L. Moore, MD, President, Sapphire Women's Health Group LLC,
highly regarded as a womens health expert and advocate, and regular GMA Health contributor, on CFS and other health related topics.
www.drdonnica.com
Tel: 908-234-2702; Fax: 908-234-2703
DrDonnica@aol.com
VIDEOS of Dr. Donnica Moore on Good Morning America
http://www.youtube.com/watch?v=JFBY8UKMVp0
http://abcnews.go.com/Video/playerIndex?id=8664151
CFSAC MEETING, October 30, 2009
The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Department of Health and Human Services on issues related to chronic fatigue syndrome (CFS).
http://videocast.nih.gov/Summary.asp?File=15408
http://videocast.nih.gov/Summary.asp?File=15409
RECENT INTERNET ARTICLES ON CFS and XMRV
The NY Times Q & A with Dr. Nancy Klimas
http://consults.blogs.nytimes.com/2009/10/15/readers-ask-a-virus-linked-to-chronic-fatigue-syndrome/
The NY Times Expert Answers on CFS (Dr. Nancy Klimas)
http://consults.blogs.nytimes.com/2...cp=1&sq=chronic fatigue syndrome&st=cseExpert
From BioEd Online
http://www.bioedonline.org/news/news.cfm?art=5704
Assorted Science Magazine articles
http://www.sciencemag.org/cgi/content/abstract/1179052v1
http://www.scientificamerican.com/article.cfm?id=chronic-fatigue-syndrome-retrovirus#comments
http://www.cancer.gov/newscenter/pressreleases/CFSxmrv
http://www.nature.com/news/2009/091008/full/news.2009.983.html
http://www.sciencenews.org/view/gen..._might_be_culprit_in_chronic_fatigue_syndrome
Assorted Other Media articles
http://www.nytimes.com/2009/10/09/health/research/09virus.html?_r=2
http://www.npr.org/templates/story/story.php?storyId=113613955
http://online.wsj.com/article/SB125501227713473525.html
http://www.latimes.com/news/nationworld/nation/la-sci-fatigue9-2009oct09,0,3368993.story
CFS FUNDING INFO
http://www.hhs.gov/advcomcfs/meetings/presentations/mcclearyoct09.pdf
http://www.pandoranet.info/documents/LONG_VERSION_PANDORA_OPED_JULY_12,_2007.pdf