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

Deferral Needed for Proper ICD Proposal Evaluation

As MEadvocacy reported on October 6, 2018 (read blog here), a meeting took place on September 11 and 12, 2018 by the ICD-10 Coordination and Maintenance (C & M) Committee Meeting of the National Center for Health Statistics (NCHS) - the federal agency under the auspices of Centers for Disease Control and Prevention (CDC) in charge of the ICD-10-CM classifications of diseases in the US. Although the topic of chronic fatigue syndrome (CFS) did not appear in the meeting agenda, Donna Pickett presented proposals for changes to the ICD-10-CM coding for CFS, myalgic encephalomyelitis (ME), post-viral fatigue syndrome (PVFS) and systemic exertion intolerance disease (SEID). Continue reading

SEID Classification Usurping ME Must Be Stopped

STATING POSITION ON THE ICD 10 PROPOSAL It has come to MEadvocacy’s attention that a meeting for US ICD-10-CM coding by the Coordination and Maintenance committee took place on Sept. 12, 2018 with a discussion on the topic of changes to chronic fatigue syndrome (CFS) coding. These changes will affect the diagnostic coding for myalgic encephalomyelitis. This topic was not part of the agenda and ME stakeholders only found out about it two weeks later. (see details of the meeting in Gabby Klein’s blog here) MEadvocacy is reviewing the proposal for placing Systemic Exertion Intolerance Disease (SEID) and Chronic Fatigue Syndrome (CFS) in the same ICD heading under Brain Disorders with myalgic encephalomyelitis.   Continue reading


The US federally chartered Chronic Fatigue Syndrome Advisory Committee (CFSAC) – formerly known as the Chronic Fatigue Syndrome Coordinating Committee – was established by the Secretary of Health and Human Services on September 5, 2002. Continue reading