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DECEMBER 2015

RESEARCH 1ST NEWS | DECEMBER 2015

“Trust, but verify” was a favorite adage of President Ronald Reagan which defined, at least in part, the policy doctrine of a sensitive, tumultuous Cold War era. That simple, yet poignant, phrase continues to inspire variations like “Distrust and verify” or “Verify and verify,” which we often hear from officials on complex issues. So I asked myself—in light of the increased pressure on government entities to study and fund ME/CFS in 2016—are any of these adages useful in our government relations? Do we need to pivot to a new approach following this year’s Institute of Medicine report and unprecedented statements from National Institutes of Health leadership describing ME/CFS as one of the most challenging illnesses of our time?

As I mulled this over, I realized that, while a healthier relationship with federal agencies is long overdue, trust is an inconsequential factor and should not be part of our mindset in the first place. After all, skepticism is what hones scientific advances in creative industries and keeps us honest. And in the pursuit of knowledge, we must doubt, analyze, track and scrutinize any stakeholder, large or small. Productivity and focus—not trust—must shape our engagement going forward. Trust is an utterly personal exercise that is ostensibly transient as it shifts with time and other variables. We are better served as a research community shedding those factors enmeshed in personal characteristics, focusing instead on durable alliances built on objective metrics and true deliverables. Read More...

Yours,

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

RESEARCH ROUNDUP

 

Solve ME/CFS Initiative Calls for Retraction of PACE Trial

The Solve ME/CFS Initiative is one of 12 organizations that have signed a letter asking the heads of the Centers for Disease Control (CDC) and the Agency for Healthcare Research and Quality (AHRQ) to examine the issues raised by journalist David Tuller’s analysis of the U.K.’s £5 million PACE trial for ME/CFS. The PACE treatment approach is based on the theory that the debility of ME/CFS is caused by presumed deconditioning or physical weakening, which is the result of patients’ belief that they have an organic disease and that activity will harm them.

TO READ MORE, GO HERE.

 

Carol Head Joins CFSAC Subcommittee on Centers of Excellence

Solve ME/CFS Initiative President Carol Head will serve on a subcommittee of the Chronic Fatigue Syndrome Advisory Committee that is exploring the framework and feasibility of establishing ME/CFS Centers of Excellence. The subcommittee is divided into two teams: one that will make the case to the federal government that such Centers of Excellence are needed. The second—on which Head will serve—will look at how such Centers of Excellence would be structured and funded.


 

RESEARCH ROUNDUP

 

Dr. Nahle Visits Dr. Levine’s Clinic

Dr. Zaher Nahle, Vice President for Research and Scientific Programs at the Solve ME/CFS Initiative, paid a visit to Dr. Susan Levine’s ME/CFS clinic in New York City recently after participating in the Faster Cures medical conference. Dr. Levine is a leading ME/CFS and immunity specialist and the chair of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) of the Department of Health and Human Services.

During the visit, Dr. Nahle and Dr. Levine discussed a range of scientific and policy issues and the possibility for future research collaborations, including options for initiating ME/CFS clinical trials. The visit was also part of the Solve ME/CFS Initiative’s outreach to thought leaders in the field to stimulate conversations around the most pressing clinical and research issues and prepare for novel programming in 2016.

 

Francis Collins Addresses ME/CFS on Charlie Rose Show

On Nov. 4, Charlie Rose interviewed Dr. Francis Collins, head of the National Institutes of Health, for his show. In addition to hosting the Charlie Rose show, Rose also co-anchors "CBS This Morning" and is a contributing correspondent to “60 Minutes.”

About 15 minutes into the conversation, Rose raised the NIH’s recent developments regarding ME/CFS. Collins stated that he was puzzled and frustrated by how little we understand about the disease. To view the clip, which aired on PBS stations across the United States, go here.

 

NEWS AND EVENTS

 

Dec. 17 Webinar with Dr. Zaher Nahle

On Dec. 17, the Solve ME/CFS Initiative will host a webinar with Dr. Zaher Nahle, our Vice President for Research and Scientific Programs. The interactive webinar will be a roundup of the important research developments from the past year and offer a forum for patients to pose their research questions. To register for the December webinar, go here.

On Nov. 19, Dr. Dane Cook, of the University of Wisconsin-Madison, presented a webinar on “Post-Exertion Malaise: The Intersection of Biology and Behavior.” To view the YouTube recording of Dr. Cook’s webinar, go here.

 

Dr. Zaher Nahle Featured in ME/CFS Blog

Dr. Zaher Nahle, Solve ME/CFS Initiative’s Vice President for Research and Scientific Programs, was recently featured in a popular ME/CFS blog, “Health Rising.” The post, “Get Your Motor Running – Zaher Nahle Takes on Chronic Fatigue Syndrome,” was written by patient, blogger and advocate Cort Johnson.

TO READ THE POST, GO HERE

 

NEWS AND EVENTS

 

Winter Chronicle Available Online

The Winter 2015 edition of the Solve ME/CFS Initiative’s Chronicle newsletter is now available online by going here. The Winter edition features coverage of the recent National Institutes of Health announcement, as well as research and advocacy updates.

To subscribe to the Chronicle, which is available to anyone at no charge and publishes three times a year, go here.

 

Year-End Giving Guide

You should be receiving the Solve ME/CFS Initiative’s Year-End Appeal in the mail soon. The mailer contains the Solve ME/CFS Initiative Giving Guide, which provides multiple examples of ways your donation contributes to the realization of our plans. Every gift matters and brings us closer to achieving our goal of making ME/CFS understood, diagnosable and treatable. Thank you for remembering us in your year-end giving.

TO view The giving guide, GO HERE 

SUPPORT US

 

To support our important work, please visit SolveCFS.org/Donate. Consider joining our Sustainers Circle, where your monthly gift ensures we can move forward toward making ME/CFS understood, diagnosable and treatable. 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: Research1st@solvecfs.org
Address: P.O. Box 36007, Los Angeles, CA 90036-0007

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