Photo of the Caged Bird who writes about her experiences living with severe ME here. Today, August 8th, marks Severe Myalgic Encephalomyelitis (ME) Day of Understanding and Remembrance. It is a day to remember and honor the 25 percent of ME patients who are housebound or bedbound, and those who have passed away from ME.
The UC San Diego Smart WheelChair team is asking ME patients to fill out a short google questioner about how ME impacts their mobility and how they can best design a wheelchair accessory that would support your independence. The team of undergraduate engineering students are working to design an affordable, open source, voice activated accessory
The women’s rights community is beginning to pay attention to Myalgic Encephalomyelitis (ME) as one of many diseases in which sexism has played a role in the disbelief, misdiagnosing and mistreatment of patients. (ME affects men, women and children but 75 percent are women.) The National Organization for Women (NOW) held a panel discussion about
An anonymous testimony given before the Chronic Fatigue Syndrome Advisory Committee (CFSAC), which met last week for its bi-annual meeting to discuss recommendations to make to the Secretary of Health and Human Services (HHS) on issues related to Myalgic Encephalomyelitis and chronic fatigue syndrome. *Note, an anonymous person gave this testimony. #MEAction has published it but did not
The Center for Solutions for ME/CFS is seeking applications for the Community Advisory Committee. The deadline is Monday, July 9. Apply here: CAC application, available in Google Forms. The Center for Solutions for ME/CFS (CfS for ME/CFS) is a multi-institutional, inter-disciplinary research center dedicated to understanding the biology of ME/CFS, and developing diagnostic tests and methods for
Dr. Mark Davis, Director of the Stanford Institute for Immunity, Transplantation, and Infection, talks about his work with T-cells to understand their role in ME/CFS and to determine if ME/CFS is an autoimmune disease. The Open Medicine Foundation (OMF) is funding the work of Dr. Davis into ME/CFS.
#MEAction Scotland appeared before the Scottish Parliament Petitions Committee on June 7th to give evidence on its petition to review treatment of ME patients in Scotland. Watch the hearing: Not all petitioners are called before the Parliament’s Petitions Committee, so the fact that #MEAction Scotland has been summoned is very encouraging. The petition has received 7,000 signatures, and
Former Washington Post science reporter, Brian Vastag, won a federal lawsuit against Prudential Insurance after the insurance company dropped his short-term disability benefits and denied his bid for long-term ones.
Vastag’s lawyers said that the ruling should make it harder for insurers to deny benefits to similar cases in the future.
MP Carol Monaghan (Glasgow North West) had asked the UK Secretary of State for Health and Social Care how much it plans to allocate to biomedical research for Myalgic Encephalomyelitis in the current financial year? In quotations below is the response from the Minister of State at the Department of Health and Social Care, Caroline Dinenage. Her response only references past spending,
Read Volume One and Volume Two. Day #5 cont’d. My partner and I hit a point of exhaustion. From him having the flu, my turn in symptoms and the lack of wheelchair friendly locations, creating your own fun on a holiday is an easy concept when your cup is full but both our cups had
