Research 1st News  | February 2015   
Your free and informative monthly e-newsletter from the Solve ME/CFS Initiative. Please forward to a friend and invite your family and friends to subscribe.
It has been quite a month for the ME/CFS community! With the release of the Institute of Medicine report, Beyond ME/CFS, Redefining an Illness, ME/CFS has taken a front seat in many conversations, news-feeds and focused debates.

The IOM Committee recommended new diagnostic criteria, a new name and disease classification, called for better patient care, and strongly urged increased federal funding to spur research progress. It has many fans, some detractors and many wondering "what's next?" We see this report as a critical step forward, providing the foundation for greater action to diagnose and treat patients and advance research. This opportunity must be seized.

In this issue we bring you several articles about this watershed event and begin to look at the path forward. Our final destination is a world free of ME/CFS/SEID and we are resolved to make the most of this forward momentum. Onward!

Carol E Head
President and CEO
Breaking Down the IOM Report, Suzanne D. Vernon, PhD

There is an old saying, "How do you eat an elephant? One bite at a time." 

As a throng of informed opinion pieces and knee-jerk reactions alike flood the Internet and the airwaves, the Solve ME/CFS Initiative is taking the time to fully digest the full 300 page report and subsequent clinicians guide. In this month's Research1st News, we bring you multiple informative, preliminary articles on the subject. In the weeks ahead, Dr. Vernon will put forth a series of blog posts that break down the IOM report section by section, in easy-to-read analysis and explanations while highlighting the research that is being done to describe the biology behind each of the diagnostic criteria.

If you haven't already signed up to receive notifications from our blog when a new post is published, sign up today and ensure you receive this important information as it is published. 

A NY Times opinion piece on ME/CFS, A Disease Doctors Refuse to See,  was the second highest trending article on 2/25/15

In the IOM report, the committee proposed new diagnostic criteria in the hopes of facilitating timely diagnosis and care and enhancing understanding among health care providers and the public. These criteria, based on expert analysis and the most up-to-date scientific literature, are streamlined for practical use in the clinical setting.

The clinicians guide, derived from the IOM report, is intended to help primary and specialty care clinicians better understand this complex, debilitating, and often-misunderstood illness.


In 2014, SMCI held a monthly webinar series that was very well received. If you missed a session, you can access the recordings HERE and on our YouTube channel:

Subscribe today!

We are now planning our 2015 schedule which will begin in April. Stay tuned as we will be announcing them soon!

IOM Report Released - Recommends New Diagnostic Criteria, Calls for More Research, and Proposes New Disease Name

On February 10, 2015, the Institute of Medicine released its much anticipated report, “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; Redefining an Illness”.

The report put forth four key recommendations, underscoring the profound impact that ME/CFS has on the millions who suffer from it worldwide (est. 17 million) and the importance of getting people diagnosed. In it, the committee laid out new diagnostic criteria, called for more research funding, and proposed a new name that would designate the condition as a disease vs. a syndrome. 

Guest Blog: Cort Johnson - Changing the Conversation...

When the IOM released its report, the conversation changed almost overnight.

In the first week of its release, the landmark report was highlighted the media in more than 300 articles including JAMA, Annals, Science, Nature and a host of accessible lay media including the New York Times, Al Jazeera America, NPR, CBS Online, HealthDay and an NBC Nightly News piece that featured SMCI president and CEO, Carol Head

In this guest blog, Cort Johnson discusses how the IOM report is changing the conversation in the media. 

Guest Blog: Dr. Lucinda Bateman on the Discussion Surrounding the IOM Report

Lucinda Bateman, MD, specializes in the diagnosis and management of unexplained chronic fatigue, ME/CFS and fibromyalgia. Having served on the IOM committee that produced the recent report, Beyond ME/CFS: Redefining an Illness, she brings an in-depth, well-informed opinion to the conversation surrounding the IOM report on ME/CFS, the new diagnostic criteria and the proposed name, Systemic Exertion Intolerance Disease (SEID). 

In a separate 3-part blog series, Dr. Bateman shared some of her pearls of wisdom on treatment of ME/CFS, honed through her many years of treating thousands of ME/CFS patients

You can access the series here:
     - Part 3

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