ME/CFS Worldwide Patient Alliance

The prevalence of ME/CFS, also known as chronic fatigue syndrome and myalgic encephalomyelitis, is much higher than many realize. In the USA, the illness is more prevalent than lung cancer, leukemia and AIDS combined. - CDC and SEER Report, 5-year prevalence rates. Also surprising, ME/CFS can be as disabling as late stage AIDS. - Dr. Nancy Klimas, with the University of Miami. A recent Dutch study showed one ...

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17 Million Worldwide have ME/CFS
Posted by tina on April 23rd, 2011 at 3:09 am
The prevalence of ME/CFS, also known as chronic fatigue syndrome and myalgic encephalomyelitis, is much higher than many realize. In the USA, the illness is more prevalent than lung cancer, leukemia and AIDS combined. - CDC and SEER Report, 5-year prevalence rates. Also surprising, ME/CFS can be as disabling as late stage AIDS. - Dr. Nancy Klimas, with the University of Miami. A recent Dutch study showed one in 900 children have ME/CFS, robbing them of their dreams of a productive and fu...

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The Coalition 4 ME/CFS Call to Action: Comments to DSM-5 Task Force
Posted by MCWPA admin on June 22nd, 2011 at 5:39 pm
The Coalition 4 ME/CFS Call To Action: The American Psychiatric Association (APA) is responsible for issuing the Diagnostic and Statistical Manual of Mental Disorders (DSM). The APA is developing a new version of the DSM, the DSM-5 and is currently holding the second round of public review. The DSM-5 update could have profound implications for ME/CFS patients. Your input is needed before public review is closed on Wednesday, July 15th. What you can do: The Coalition 4 ME/C...

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Message to Obama
Posted by tina on May 15th, 2011 at 1:49 am
For ME/CFS Awareness Month (May), ME/CFS patients are sending messages to President Barack Obama. Some are sending e-mails, some are sending faxes. One patient's wife spoke to Obama at a Reno Nevada town hall meeting. ME/CFS patient Priscilla Gilman drew this cartoon just for this action. See more of her work at heaveninmyfoot.com Instructions for sending the fax can be found here. ...

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Ebay Auction: How to Be Sick by Toni Bernhard
Posted by MCWPA admin on March 16th, 2011 at 1:09 am
The MCWPA is proud to announce its first Ebay auction! How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers by Toni Bernhard A personally signed copy of How to Be Sick, by Toni Bernard awaits the winning bidder! The auction proceeds will go to support the MCWPA.org’s efforts to improve the quality of life of ME/CFS patients around the world. About the book: This life-affirming, instructive and thoroughly inspiring book is a must-read for anyo...

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MCWPA Interviewed on KRFC Radio
Posted by MCWPA admin on March 10th, 2011 at 9:09 pm
On Monday 7th March, Leslie Carol Botha with KRFC in northern Colorado interviewed Tina Tidmore on the history of ME/CFS outbreaks, lack of government commitment and the infectious human retrovirus, XMRV. The program lasted one hour and was heard internationally through audio livestream. You can listen to the recording here. This was a much stronger message than is often heard in the news media. The emphasis was on biological abnormalities found in ME/CFS, particularly in the brain. ...

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Doctors Need to Know
Posted by tina on March 1st, 2011 at 6:32 am
Starting March 1, ME/CFS patients are educating physicians around the world of retrovirus discoveries (XMRV) as well as other biological abnormalities found with this disease. With medical schools and government agencies not fulfilling this role, like so many other matters, patients are doing it themselves. The campaign will last until March 15. Each patient is sending five letters and scientific documents to five physicians in their local area. These include: National Institutes of ...

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XMRV, Like HIV, Leads to Chronic Infection
Posted by MCWPA admin on February 17th, 2011 at 11:47 pm
On Feb. 16, the Journal of Virology published a study that shows the recently-discovered human retrovirus, XMRV, leads to chronic infection in multiple body organs. Previous peer-reviewed studies show a link between XMRV and patients with aggressive prostate cancer and ME/CFS, also known as myalgic encephalomyelitis and chronic fatigue syndrome. The study from the Department of Pathology and Laboratory Medicine at the Emory University School of Medicine shows Xenotropic Murine Leukemia...

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Introducing the New Zazzle Store
Posted by MCWPA admin on February 8th, 2011 at 1:56 pm
MCWPA proudly announces the opening of another online store, where supporters can buy stylish merchandise to raise awareness about XMRV and support efforts. Please join the MCWPA in making a visual impact by wearing a t-shirt or a button to a media event or public venue, giving a travel mug or grocery tote as a gift, even sending an MCWPA gift to your doctor or local political figures along with a copy of the Washington Post ad as a friendly way to educate them about XMRV. Here's the link:...

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Fax ‘em Campaign
Posted by MCWPA admin on January 30th, 2011 at 6:42 pm
On Monday December 6th the Washington Post published the first-ever informational ad on ME/CFS with emphasis on the new retroviral findings. The world watched while 17 million patients worldwide (one million in the US alone) refused to stay silent for one second longer. Fax 'em Patients again seek to make a difference, this time working together to educate the new US Congressmen and Senators. The patient-led Fax 'em Campaign aims to bring attention to the dire lack of funding, lack o...

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Radio Interview with Dr. Klimas
Posted by tina on January 28th, 2011 at 7:07 pm
In January 2011, Dr. Nancy Klimas from the University of Miami and Tina Tidmore with MCWPA on the community radio station in Lake County California. The interest to do this interview was generated from an ad placed in The Washington Post on December 6, 2010. In the interview Dr. Klimas and Tidmore explain the nature of the illness, discuss recent research controversies and discuss how the US government has failed to take the lead in solving this public health problem. Listen to the intervi...

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