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August 2015

Research 1st News | august 2015

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Albert Einstein once wrote that "In theory, theory and practice are the same. In practice, they are not." That is precisely what I learned during a three-day visit to the Bateman Horne Center in Salt Lake City, Utah, last week.

Settling into my new role at SMCI, I wished for my first engagement to be unfiltered and right at the source: face to face with patients and their families. The trip was an opportunity to do just that. It was also a chance to discuss research collaborations with Dr. Cindy Bateman, a thought leader known and beloved by many of you and a friend of our organization who made this visit possible through one gracious invitation.

This workshop of sorts shaped, and perhaps forever, my perspective on the illness, including the plight of the sick and the very sick. I learned from the visceral, no-frills analysis by patients that they have been seriously robbed from even simple pleasures. Things that many take for granted, like taking a stroll when you want to or carry a child in your arms—or even have a child. Almost all described an admixture of raw emotions and articulated their notion of dual pain, both the physiological kind and the other type that hurt just as much: pain born out of dismissal and skepticism by others, or from that protracted chase of an elusive cure. Read More...

Yours,

Zaher Nahle
Vice President for Research and Scientific Programs
Solve ME/CFS Initiative

RESEARCH ROUNDUP

 

CDC Funding for ME/CFS Research Threatened

The $5.4 million in CDC research funding for ME/CFS has been stricken from the Senate’s version of the 2016 federal budget. As you can see from the accompanying graphic, ME/CFS was the only disease to be reduced to $0.

You have an opportunity to directly impact federal funding for ME/CFS by sending an email to the four key staff members who serve the Senators on this budget committee: Laura_friedel@appro.senate.gov; Chol_pak@appro.senate.gov; Alex_Keenan@appro.senate.gov; Lisa_bernhardt@appro.senate.gov.

For More Details, GO HERE 

 

Solve CFS BioBank Gets Retooled

The Solve CFS BioBank has been renamed the Solve CFS BioBank and Patient Registry to reflect its scope as an even more accessible and robust resource for patient-centered research. In addition to continuing to serve as a data mining and sample collection tool that captures participants’ experience with ME/CFS at the time of enrollment, the SMCI Biobank and Patient Registry will also begin to collect longitudinal data on individual subjects at multiple points in time.

TO Read More, GO HERE 

NEWS AND EVENTS

 

Humans of ME/CFS: We Want to Hear Your Story

The Solve ME/CFS Initiative is launching a campaign to help increase awareness of—and ultimately research funding for—Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. The campaign, “Humans of ME/CFS” is a takeoff of the wildly popular “Humans of New York” photoblog and Facebook page. ​

The aim of the campaign is to show the faces and stories of those suffering from ME/CFS so that those who are in charge of allocating research funds cannot deny the widespread devastation this disease has inflicted on so many for so long.

TO READ MORE, GO here.

 

SMCI Adds New Board Members

The Solve ME/CFS Initiative has added three new members to its Board of Directors: John Nicols, Sue Perpich and Susan Vitka. In keeping with our organization’s commitment to represent the patient community as passionately and accurately as possible, all three new Board members have a personal connection to the disease.

John Nicols currently serves as President and CEO of Codexis Inc., a leading San Francisco Bay Area biotechnology company that engineers and markets proprietary proteins for the world’s pharmaceutical industry.

TO READ MORE, GO here.

NEWS AND EVENTS

 

Dr. Zaher Nahle Meets with Research Colleagues

Dr. Zaher Nahle, Vice President of Research and Scientific Programs, traveled to Salt Lake City, Utah, at the end of July to meet with ME/CFS research colleagues and gain first-hand insights into the patient experience.​

Dr. Nahle began his trip at the Bateman Horne Clinic, where clinic founder Dr. Cindy Bateman hosted him for a three-day workshop focused on clinical management and research of ME/CFS patients. Dr. Nahle also met with several patients and their families. “Being able to spend time with patients was the most valuable thing I could do in the first days of my role with the Solve ME/CFS Initiative,” says Dr. Nahle. “The courage they show in the face of this horrific illness is heartwarming and humbling.”

TO READ MORE, GO HERE.

 

Defeat ME/CFS Research Plan in High Gear

The Solve ME/CFS Initiative is now in its first year of an ambitious five-year research plan—the Defeat ME/CFS Research Plan—that takes a comprehensive approach to solving ME/CFS. To date, much of the research conducted in the field has been small scale and targeted to singular aspects of the disease. Defeat ME/CFS is a comprehensive plan, which will employ a three-pronged approach to master the complexity of ME/CFS and render meaningful results, bringing us closer to a cure. Under the direction of our Vice President for Research and Scientific Programs, Dr. Zaher Nahle, we will:

TO READ MORE, GO HERE.

 

NEWS AND EVENTS

 

August 8 Is Severe ME Day

August 8 is “Severe Myalgic Encephalomyelitis Understanding and Remembrance Day.” The day, which is set aside to show support for and remembrance of the estimated 25 percent of ME/CFS patients who have a severe form of the disease, marks the birth date of Sophia Mirza. Sophia was bed-bound with severe Myalgic Encephalomyelitis. Her doctors did not believe that Myalgic Encephalomyelitis was a physical disease. She was forcibly taken from her bed and home by social workers, police officers and doctors and kept in a psychiatric facility, where she received inappropriate treatment. Sophia subsequently died of ME at the age of 32. Her post-mortem revealed widespread inflammation in the spinal cord. Sophia’s story was featured prominently in the film “Voices from the Shadows.”

 

SMCI Hosts Webinar with Dr. Peter Rowe

On July 16, the Solve ME/CFS Initiative hosted a webinar with Dr. Peter Rowe, director of the Chronic Fatigue Clinic at Johns Hopkins Children’s Center, called, “Inducing Post-Exertional Malaise in ME/CFS: A Look at the Research Evidence.” Dr. Rowe has followed up with his responses to questions that were unable to be answered during the webinar due to time limitations. Given the number of questions posed, Dr. Rowe’s responses have been featured in a series of blog posts. To watch the full video of the webinar, go here.

TO READ MORE, GO HERE.

 

 

SUPPORT US

 

Please consider joining our Sustainers Circle, where your monthly gift ensures our good work can move forward, and we can continue to bring you this free monthly resource! Visit SolveCFS.org/Donate and get started today.

At the Solve ME/CFS Initiative, we are about turning hope into action. It is donations from people just like you that make progress possible.  

Thank You!

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Please feel free to contact our office if you have any questions.
Phone: 704-364-0016
Email: SolveCFS@SolveCFS.org
Address: P.O. Box 36007, Los Angeles, CA 90036-0007

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