Erica Verrillo is the president of the American ME and CFS Society, a 501(c)(3) nonprofit. May is the month for acknowledging the Millions Missing – the millions of ME/CFS patients who, through the years, have suffered from poor medical care, insufficient research into the cause and mechanisms of the disease, and a paucity of clinical trials
Myalgic encephalomyelitis (ME) is a debilitating, chronic disease that steals so much from the person. We received heart felt stories from around the globe chronicling journeys with ME. This week we touched on parenting, aging, marginalization, and careers. Today we want to share more of your stories. While not all of these stories fit into
Anthony Komaroff, MD, is the distinguished Simcox-Clifford-Higby Professor of Medicine at Harvard Medical School and Senior Physician at Brigham and Women’s Hospital in Boston. He has published over 230 research articles and two books. From 1997-2015 he was editor in chief of the Harvard Health Publications Division of Harvard Medical School, the division responsible for disseminating all of the medical school’s
In January 2019, a survey investigating the impact of graded exercise therapy (GET) and cognitive behavioural therapy (CBT) for people with ME, CFS or PVFS diagnoses in the UK was made available online. It was intended to provide up-to-date data on the impact these therapies have had on people who have been offered or received
Listen to the recording: #MEAction UK Lay Summary of the 2019 Forward ME Group CBT & GET Survey Topline findings A new patient survey of 2274 respondents has confirmed that graded exercise therapy (GET) is harming a large majority of people with ME receiving this treatment in the UK. A majority of people with ME
Listen to the article: On Thursday 24th January 2019 a historic debate took place. Over 40 MPs from across the political divide sat in the House of Commons to debate a motion on myalgic encephalomyelitis (ME), with 27 making impassioned contributions on behalf of their constituents. Together they unanimously passed this motion: “That this
Listen to the article: Exercise protocols prescribed for myalgic encephalomyelitis (ME) were powerful enough for Cherry to ignore the physiological realities of her disease. Cherry is now 100 percent bedridden. When 16-year-old Cherry from North London began the treatment prescribed for her myalgic encephalomyelitis (ME) in 2013, she was able to walk to her local
Listen to this article on #MEAction’s Soundcloud here This Thursday 24th January, myalgic encephalomyelitis (ME) will be discussed in the main chamber of the House of Commons, as Members of Parliament from all Parties debate a motion on ME put forward by Carol Monaghan MP. We want this debate to be the catalyst for substantive
UK PARLIAMENT WILL DEBATE ME IN HISTORIC HOUSE OF COMMONS DEBATE FOR IMMEDIATE RELEASE Parliament has announced that it will debate the treatment and funding of patients with myalgic encephalomyelitis (ME), a debilitating and serious, multi-systemic disease. The ME debate will take place in the Main Chamber on Thursday afternoon, 24th January. This debate follows
2018 has been a big year at #MEAction! Thank you to all of you who have put forth immense efforts to improve the lives of people with myalgic encephalomyelitis (ME). #MEAction has grown over the past year in leaps and bounds, and we cannot wait to do more. We will not end our fight until all
