Rotary Considers Adoption of ME

  Due to the hard work of Jim and Pam Lutey, Rotary International Board is considering a proposal to encourage research, education and funding for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). MEadvocacyOrg appreciates the advocacy efforts of the Luteys who initiated this proposal through their local Rotary in Colorado. Read about the proposal and what adoption by Rotary could mean for ME patients. Continue reading

Every Day Should Be Severe ME Day

Earlier this month, the myalgic encephalomyelitis (ME) community recognized Severe ME Day of Understanding and Awareness. Every day should be Severe ME Day - and at MEadvocacyOrg, that is exactly what we strive to do. August 8th - as a dedicated day to raise awareness of the plight of the severely affected ME patients - was conceived in 2013 by Diane, the mother of a severely affected ME patient, and was subsequently taken on by The 25% M.E. Group. Continue reading

ME Activists meet with HHS - Calls to Action

On July 8, 2019, activist Eileen Holderman and Gabby Klein, met in Washington, DC with a Senior Advisor of the Office of Intergovernmental and External Affairs of the Department of Health and Human Services (HHS) to discuss the requests in the Open Letter to Secretary Azar and to deliver the petition approaching 7,000 signatures. You can read all the correspondence that led up to the meeting and the letter following the meeting with HHS here. Continue reading

Advocating for ME-ICC in Washington, DC

  It has been 50 years since the World Health Organization classified myalgic encephalomyelitis (ME) as a neurological disease in 1969. Thirty plus years of misinformation about the harsh reality ME patients face has led to a crisis of grossly inadequate patient care. For decades patients have dealt with doctors who were given inaccurate information leading to denied disability claims and blaming patients for their symptoms. MEadvocacy was created to promote and educate for the distinct disease myalgic encephalomyelitis, including severe patients. The key to getting proper recognition and proper care in any disease is a clear description. Judging by what we are witnessing from the NIH and CDC, we have a long way to go before ME is properly recognized in the US. Continue reading

May 12 International Awareness Day

  GUEST BLOG - from May 12, 2019, marks the 27th anniversary of International Awareness Day for Complex Immunological & Neurological Diseases (CIND) and the 7th anniversary of Continue reading

Open Letter to Secretary Azar and Calls to Action

Open Letter to Secretary Azar On April 9, 2019, ME advocates Eileen Holderman and Gabby Klein sent an open letter to the Secretary of the U.S. Department of Health and Human Services (HHS), Alex M. Azar II. The letter urges Secretary Azar to implement the International Consensus Criteria (ICC), disseminate the International Consensus Primer (IC Primer), use the name Myalgic Encephalomyelitis and to stop the campaign to implement, disseminate and code systemic exertion intolerance disease (SEID). Continue reading

SEID is Killing ME

Advocating in the United States for the disease myalgic encephalomyelitis (ME) has reached a new challenge that threatens the very core of the recognition for the disease. While some advocacy organizations have diverged and taken the alarming path of partnering with the US Health and Human Services (HHS) in adopting, using and educating with the government constructed "systemic exertion intolerance disease" (SEID), which does not define a distinct disease - MEadvocacy remains focused on advocating for the specific acquired neuroimmune disease ME as defined by international ME experts. This blog covers the challenges ahead for patients who have ME as described in the International Consensus Criteria (ICC) getting proper care and treatments.  It also details what ME advocates can do to ensure that the distinct disease ME per ICC gets adopted by HHS. Continue reading

Revitalized Website - Same Focus

We are excited to announce the revitalization of our website is complete. Here is an overview of the changes we have made since the project began last summer. Continue reading

Looking Back and Preparing for Road Ahead

  The end of 2018 is fast approaching.  MEadvocacy has continued efforts advocating for people with myalgic encephalomyelitis (ME) as defined by our ME experts using the International Consensus Criteria (ICC). We are currently putting the finishing touches to the upgrade of our website in order to deliver a better output and be more user-friendly. We are grateful for the generous donations making it possible to update and continue our website. Continue reading

MEadvocacy’s Comments Rejecting Proposed ICD-10-CM Changes

The CDC’s program specialist for ICD-10 Coordination and Maintenance Committee would not defer the Nov 13, 2018 due date for comments on the proposal to move CFS to the same umbrella heading as ME and the addition of a new code for SEID under the same heading as well - Other disorders of the brain. In an effort to protect patients with ME from being harmed by improper classification, MEadvocacy Advisory Committee has submitted a comment opposing this change. We urge all patients and advocates to email C&M Committee to voice the concern that ME patients are not well served by this change. Continue reading