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Hot Topics & Readers’ Notes – 12-07-11

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Dr. Cheney Posts Commentary on XMRV/HGRV Research

On Dec 5, ME/CFS research icon Dr. Paul Cheney posted a commentary on his PR page (“Changing Status of XMRV/HGRV research”) saying “studies out of Europe (Belgium and Germany) and the US (Cornell) as well as elsewhere which are separate from WPI, FDA, and NCI are demonstrating evidence that cannot be due to a mouse contaminant for XMRV association with CFS.” As he puts it, there’s no consensus for or against the association yet, but new technology may tell the tale. (Thanks to Jan van Roijen’s Help ME Circle for the news.)


Evidence of an Epstein-Barr Reactivation Cycle

Re: “Epstein-Barr immune T cell activity varies; may flag times of reactivation”

This new German research discovered cycles of Epstein-Barr (HHV-6) virus immune activity over about a year’s time in healthy subjects. They infer this is in response to a cycle of virus reactivation/replication, in these subjects without noticeable symptoms. Like the other known herpesviruses, once HHV-6 infects, it makes a permanent home in the body.


Norway Officially Decides to Invest Big in ME/CFS

Re: “Norway directs $350,000 to rituximab trial; plans national ME Center”

Norway’s Health Minister announced on national television that their country is dedicating 2 million kroner to the next phase of the rituximab trials for treatment of ME/CFS, and will establish a national center for ME research and care at Oslo University.


Whittemore Peterson Introduces Second Doctor

In addition to Dr. Robert Fredericks, who heads it up, the WPI’s Reno-based Center for Molecular Medicine now has a second physician on deck and already seeing patients. Dr. Cyrus Pourzan is a seasoned clinician with considerable experience employing a combination of conventional and natural healing therapies, tailored to the patient’s individual needs. Read more about about him at www.wpinstitute.org – J


Global 2012 ME Diary Project Wants You to Participate

On December 4, Dr. John Greensmith (founder of the ME Community Trust’s ME FreeForAll. org website) issued an invitation to ME/CFS patients all over the world. As we understand it, those interested in participating will send an email to mymediary@meCommunityTrust.org with “My M.E. Diary 2012” in the subject line. In this email you should provide a made-up name as your file identifier to ensure privacy. Than, according to instructions from them, starting Jan 1, 2012 every participant will make diary entries into a file in his/’her own computer. To support the system and data analysis, diarists will be charged $2 per week (or local currency equivalent) – though those who would find this a hardship may request an exemption, no questions asked. The collected data will be analyzed, and contributors may decide if they wish to participate in follow-up projects.

For more information see the My M.E. Diary 2012 Trial facebook page.



Future Vancouver ME/FM/Lyme Center is Recruiting for a Medical Director

As some of you may know, the British Columbian government allocated $2 million for a Complex Chronic Illnesses [center for clinical care, research, and education] in Vancouver BC. Diseases like ME, Lyme disease and fibromyalgia will be treated and also investigated. The clinic is not open yet, but is currently seeking a medical director. You do not need to be Canadian to apply but you need experience in treating these diseases. Please share with possible candidates. [Find the position description and contact information HERE.

British Columbia Provincial Health Services Authority Kati Debelic (via Co-Cure Listserv)


Dr. Nancy Klimas Moving to Nova Southeastern University

Dr. Nancy Klimas, MD, one of the world’s leading ME/CFS, FM, Gulf War clinical researchers, is moving from the University of Miami to Nova Southeastern University in Davie, Florida. Reportedly she will head a new research and treatment center there. – G


“Criminal Attorney Speaks for Controversial CFS Researcher”

Recent news in the Judy Mikovits vs WPI situation is scant, but a Dec 5 ScienceInsider post by Jon Cohen quotes quotes her new attorney, Scott Freeman, as saying he hopes to get the case dismissed, though “This is an area she never thought she’d be in in her life, and she’s fighting for her life.”


1 to 2 of Every 100 People has Hepatitis C, Often ‘Silent’

Re: “Public urged to get simple blood test for Hepatitis C”

Many existing laws and regulations apply specifically to pregnant women. Several provisions of the Affordable Care Act offer new benefits for expecting mothers. Search online for “Penny Medical” if you need affordable insurance for yourself or your wife. – H


You’re Invited to a Fibromyalgia Lecture Dec 13 in Rochester, NY

The Support Group of the Fibromyalgia Association of Rochester, NY (FARNY) invites you and your family to a free educational event focused on “Living with FM.” For information about the guest expert and other details, slated for Tuesday, Dec 13 in Rochester (and to connect with the friendly FARNY group) click HERE.


Prevention Magazine Wants Mother-Daughter Illness Stories

XMRV Global Action facebook contributor Kelly L reported that “Prevention Magazine is looking for mothers and daughters who share a medical condition. This month they highlighted a thyroid condition, with another article from a medical professional giving an explanation. Send your story to mother-daughter@prevention.” Thanks, Kelly.


New Mount Sinai ME/CFS Research Center, New Energy

To read The CFS Patient Advocate (Chris Cairns’) encouraging review of the Nov 20 Mount Sinai ME/CFS Conference click HERE.  To watch his video of Dr. Kenny De Meirleir’s conference presentation on use of the experimental drug GcMAF as a therapy for ME/CFS,  click HERE. And to watch his video of Mt Sinai geneticist Dr. Eric Schadt’s lecture explaining his visionary ideas for how he will approach ME/CFS research, click HERE.    


Patients Building War Chest for ME Biomedical Research Center in the UK

Invest in ME’s patient-driven “Let’s do it for ME” campaign has raised more than £15,000 toward a goal of £100,000 to fund an initial research project for an envisioned ME Centre of Excellence in the UK – with current plans for its location at the University of East Anglia.  The proposed first project will involve gene sequencing and stool samples for gut research. If the funding doesn’t lead to research at East Anglia, another venue will be sought. Learn more about it HERE. This is the project that Get Well From ME founder Giles Meehan spoke about in his recent video.


Note: This information has not been evaluated by the FDA. It is general and anecdotal and is not meant to prevent, diagnose, treat or cure any illness, condition or disease. It is very important that you make no change in your healthcare plan or health support regimen without researching and discussing it in collaboration with your professional healthcare team.

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