Tuesday, August 31, 2010

Canadian Researchers Seek Participants To Prove Viral Cause Of ME/CFS

Jenna McMurray, Calgary Sun

Alberta researchers hoping to prove once and for all a debilitating syndrome is viral in origin are launching an ambitious study in Calgary and Edmonton.

Outbreaks of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) have been documented since 1930, but have no known cause or accepted diagnostic tests.

Recent research has argued both for and against the theory that ME/CFS, which causes exhaustion, sleep disorders, cognitive problems, and muscle and joint pain, is linked to a retrovirus called XMRV, a relative of HIV.

Dr. Eleanor Stein, a Calgary ME/CFS specialist and researcher, said a study launching in Calgary will look to confirm if the syndrome is in fact linked with the retrovirus, which is tricky to find and treat.

“The retrovirus actually fits itself into our own DNA so that when our DNA replicates, the retrovirus replicates with it,” she said.

There is no known treatment for ME/CFS and it is estimated more than 300,000 Canadians may be affected.

Stein will be joined by Dr. Lorne Tyrrell, founding director of the Li Ka Shing Institute of Virology in Edmonton, and Dr. Michael Houghton of the University of Alberta, who holds the Canada Excellence Research Chair in Virology, for a preliminary study next month.

Approximately 100 participants — 50 diagnosed with ME/CFS and 50 healthy —are needed between Calgary and Edmonton.

The subjects will answer questionnaires and have blood drawn ideally by the end of September, said Stein, so the research team has enough time to gather data and apply for grants early next year to fund a larger study.

Patients severely affected by ME/CFS are invited to join the study as well, as the team can draw blood at their residences.

Interested Calgarians are asked to call 403-287-9941 and Edmontonians 780-492-8415.


Monday, August 30, 2010

XMRV Testing in Europe

RED Laboratories has licensed the proprietary XMRV test from WP Biotechnologies, a wholly owned subsidiary of the Whittemore Peterson Institute. We use the co-culture procedure, where the sample to be tested is put in contact with an infection-sensitive cell line.

XMRV is allowed to replicate in the cells for several days, resulting in significant amplification of viral titers. The amplified virus can then more easily be detected by PCR or Western Blot. This procedure is more sensitive than direct PCR.

In the future a serology test will be available, which may provide more information regarding the stage of infection and may be able to detect the presence of latent viruses that could not be detected by the co-culture technique.

Samples required for analysis, pricing.

Saturday, August 21, 2010

Another severe ME sufferer inappropriately detained in a psychiatric unit

Facebook group Help for Justine Roach:

Justine Roach, 37, is currently stuck in a psychiatric unit on the Isle of Wight.

She suffers from severe ME and is without appropriate medical care. We do not know all the details of the situation but her family is not helping and her ME/CFS friends are very worried. Understandably, she wants out.

She is bedbound and needs to be cared for, not just labelled as depressed and left. This groups sole intention is to help Justine and to secure appropriate medical care for her.

AIDS Virus different in semen than in blood

ScienceDaily (Aug. 20, 2010) — The virus that causes AIDS may undergo changes in the genital tract that make HIV-1 in semen different than what it is in the blood, according to a study led by researchers from the University of North Carolina at Chapel Hill.

Worldwide much of the transmission of HIV-1 is through sexual contact, men being the transmitting partner in a majority of cases. The new findings are significant because the nature of the virus in the male genital tract is of central importance to understanding the transmission process and the selective pressures that may impact the transmitted virus. Ultimately it is the transmitted virus that must be blocked by a vaccine or microbicide.

Thursday, August 19, 2010

Brilliant new and old Lancia Stratos

By: carscoop:

Turns out the modern-day interpretation of the iconic Lancia Stratos that took the internet by storm the past couple of weeks is in fact a real car and it will be produced. German media, including Auto Motor und Sport magazine, reported today that the Stratos is a one off -at least for now- commissioned by Michael Stoschek, owner and CEO of the German automotive supplier, Brose KG. It is not clear if the Lancia badge will be used on the final car since it's not an official product.

AMS reported that the car, which pays homage to the legendary Lancia Stratos HF of the 1970s, is being built and developed by famous Italian design house, Pininfarina, and it's possible that it could be produced in an extremely small number of copies if more very deep-pocketed customers are interested.

Wednesday, August 18, 2010

Opening of the Whittemore-Peterson Institute

Invest in ME: In a world where doing nothing about the scandal of ME has been the norm for governments, where immoral and corrupt or even criminal acts are perpetrated on ME patients and indirectly on their families by individuals and organizations who wish to maintain their influence, where it is easier for society to ignore rather than face up to the scandal of ME - the WPI shines as a beacon of hope for millions that their lives will improve.

The Whittemore Peterson Institute for Neuro Immune Disease aims to bring effective treatments to patients with illnesses that are caused by acquired dysregulation of both the immune system and the nervous system, often resulting in life long disease and disability.

