SURVEY: Help Clarify the Need for a CFS/FM/Lyme Medical Center
If you have ME/CFS, fibro or Lyme and live in North America, P.A.N.D.O.R.A. is asking you to please take this survey. The information gathered will help a medical center determine the need for a Center of Excellence for NEI diseases in the Southeastern U.S. (whether it might be financially viable, and what services to provide). The survey, which reportedly has about 1,000 respondents so far, is here.
Epstein-Barr Virus ‘Paths to Cancer’ Charted
“Researchers at the Wistar Institute and Memorial Sloan-Kettering Cancer Center have teamed to publish the first annotated atlas of the Epstein-Barr virus genome, creating the most comprehensive study of how the viral genome interacts with its human host during a latent infection.” EBV establishes a latent infection in virtually 100% of those infected, and is considered responsible for at least 1% of all human cancers. The freely available atlas is designed to guide researchers in developing therapies against EBV-latent infections and associated cancers (such as B-cell lymphomas, target of the Flug & Mella rituximab study). To read more, click here.
Epstein-Barr’s Immune Evasion Trick Seen in 3D
Researchers at Ghent University report they’ve discovered the mechanism the Epstein-Barr virus uses to inactivate an immune cytokine important for the virus’s detection and elimination. They’ve actually visualized the process (involving something they call BARF1) by obtaining “3D images to atomic resolution.” Read more here.
‘Lipkin’ ME/CFS Virus Study Finally Complete
Columbia University’s Center for Infection and Immunity has announced via Facebook that the so-called ‘Lipkin’ study of viral involvement in ME/CFS is complete, and has been accepted for publication, with a release date of Tuesday, September 18. This study, led by the Center’s head, Ian Lipkin, MD, has involved 11 well-known investigators using state-of-the-art technology to search for viruses in blood samples from a well characterized, geographically distributed cohort of about 150 US ME/CFS patients (and 150 controls). They’ve of course been looking for evidence of XMRV and MLVs, but the scope of the search went far beyond that. The study will be published online Sep 18 by the open access journal mBio (http://mbio.asm.org).
UK Petition: Govt ME Advisors Should be ME Experts, Not Psychiatrists
An e-petition to HM Government’s Department of Health already has hundreds of signatures behind it, growing every day. Titled “Advisors to the government on ME (commonly referred to as CFS) should be ME experts, not psychiatrists,” the petition states: “We, the undersigned, believe that the current level of psychiatric involvement in policy for a physical disease is unethical.”
To read the petition and sign (UK residents/citizens only), go to http://epetitions.direct.gov.uk/petitions/37117.
On Obama Elevation of NIH Attention to ME/CFS
Re: “Obama Takes an Interest in Chronic Fatigue Syndrome”
…Psoriasis, which may be uncomfortable and unsightly but is not disabling in any way, gets more funding than CFS, which is more disabling than almost any other illness…. If we get some serious money thrown at this illness, and it is not wasted in trying to find out a psychological cause of CFS when there are numerous biomarkers already discovered, we may finally get somewhere. At least I hope. – M
Breakthrough Drug ‘Best Hope Yet’ for ME/CFS?
Re: “Breakthrough drug could be silver bullet for neuroinflammatory disorders”
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• Trials definitely needed for ME: This is the most promising treatment possibility for ME yet. – I
• MW151 & MW189: Best news, just praying that it won’t be long before it’s available. Even on a trial basis. – H
• Such a drug exists already: What makes it more promising than low dose naltrexone, which we already know works great for e.g. CFS/ME and MS? (It’s also pretty good for Alzheimer’s, Parkinson’s and ALS.) Who knows, maybe this new drug could be even better, but LDN is already in use and is very safe and inexpensive. – D
Thyroid Making You Fat? Webinar Thurs, Aug 30
Thyroid patient adovocate Mary Shomon and endocrinologist Kent Holtorf, MD, will host a webinar Thursday, Aug 30, on thyroid issues and weight gain. The access code is 5781234, and viewers can log in just before 5 pm Pacific (8 pm Eastern) at http://NWHyopthyroidism.org. Sponsored by the National Academy of Hypothyroidism.
ME Association Update on Tissue Bank & Biobank
More funding is needed to realize the bricks and mortar aspect of a London-based ME/CFS Tissue & Post Mortem Tissue Bank, the ME Association reports. But the ME Biobank is actively collecting and storing blood samples for research; the MEA Ramsay Research Fund has committed £40,000 toward the costs of this for another year, starting in November 2012; and a blood sample donor database that can house tissue donor information as well should be operational before Jan, 2013. (See the MEA’s full news release here.)
New Video – “Faces of Lyme” – Online Free
The Poughkeepsie Journal is doing a multi-media series on Lyme in New York State’s Hudson Valley. Reporters met with people who have been diagnosed with advanced cases of Lyme disease, and one part of the series is this full video (“Faces of Lyme” by Chrissie Williams) – allow time for download. It features interviews with four diagnosed patients, who explain their symptoms, their experiences seeking a diagnosis, and their hopes for treatment.
The Job Accommodation Network
If you have a question about workplace accommodations or the Americans with Disabilities Act (ADA), the online Job Accommodation network can help (http://AskJAN.org/). They provide free, expert, and confidential consulting services for individual employees or job seekers, employers, and professionals involved in helping them. Focused on the US, they offer information that may help others as well. All consultants “have earned at least one Master’s degree in their specialized fields, from rehab counseling to education and engineering.” Also available in Spanish.
Invisible Illness Awareness Week Sep 10-16
Lisa Copen’s Rest Ministries website (http://restministries.com) is sponsoring Invisible Illness Awareness Week, September 10-16. The theme is “Share Your Hope.” You can share your hope through pictures and see the pictures others are sharing. You can also take part in the 5-day Awareness Week virtual conference. will be conferences and other activities. But any day of the year you’ll find thoughtful, smart articles shared by people with invisible illnesses, and many suggestions for helping a friend who has an invisible illness.
Note: This information has not been evaluated by the FDA. It is general and anecdotal and is not intended 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 regiment without researching and discussing it in collaboration with your professional healthcare team.