Anne’s Journey of Survival, Perseverance and Hope with 30 years of ME

Image from Anne Space Coast Photography Anne LiConti, a myalgic encephalomyelitis (ME) patient and advocate for more than 30 years, shares her story of diagnosis, challenges as well as how she found helpful treatments to improve her quality of life. She shares her story of survival and perseverance in a series of youtube videos answering our questions and giving insights into how she found hope after many years. Whether you are a newly diagnosed or long-term person with ME (pwme), a doctor, researcher, or just interested in the disease - you will gain much-needed information on what it means to be a long-term sufferer and clues as to what may be helpful in regaining some function. Continue reading

SEVERE ME DAY - August 8, 2020: Desperate Plight Continues in Darkened Rooms

Myalgic Encephalomyelitis (ME) is a chronic, often severely disabling disease, that affects the autonomic nervous system, immune system, endocrine system, among others. It afflicts over one million men, women, and children in the United States alone and as many as 17 million worldwide. ME is a disease that robs individuals of their health, similar to untreated HIV. There are those that refer to ME as non-HIV AIDS - with good cause, as the disease can leave sufferers confined to a bed, with little capacity to fend for themselves. Continue reading

MEadvocacy Advisory Committee Member Selected in Remarkable Women Contest

UPDATE: 5/5/2020 The Mel Robbins show is now scheduled to air the piece about the Remarkable Women on May 6, 2020. Find Mel Robbins show on these stations: UPDATE: 3/25/2020 The Mel Robbins show scheduled to air the piece about the Remarkable Women has been postponed and will NOT air on March 26th. No new air date is scheduled. The organization indicated they hope to air this piece on the Mel Robbins show in May. UPDATE: 3/19/2020 Colleen was selected to represent her area and won the trip to New York City along with more than 100 other women. Due to COVID-19, the organizers cancelled the trip scheduled for the week of March 16 and cancelled taping on the Mel Robbins show. Instead, the videos of the women selected will be used to create a show which will air on the Mel Robbins show on March 26th. The top finalists and winner will be announced at that time. Find Mel Robbins show on these stations: ______________________________________________________________________________________________________________________________     Continue reading

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