Awareness Archives

NIH Director: Our Judge and Jury, Prison Guard and Executioner

June 26, 2018 No Comments

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

Mother Shares Heartbreaking Testimony about Sons with Severe ME

June 25, 2018 15 Comments

This mother has participated in CFSAC meetings more than 20 times in an effort to get the Health and Human Services to take appropriate action to address this health crisis. Her two sons have suffered from severe Myalgic Encephalomyelitis for more than a decade. The photo was taken of her sons one month and one day before ME devastated

PBS Audience Award: Vote for Unrest

June 18, 2018 11 Comments

We are thrilled to announce that Unrest is in the running for the 2017-18 Independent Lens Audience Award! It was an honor to have Unrest premiere on PBS | Independent Lens this past January and it would mean the world to us if we could count on your support for this award– after all, this

Read the new parliamentary briefing

June 14, 2018 8 Comments

Next Thursday, Parliament will hold a 3-hour Westminster Hall debate on Myalgic Encephalomyelitis treatment and research in a monumental victory for the ME community. In preparation for the debate, #MEAction UK volunteers prepared a parliamentary briefing along with three other charities – ME Association, Action for M.E., and the ME Trust. (Learn more about how

#MEAction Scotland Speaks at Scottish Parliament Petitions Committee – Watch the Video

June 7, 2018 No Comments

#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

UK MPS Secure Westminster Hall Debate on ME

June 6, 2018 6 Comments

Mark your calendars! A 3-hour Westminster Hall debate on Myalgic Encephalomyelitis (ME) treatment and research has been scheduled for Thursday, 21st June, 1:30-4:30 p.m. The fight for a larger debate on ME has had cross party support with Carol Monaghan MP securing the debate, along with the support of five other MPs. #MEAction UK and

MPs Fight for House of Commons debate on ME in UK

June 5, 2018 No Comments

MPs across the parties in the U.K. came together today to argue the case for scheduling a debate about Myalgic Encephalomyelitis (ME) in the main chamber of the House of Commons. Watch the video below. Carol Monaghan MP joined five other MPs on June 5th to argue the merits of holding a debate on ME

Scottish Action – Urge your MSP to Support Petition for ME

June 1, 2018 12 Comments

by Kim Gurav and Susan Cole #MEAction Scotland volunteers have been called before the Scottish Parliament’s Petitions Committee on Thursday, 7th June to give evidence on their petition to review treatment of ME patients in Scotland. The petition has received 7,000 signatures, and calls on the Scottish Government to invest in biomedical research into ME,

How Much Does the UK Dept. of Health Spend on ME?

May 31, 2018 No Comments

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,

Victory for #MEAction NY Activists: State Publishes Webpage about ME

May 25, 2018 1 Comment

The New York State Department of Health has recently established a new webpage about Myalgic Encephalomyelitis (ME) on its website, thanks to the hard work of #MEAction activists. New York is one of only three states in the U.S. that has a page on ME. (Illinois and Wisconsin have some information about chronic fatigue syndrome.)

Category: Awareness