XMRV Retrovirus Round up 20: Reno Gazette, NYT Letters

XMRV Retrovirus   Whittemore Peterson Institute   Science   Mikovits   Peterson   Chronic Fatigue Syndrome

XMRV Retrovirus: Round up 20: Reno Gazette, NYT Letters

Any additional material around XMRV compiled over the next few days will be added to the top of Round up 20

WordPress Shortlink: http://wp.me/p5foE-2hl

For initial Whittemore Peterson Press Release, NIH (National Institutes of Health) News Release, Science paper go here: http://wp.me/p5foE-272

Click here for all previous XMRV Round ups and postings in reverse date order: https://meagenda.wordpress.com/category/xmrv/

 

CFSAC meeting 29-30 October 2008

http://www.hhs.gov/advcomcfs/meetings/presentations/091029.html

PDFs of some of  the Public Testimonies given on 29 and 30 October, in person or via phone link and PDFs of all Written Testimony Received Prior to the Meeting Date are now available.

Chronic Fatigue Syndrome Advisory Committee (CFSAC) Presentations
October 29-30, 2009

Room 800, Hubert H. Humphrey Building
200 Independence Avenue, S.W.
Washington, D.C. 20201

Presentation

Dr David Bell’s PowerPoint slides: http://www.hhs.gov/advcomcfs/meetings/agendas/bell_factitious_102909.ppt

Public Testimony
Thursday, October 29, 2009

List of those given testimony plus some PDFs

Friday, October 30, 2009

List of those given testimony plus some PDFs

Written Testimony Received Prior to the Meeting Date

26 PDFs

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NIH Videocasts of CFSAC meeting

Videocasts of the entire proceedings will be available shortly from the NIH wesbite. I will post the links for these once these are online in a separate posting (RealPlayer required): http://videocast.nih.gov/PastEvents.asp

Dr David Bell’s presentation PowerPoint Slides can be viewed here:

http://www.hhs.gov/advcomcfs/meetings/agendas/bell_factitious_102909.ppt

YouTubes of CFSAC meeting

Clips of Dr Dan Peterson’s presentation and Annette Whittemore: http://www.youtube.com/user/Khalyal

Also on this channel plus some patient testimonies: http://www.youtube.com/user/luminescentfeeling

Dr Dan Peterson presentation in 11 parts here: http://www.youtube.com/user/luminescentfeeling#p/u/11/80yKflt0tcA

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Media

3] Reno Gazette Journal  http://www.rgj.com/

http://www.rgj.com/article/20091101/NEWS/911010346/1321

Though syndrome brings hardship, family tries to live fully, positively

By Lenita Powers • lpowers@rgj.com • November 1, 2009

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2] Reno Gazette Journal  http://www.rgj.com/

http://www.rgj.com/article/20091101/NEWS/911010345/1321

Patients hope for vaccines; researchers eye links to other diseases

By Lenita Powers • lpowers@rgj.com • November 1, 2009

As the news has spread that a retrovirus has been linked to Chronic Fatigue Syndrome, people around the world who suffer from the illness and similar neuro-immune diseases have been thanking the researchers at Whittemore-Peterson Institute for Neuro-Immune Disease in Reno for giving them new hope.

“I used to describe having the syndrome as being akin to the sound of one hand clapping,” a woman wrote from London. “Well, now all those hands are coming together in applause all around the world. I hope all you brilliant people at the WPI can hear us cheering.”

Read full article here

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1] Reno Gazette Journal http://www.rgj.com/

Medical breakthrough puts Reno in spotlight
Medical study buoys patients, earns scientists global acclaim

By Lenita Powers • lpowers@rgj.com  • October 31, 2009

Judy Mikovits remembers that “eureka” moment when she realized that she and her team of researchers at the Whittemore-Peterson Institute in Reno had discovered a new retrovirus that could lead to a possible treatment, even a vaccine, to combat Chronic Fatigue Syndrome.

“It was January 22, and we were in a San Diego restaurant called the Yard House,” said Mikovits, who had gone there with fellow scientist Vincent Lombardi to present the results of their research to Frank Ruscetti and Robert Silverman, two of the world’s leading virologists.

“We kept waiting for them to say something,” Mikovits said. “I was nauseous. Bob (Silverman) waited a long a time, and then he looked up and said, ‘Well, this is going to change their world.’”

And it has. 

Read full article (which is a long one) here

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New York Times Letters

Letters

A New Health Policy for Chronic Fatigue Syndrome

Published: October 31, 2009
 

To the Editor:

Re “A Case of Chronic Denial,” by Hillary Johnson (Op-Ed, Oct. 21), about chronic fatigue syndrome:

The Centers for Disease Control and Prevention estimates that one million to four million people in the United States have chronic fatigue syndrome, with approximately 80 percent of these cases undiagnosed. Furthermore, the C.D.C. has indicated that chronic fatigue syndrome is a debilitating illness with a yearly economic impact of at least $9.1 billion.

Despite its prevalence, morbidity and economic impact, chronic fatigue syndrome ranks near the bottom in federal research funding of more than 200 diseases and conditions.

In 25 years of research on chronic fatigue syndrome, no demonstrable progress has been made in identifying objective criteria for diagnosis and treatment. Nor have physicians been properly educated to care for these patients.

The illness continues to be stigmatized as frank malingering or a nonserious psychiatric disorder. It is time for a thorough overhaul of public health policy toward this debilitating illness.

Fred Friedberg
Stony Brook, N.Y., Oct. 23, 2009

The writer is president of the International Association for Chronic Fatigue Syndrome.

To the Editor:

I have long been struck by how similar chronic fatigue syndrome (or myalgic encephalomyelitis) is to the pathologies of gulf war syndrome, the illnesses of people subjected to low-level radiation exposure, and the maladies that plague communities near coal operations.

It seems clear that major shocks to the human system — particularly the immune, neurological and endocrine systems — can be delivered through toxic exposure, infectious agents and other extreme stressors. And once these systems are hit with sufficiently large impact, they can set off broad systemic collapse. Think of it as the human body version of a nuclear plant meltdown.

Whatever the findings of continuing research, adequate treatment mandates a health care system that provides far more effective management and active collaboration among consultant specialists than the current United States system typically provides.

Michel Lee
Scarsdale, N.Y., Oct. 21, 2009

The writer, a lawyer, is a senior adviser to the public interest organization Public Health and Sustainable Energy and formerly served on a panel of lawyers and doctors concerned about the inadequacy of regulatory standards to protect public health from the effects of environmental toxins.

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Commentary

Jean Harrison reports via Co-Cure

30 October 2009

Letters from CDC in ’92 advising against blood donation

http://www.cfs-news.org/joan.htm

These letters, on the site created by Roger Burns, are to a woman named Joan Irvine. They are from the CDC. The more damning of the two is from Dr Reeves; he cautions her against donating blood because of a possible infectious agent.

It seems appropriate, in light of today’s proceedings [Ed: CFSAC meeting 29-30 October] and those anticipated tomorrow ­ that these letters be revisited.

Joan was a tireless campaigner and a charming writer. She eventually took her own life in September of 1996, a night hard impossible to forget for those of us on the old CFS-L & CFIDS-L lists who had come to know her.

I hope that these can be well used.

In memory of Joan,

Jean Harrison

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The Definition Petition

Petition webpage: http://CFSdefinitionpetition.notlong.com
i.e. http://www.ipetitions.com/petition/empirical_defn_and_CFS_research

If you haven’t already signed it – sign the CFS Definition Petition today at: http://CFSdefinitionpetition.notlong.com

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