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FEBRUARY 2016

RESEARCH 1ST NEWS | FEBRUARY 2016

I talked about New Year’s resolutions in last month’s letter, but we are all about execution around here. Exciting programming and initiatives are planned for 2016, from developing the most promising ideas in multiple fields of research, to establishing durable collaborations with thought leaders, to sustaining our advocacy efforts across government agencies.

We are all in with our investment in biomedical research this year. And we are stretching the research dollars from your donations to put it toward rigorous work. We initiated and will continue to support recent studies from investigators with fresh perspectives new to the field like: Read More...

Yours,

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

RESEARCH ROUNDUP

 

Solve ME/CFS Initiative Registers Major Concerns over NIH Study

The National Institutes of Health is beginning to recruit participants for its in-house study of ME/CFS patients. The Solve ME/CFS Initiative has identified a number of significant questions and concerns with the design protocol of this research effort. Our organization—represented by our Vice President for Research and Scientific Programs—was immediately in contact with the NIH officials we have an existing, ongoing relationship with to express these serious concerns. We will push forward to determine what may be done to address them and ensure that this study is leveraged to the full benefit of ME/CFS patients.


TO READ MORE, GO HERE.

 

Solve ME/CFS Initiative Grades HHS Response to CFSAC Recommendations

In late January, the U.S. Department of Health & Human Services released its response to the recommendations put forth by the Chronic Fatigue Syndrome Advisory Committee at its August meeting. The Solve ME/CFS Initiative has assigned a letter grade to HHS for each recommendation based on how well the agency responded, given last year’s Institute of Medicine and Pathways to Prevention reports, which unequivocally called for federal agency focus on ME/CFS.


TO READ MORE, GO HERE.

 

RESEARCH ROUNDUP

 

Solve ME/CFS Initiative Signs Follow-Up Letter to AHRQ

The Solve ME/CFS Initiative has joined a group of patient organizations and advocates who sent a follow-up letter to the Agency for Healthcare Research and Quality (AHRQ) further detailing the group's concerns with the AHRQ Evidence Review in light of the issues with the PACE trial and the Oxford definition. AHRQ is the health services research arm of the U.S. Department of Health and Human Services (HHS).


TO READ MORE, GO HERE.

 

CDC Holds Grand Rounds Session on ME/CFS

ME/CFS will be the topic of the Center for Disease Control and Prevention’s Feb. 16 Grand Rounds session.

The monthly Grand Round webcasts summarize current knowledge, highlight how the CDC and its partners are addressing challenges and provide recommendations for the future. The process for a topic to be included in the Grand Rounds is highly competitive; health care professionals worldwide view them and reference them in their work.


TO READ MORE, GO HERE.

 

NEWS AND EVENTS

 

“Thirty Years of Disdain” Tells History of ME

Patient advocate Mary Dimmock and her son, Matthew Lazell-Fairman, a severe Myalgic Encephalomyelitis patient, have authored a document, “Thirty Years of Disdain: How HHS and a Group of Psychiatrists Buried Myalgic Encephalomyelitis.”

The thoroughly researched and thoughtfully crafted document provides an account of Matthew’s own battle with the disease, as well as a historical account of the litany of factors that have impacted research, prevented the development of effective treatments, degraded clinical care, and promoted the disbelief and disdain that ME/CFS patients endure.


TO READ MORE, GO HERE.

 

Solve ME/CFS Initiative Conducts Readership Survey

To ensure we are bringing you the most informative, useful content in the coming year, the Solve ME/CFS Initiative is conducting a readership survey. Your input is important to us.

The survey will help guide our efforts in all of our communication vehicles, including this monthly enewsletter and our print publication, the Chronicle. To take part in the brief survey, go here.

To subscribe to the Chronicle, which is mailed free of charge several times a year, 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!

GET CONNECTED

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Please feel free to contact our office if you have any questions.
Phone: 704-364-0016
Email: Research1st@solvecfs.org
5455 Wilshire Blvd., Suite 806, Los Angeles, CA. 90036

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