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

February 27, 2015

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). READ MORE…

Guest Blog: Changing the Conversation – IOM Report Sparks Re-evaluation of ME/CFS in the Media

February 13, 2015

On Tuesday the IOM released its report, “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness”. This landmark report has been highlighted the media this week in more than 300 articles including JAMA, Annals, Science, Nature and a host of accessible lay media including NYT, Al Jazeera America, NPR, CBS Online and HealthDay. In this guest blog, Cort Johnson discusses how the IOM report is changing the conversation. READ MORE…

Pearls of Wisdom from a CFS Physician, part 3

February 13, 2015

In this third and final installment of our 3-part blog series, Pearls of Wisdom from an ME/CFS Physician, Dr Lucinda Bateman speaks to the importance of diagnosing and treating comorbid conditions. READ MORE…

Wanted: Patient Participation in Quality of ME/CFS Medical Care Survey

January 23, 2015

The Chronic Fatigue Syndrome Advisory Committee’s Centers of Excellence Working Group invites the participation of all ME/CFS patients, 18 years of age and older, worldwide, but particularly within the United States, to participate in an online survey the purpose of which is to determine the […]

Restructuring Medical Research

December 5, 2014

In the US, it takes an average of 12 years for an experimental drug to travel from the laboratory to your medicine cabinet; the chance for a new drug to actually make it to market is only 1 in 5,000. Diagnosis takes far too long and treatment options for people with ME/CFS have not improved much. So how can the status quo be changed? In this post, we discuss the need to restructure medical research. READ MORE…

Gift Registry for a Cure

December 3, 2014

When the sister of our board member Aaron Paas, Danielle, became ill with ME/CFS , like so many patients she went from vibrant and busy to severely ill and debilitated almost overnight. Aaron and his wife, Haley, wanted a powerful way to help people understand a little bit about what Danielle’s life is really like. LEARN MORE…

Giving Tuesday 2014 – Join the 10/$12 Challenge!

December 2, 2014

We gave thanks on Thanksgiving, got great shopping deals on Black Friday and Cyber Monday, and now it is Giving Tuesday, a global day for giving thanks and giving back. It’s not about saving money but changing lives and anyone can play a part. LEARN MORE…

SMCI Survey Data Analyzed for Publication

November 7, 2014

Leonard A. Jason, along with Laura Nicholson, Diana Ohanian, Kelly O’Connor, & Abigail Brown, all of DePaul University are preparing a paper titled, “ME/CFS Patient Perspectives on Name Change & Priorities for Healthcare Provider Education.” This paper is based on the results of an SMCI survey facilitated prior to an IOM committee meeting earlier this year. Read the summary now, in advance of publication…