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OCTOBER 2015

RESEARCH 1ST NEWS | OCTOBER 2015

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October has been a busy month at the Solve ME/CFS Initiative with many events taking place in quick succession. The month began with our board meeting in the Washington, D.C., area and segued into meetings with the National Institutes of Health and Senate staff members, which you will read more about in this issue.

Following our Board meeting, I participated in the inaugural conference of the Patient Centered Outcome Research Institute (PCORI), in Arlington, Va., a meeting dedicated to bringing the voice of the patient into research and methodology by incorporating patient input and insights. In many ways, this meeting reflects the national need for patient empowerment—an ethos of our own Solve ME/CFS Initiative research program, which we advance in practice, not in theory.

I cannot think of any disease that is more worthy of representation from patients who have been disenfranchised for far too long. We are heartened that more voices of ME/CFS patients and families, like those of Brian Vastag and Whitney Dafoe, are reverberating louder and more frequently in the mainstream media, including the recent articles in the Washington Post and The Atlantic. We continue to amplify these voices through SMCI research and advocacy channels, like our Humans of ME/CFS website, and look for ways to strengthen our collective voice by working collaboratively with other ME/CFS organizations. Read More...

Yours,

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

RESEARCH ROUNDUP

 

SMCI Team Meets with NIH

On Oct. 6, SMCI President Carol Head, Research Director Dr. Zaher Nahle and Board members Diane Bean and Christine Williams met with NIH officials regarding ME/CFS research and how to increase NIH funding so that it is more consistent with the number of Americans who suffer from the disease—between 836,000 and 2.5 million according to this year’s Institute of Medicine report.

TO READ MORE, GO HERE 

 

SMCI Meets with Senate Appropriations Staff

On Oct. 5, SMCI President Carol Head and Board members Diane Bean and Christine Williams met with majority and minority staff members of the Subcommittee on Labor, HHS and Education of the Senate Appropriations Committee following their Board meeting in the Washington, D.C., area. Williams is a patient who worked for the federal government in health policy before retiring and lives in Bethesda, Md. Bean, whose daughter is a patient, worked for the State Department and also lives in Bethesda.

TO READ MORE, GO HERE 

RESEARCH ROUNDUP

 

SMCI Supplies Samples for Two New Research Studies

SMCI is providing research materials and samples to support two new ME/CFS research projects through our Solve CFS BioBank and Patient Registry. The first project, which is led by Drs. Dorothy Hudig and Isabel Silvestre at the University of Nevada, will explore genetic links as well as biochemical alterations in ME/CFS. The research is funded by an NIH exploratory grant and will begin later this month. Dr. Hudig is a senior investigator and biochemist by training who brings invaluable expertise to the field. Dr. Silvestre has a long history of studying this disease, both as an accomplished scientist and as the Scientific Director of the Simmaron Research Foundation.

TO READ MORE, GO HERE.

 

CDC Provides Status Updates on ME/CFS Work

Dr. Elizabeth Unger of the Centers for Disease Control and Prevention provided an update on the CDC’s work on ME/CFS during a one-hour public conference call Oct. 8.

In the call, Dr. Unger reported that the CDC just awarded contracts to continue the Multi-Site Clinical Assessment of CFS study for another year. Unger said that the seven clinicians and their study coordinators will convene on the CDC campus in December to review progress, exchange ideas and make plans for future work. The study, which uses a standardized approach for collecting information on the major illness domains of CFS from patients in the seven clinics, has four stages. Stage 1, which began in 2012 and includes data on 471 patients, is complete, and the results are being prepared for publication.

TO READ MORE, GO HERE.

NEWS AND EVENTS

 

SMCI Board Meets in D.C.; Adds New Member

The Solve ME/CFS Initiative (SMCI) Board of Directors convened in the Washington, D.C., area for its fall meeting Oct. 2-4. Board members and staff spent the weekend reviewing progress and sharing ideas on how to make the most impact for patients in the shortest amount of time. The group discussed recent developments in the ME/CFS field and a research strategy that will leverage those developments to the community’s best advantage.

TO READ MORE, GO HERE

 

Carol Head Invited to Join UCLA’s CTSI Patient Advocacy Board

Solve ME/CFS Initiative President Carol Head has been invited to join the Patient Advocacy Board of UCLA’s Clinical and Translational Science Institute. Board members are selected based on their role in clinical research as a health advocate and/or their status as a patient or family member with an acute or chronic disease.

TO READ MORE, GO HERE

 

NEWS AND EVENTS

 

SMCI Hosts Webinar with Dr. Alan Light

On Oct. 15, the Solve ME/CFS Initiative hosted its fourth webinar of the year featuring Dr. Alan Light, Professor of Anesthesiology at the University of Utah. Dr. Light’s presentation, “New Developments in ME/CFS Research,” attracted more than 100 attendees. To view the YouTube recording of the webinar, go here.

SMCI will hold two additional webinars this year: Nov. 19 with Dr. Dane Cook, Professor of Kinesiology at the University of Wisconsin-Madison; and Dec. 17 with Dr. Zaher Nahle, SMCI’s Vice President for Research and Scientific Programs. To register for the November webinar, go here. To register for the December webinar, go here

TO REGISTER FOR THE NOVEMBER WEBINAR, GO HERE

 

Daughter Launches Crowdrise Campaign to Honor Mother

Kaycee Mackley has launched a Crowdrise campaign to honor her mother, Chardale (Dotson) Irvine, whose hard-fought battle with ME/CFS ended earlier this year. “I watched this illness slowly take my mother’s life, which ended Feb. 22, 2015 after suffering for over 20 years,” says Kaycee. “Since her death, I have struggled to find a way to honor her life.”

Over the next six months, Kaycee will be participating in four races in her home state of Colorado to advocate for funding and raise awareness for ME/CFS. Her goal is to raise at least $2,000 to benefit the Solve ME/CFS Initiative research program.

Prior to becoming ill, Kaycee’s mother was active in athletics and in other’s lives by listening to their struggles and offering her compassion.

TO READ MORE, GO HERE

 

NEWS AND EVENTS

 

National PBS Show Features ME/CFS

Second Opinion, a national PBS show, just released its newest episode, which addresses ME/CFS. The show features Danielle Warner, sister of Solve ME/CFS Initiative Board member Aaron Paas, and her husband, Tyrone Warner. Danielle was a high school biology teacher when she was stricken with the disease, which left her bedbound for three months. She is no longer able to work and relies on Tyrone to take care of her.

The show was released to PBS stations on Oct. 12 and will air across the country many times for the next several years. Patients and their family and friends can check their local listings to see it on PBS. The show can also be viewed online at: http://secondopinion-tv.org/episode/chronic-fatigue-syndrome

 

 

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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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