The WPI will facilitate and advance patient care; research the pathophysiology of neuro-immune diseases such as ME/CFS, fibromyalgia, atypical MS, and autism; develop therapeutics, diagnostics and prevention strategies for this spectrum of diseases; and advance and support medical education and physician training.

The WPI will be based at the University of Nevada School of Medicine, Centre for Molecular Medicine, - a state-of-the-art 100,000 square foot facility on the Reno campus. The Centre houses portions of several university departments and includes research laboratories and clinical space.

Invest in ME would like to congratulate the Whittemore-Peterson Institute, its founders Mrs Annette Whittemore and Dr Daniel Peterson and Research Director Dr Judy Mikovits, Dr Vince Lombardi and the others who make up this brave new world.

And we would like to thank the Whittemore family for their often unrecognized yet crucial support and belief in this venture.

The Whittemore-Peterson Institute for Neuro-Immune Diseases offers the hope to millions that proper science will prevail and overcome the ignorance and corruption which has been allowed to destroy lives of people with ME.

As we begin our attempt to create a similar centre of Excellence for ME in the UK Invest in ME wish to thank publicly the WPI for their vision, determination and courage in showing the world the direction - in not looking at things the way they are, and asking why ...but in dreaming of things that never were, and asking why not?

Congratulations to the WPI from Invest in ME and our supporters and best wishes for the future.

Monday, August 16, 2010

ME/CFS Timeline & Bloodline

By: www.cfscentral.com

1934: The first known cluster outbreak of ME/CFS in the United States occurs in Los Angeles, California.

1987: New Zealand family physician J.C. Murdoch writes a letter to The Journal of the Royal Academy of General Practitioners (now known as The British Journal of General Practice) making a case that ME/CFS is not “hysteria” as some other physicians have concluded but is, he believes, a physiological disease with decreased cell-mediated immunity. He concludes the letter: “…. the syndrome is an acquired immune deficiency syndrome and we are presently searching for evidence of retrovirus infection in our patients.”

It is the first known mention of the word “retrovirus” to categorize ME/CFS.

1991: A young researcher at the University of Pennsylvania’s Wistar Institute named Dr. Elaine DeFreitas discovers evidence of a retrovirus in the blood of ME/CFS patients. The CDC, however ...

Wednesday, August 11, 2010


From 2004-2009, filmmaker Michael Thurston interviewed members of the CFS community in Vermont.

The highest price of CFS may not be its physical price. The support of family, financial safety nets, and access to medical care are guaranteed with some illness, but not with CFS.

Dr. Terry Naumann, who purchased a disability policy before contracting CFS, found that the fine print said it did not cover CFS.

Another voice, Tiffany Martin, speaks of not having enough resources for food and shelter.

INVISIBLE is available from Exile Films at http://www.invisiblethemovie.com and exilemediacorp.com.

Wednesday, August 4, 2010

XMRV Global Action

XMRV Global Action:

"Our mission is to accelerate global access to diagnostics, clinical trials, treatment, and prevention for diseases associated with the retrovirus XMRV by creating a global advocacy network."

Tuesday, August 3, 2010

Detection of an infectious retrovirus, XMRV, in blood cells of patients with chronic fatigue syndrome

By: Judy A. Mikovits,1,* Vincent C. Lombardi,1 Max A. Pfost,1 Kathryn S. Hagen1 and Francis W. Ruscetti2
1Whittemore Peterson Institute; Reno, NV USA; 2Laboratory of Experimental Immunology; Cancer and Inflammation Program; National Cancer Institute-
Frederick; Frederick USA

In October 2009, we reported the first direct isolation of infectious xenotropic murine leukemia virus-related virus (XMRV). In that study, we used a combination of biological amplification and
molecular enhancement techniques to detect XMRV in more than 75% of 101 patients with chronic fatigue syndrome (CFS). Since our report, controversy arose after the publication of several studies that failed to detect XMRV infection in their CFS patient populations.

In this addenda, we further detail the multiple detection methods we used in order
to observe XMRV infection in our CFS cohort. Our results indicate that PCR from DNA of unstimulated peripheral blood mononuclear cells is the least sensitive method for detection of XMRV in subjects’ blood. We advocate the use of more than one type of assay in order to
determine the frequency of XMRV infection in patient cohorts in future studies of the relevance of XMRV to human disease.

Patient selection poses a challenge to any study of myalgic encephalomyelitis/
chronic fatigue syndrome (ME/CFS). In our October 2009 paper, samples banked
from 2006 to 2008 were selected for our study from severely disabled patients who
fulfilled the 1994 CDC Fukuda Criteria for chronic fatigue syndrome1 as well as
the 2003 Canadian Consensus Criteria (CCC) for ME/CFS.


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