Research 1st News  |  July 2014   
Research 1st News is your free and informative monthly e-newsletter from the Solve ME/CFS Initiative (formerly the CFIDS Association of America). Please forward it to someone you know that may benefit from it.
At the Solve ME/CFS Initiative,we are driven by a vision of a world free of myalgic encephalomyelitis (ME)/Chronic Fatigue Syndrome (ME/CFS). We work tirelessly to leverage experience, relationships and collective knowledge to propel the ME/CFS research field to the next level so that scientific advances can translate into better care. It is because of your support that we are able to fund high-quality ME/CFS studies, foster increased collaboration among ME/CFS researchers and push the federal government to make ME/CFS a greater priority.

As we continue our efforts to make ME/CFS widely understood, diagnosable, and treatable I am keenly aware that we can’t do this alone. It will take all of us working together to eradicate this dreadful and debilitating disease. 
We hope you find strength in knowing we are here, working with you, to activate and engage a community to participate in research that will accelerate discovery. Together we can Solve ME/CFS!

Carol E Head
President and CEO
Research Digest - July: Define & Diagnose

In order for patients to be diagnosed, a disease must be defined. Chronic Fatigue Syndrome, also referred to as myalgic encephalomyelitis (ME/CFS) is currently defined by excluding other medical and psychiatric diseases that explain the symptoms. Biomarkers – or an objective and measurable indicator of a biological state – would take the “process of elimination” out of ME/CFS and therefore provide objective criteria to define and diagnose ME/CFS. Not only do disease states need to be defined but recovery from disease states also require definition.

The core signs, symptoms and decrements in specific functioning can and should be used to define what ME/CFS is and what it means to recover from ME/CFS. Signs are objective measures – think of these like biomarkers. Symptoms are how and what a patient feels. Specific functioning varies depending on the patient. Bottom line – all of these “core” components are important to defining and diagnosing ME/CFS.

This month we highlight three recent publications tackling the “core” components of ME/CFS that are important to defining and diagnosing the disease. READ MORE...

2014 Webinar Series!

Beginning in July and continuing through year-end, the Solve ME/CFS Initiative (SMCI) will be bringing you a free, monthly webinar





Anyone can RSVP to participate live. Each webinar will be recorded and posted to our website and YouTube channel within a week of the live date, so if you miss it, don’t worry! You can still have access to the great content at your convenience.


Breaking Down the Complexities of ME/CFS

In a recent three-part blog series, we explored the complexities of ME/CFS and talked about some of the work being done through our Research Institute Without Walls to break down these complexities and move discovery forward. 

Click through to read them all:


Guest Blog: Mark A. Demitrack, MD, FAPA - Neurobiology of ME/CFS

Far too often, ME/CFS patients are met with healthcare providers who do not believe in the biological nature of the disease. Patients have an understandable reticence when it comes to psychologists and psychiatrists because of the fear that their ME/CFS will be labeled as a psychological disorder rather than treated as the very real debilitating disease that it is. Yet, the medical disciplines of psychology and psychiatry have a tremendous amount to contribute to the ME/CFS community, because of their extensive knowledge of how the central nervous system works.

In this guest blog post, Mark Demitrack, MD, FAPA describes how for a long time he has advocated for and used an integrated approach to understand how the brain is involved in the biology of ME/CFS.

Did you know? You can make an automatic monthly gift to our organization. This is a way for you to spread out your commitment to solving ME/CFS without having to remember to take action every month. You have the satisfaction of being one of a small group of loyal, regular supporters.

Solve ME/CFS Initiative counts on this group, the Sustainers Circle, to make monthly or quarterly financial contributions to the organization. This creates a steady funding base that enables critical financial planning for the organization. These regular gifts are one of our most valuable resources in our fight to solve ME/CFS.

Please consider joining the Sustainers Circle. It’s easy to sign up—visit http://solvecfs.org/get-involved/monthly-sustainers-circle-gifts/ to set up your monthly recurring donation. If you'd like to give quarterly, contact us directly:
Erin E. Parsons-Wright
EEParsonsWright@SolveCFS.org 

Thank you for making a difference in the lives of those suffering from ME/CFS!