May 12, 2024 International Awareness Day - Still Battling US Health Agencies

We mark this date remembering those who have advocated for myalgic encephalomyelitis and other marginalized diseases.  For background on May 12 as Complex Immunological & Neurological Diseases (CIND) day and Thomas Hennessy, Jr’s legacy, see our previous guest blog from here: While MEadvocacy is mostly in a holding pattern, we still follow what is happening in the US and wanted to share how the work of the MEadvocacy volunteers continues to be useful. Continue reading

May 12: Ongoing Fight to End HHS Crime & Stop Evaporation of ME

MAY 2023 STATUS REPORT Another May 12, International Day of Awareness, is here.  For many of us, this marks decades of living with myalgic encephalomyelitis (ME). ME advocates have been raising awareness about the disease as well as the uphill fight against Health and Human Services (HHS) who have attempted to disappear ME for decades.  In Amy McLaughlin’s guest blog The Forever Flu, Amy describes an experience many of us can relate to with our own journey of contracting and living with myalgic encephalomyelitis.   The history of May 12 can be found in last year’s blog 10 Year Anniversary and our 2018 blog The 26th ME Awareness Day: Still Fighting Unscientific Claims. While MEadvocacy has been mostly inactive, our volunteers have continued to advocate in various ways.  Colleen Steckel, wrote about how ICD codes are being used to bury ME.  To follow news in the ME community we recommend ME Global Chronicle. Their most recent index to articles can be found HERE. Continue reading

The Forever Flu

The painting is by Francisco Goya, a self-portrait with the doctor who nursed him through a serious, life-threatening illness. The artist's inscription says 'Goya, in gratitude to his friend Arrieta: for the compassion and care with which he saved his life during the acute and dangerous illness he suffered towards the end of the year 1819 in his seventy-third year.' This is what so many of us with ME have wished for -- compassion and care.   Guest blog by Amy McLaughlin   One of the biggest casualties for me in a very long illness has been a loss of faith, not in any god, but in the integrity of our health care system, and in language itself, in the possibility of using words to successfully communicate something vital to others. Continue reading

May Ten Year Anniversary

May 12, 2022, marks the 30th anniversary of International Awareness Day for Complex Immunological & Neurological Diseases (CIND), and the 10th anniversary of “If a cause and cure are to be found for ME, FM, MCS, GWI, Chronic Lyme Disease and other related C.I.N.D. illnesses in the near future, government and medicine must be made fully aware of their scope and impact. Despite the efforts of a number of dedicated groups and individuals, there are still vast pockets of ignorance and misunderstanding. To this day, many patients run directly into a medical establishment that, in general, knows very little about these serious threats to human health. It is therefore crucial that all those affected by the illnesses make their voices heard, especially on May 12th of each year.” Continue reading

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

  UPDATE:  Rotary decided it would NOT adopt this proposal. 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