Awareness Archives

A Tribute to Mag Friel

April 7, 2018 4 Comments

I know hardly anything of Mag’s life before she fell ill in 1993. We were witnesses to each other’s ‘now’. There are clues though: when I sent our shoes to the #MillionsMissing protest, Mag selected a pair of dainty black Velours stiletto heels with pointed toes. Imagine her staccato gait – upright and stable! Last year, while Cannes was in the news, she wrote: “May 1991 sailed to Cannes on my partner’s yacht, hoping to complete on 5 million film deal we’d worked on for 4 years. May 2017 achieved my goal of having bed sheet changed, first time in months. Heaven. Happy ME Awareness Day. Love and eternal hope for us all. xxxxxx”

Activism Update from NY – Reaching Out to LGBTQ Community

April 6, 2018 4 Comments

Photo from The Center’s 1994 Gay Pride March on the U.N. Recently, ME activists have been reaching out to the New York LGBTQ community to educate them about ME and build allies. Terri Wilder, Gabriel San Emeterio and Kristina Osobka went to The Center in NYC, where they met with the organization’s executive director

Chronic Illness Foundation Launches in Pakistan – Call for Support

April 5, 2018 1 Comment

Looking for volunteers to launch our Neglected Chronic Illnesses Foundation – Pakistan’s Facebook page. This foundation will be the first to tackle MECFS in Pakistan and will serve as a charity and advocacy organisation – providing patients care; with a fully rounded approach.

A tribute to ‘Bob’ – Robert Courtney, ME activist, fundraiser, researcher, and friend

March 19, 2018 9 Comments

Following the tragic death of Robert Courtney, some of his friends created the tribute below, and provided the message that precedes it. We at #MEAction are pleased to reproduce both here. We, some of Bob’s many friends, have put together this tribute to him. We do not think it is appropriate to discuss the circumstances

Urgent Congressional Action! Ask your Rep. to Sign Letter for ME/CFS

March 7, 2018 12 Comments

URGENT Congressional Action! Please take this opportunity to call and email your House representative today to request they sign a letter that inserts favorable language about Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) into the House Appropriations Committee report for the FY19 budget. The deadline for your representative to sign the letter is Wednesday, March

Activism 101: Educate Medical Providers about ME

March 2, 2018 9 Comments

Most doctors, nurses and other healthcare providers belong to a medical association in order to connect to a community of their peers. These medical associations typically send out regular magazines, newsletters and emails about the latest news and topics of interest to the medical field. A great way to begin to educate an entire community

Westminster Hall Debate on the PACE trial and its effects on people with ME

February 26, 2018 9 Comments

Westminster Hall Debate on the PACE trial and its effects on people with ME: an analysis of the response from Caroline Dinenage MP, Minster of State for Care On the 20 February 2018 a debate was held in the Palace of Westminster (UK) on the PACE trial and its effects on people with ME. (See

When Medicine Fails a Child

February 11, 2018 1 Comment

Two years ago, our then 10-year old son started to complain of a stomach ache that did not resolve. Other things seemed wrong, too. I did not want to be an alarmist and waited an appropriate amount of time before calling for an appointment, thinking there would be a simple solution.

'Unrest' at the Scottish Parliament

February 7, 2018 6 Comments

The Time for Unrest event at the Scottish Parliament on 30th January was an opportunity to raise awareness of Myalgic Encephalomyelitis (ME) among Members of the Scottish Parliament (MSPs), and ask them to take action to support the 21,000 people with ME in Scotland. Attended by over 70 people, it attracted an unprecedented number of

UC Berkeley will Host Unrest Screening

February 6, 2018 1 Comment

Calling all people in the Bay Area – and beyond, You are invited to attend a screening of the Oscar-nominated documentary, Unrest, hosted by UC Berkeley’s School of Public Health on Feb. 20th. Register for the FREE event today. Please take this opportunity to invite your Congressional and State representatives to educate them about Myalgic Encephalomyelitis. You have extra

Category: Awareness