#MEAction, Author at #MEAction Network

Petition: Keep psychiatry out of NIH study on ME/CFS

March 23, 2016 No Comments

This is the first study on ME/CFS conducted by NIH in two decades. One million patients suffer from this disease, too long neglected by both CDC and NIH. It is critical that the Principle Investigators recognize existing biomedical research on the disease, as well as the results of recently commissioned studies by the Institute of Medicine for DHHS and the P2P (Pathways to Prevention) program at NIH.

Why is MEpedia so crucial?

March 22, 2016 2 Comments

MEpedia is a crucial tool for advocates, researchers, doctors, policy makers, and even the general public, that will allow them to find all current information on myalgic encephalomyelitis in one place.

NIH to patients, “We are your partners”

March 21, 2016 9 Comments

The National Institutes of Health’s (NIH’s) ‘New Deal’ for ME/CFS, particularly the intramural study, has had a very mixed reaction from the patient community. Update: NIH gives update on consulting patients, and says RFAs will happen On March 30 NIH revised it’s response to the CFSAC recommendations saying its new plans include RFAs (plural) and

Clarification on NINDS role in ME/CFS Research

March 19, 2016 No Comments

After the March 8th telebriefing with the NIH, many advocates in the ME community still came away with questions. Billie Moore, NJME/CFSA Advocacy Chair, and member of the USAWGaAnd CDC’s TDW Workgroup, was one of them. Though representatives of the NIH spoke at great length about the big picture of the new ME/CFS efforts that the organization is

Help Disabled Bolivian Activists Cross Andes in Wheelchairs

March 16, 2016 No Comments

#MEAction, in collaboration with the Association of People with Disability (APD) in Bolivia, have launched a campaign to raise funds for the brave individuals that are risking their lives to demand equality from their government. Our goal: raise $10,000 by Saturday, March 19th It all started 50 days ago at the main square in

Please Donate to Help Liisa Lugus Find Housing and Long Term Care

March 16, 2016 5 Comments

Liisa Lugus has been bedbound with extreme myalgic encephalomyelitis for 13 years and is losing her current home. She has nowhere to go and needs our help: https://www.tilt.com/tilts/liisa-lugus-urgent-housing-and-long-term-care-fund https://www.facebook.com/friendsofliisalugus/info/?tab=page_info

#MEAction meets with Senate staffers

March 16, 2016 No Comments

This week #MEAction, in collaboration with Solve ME/CFS and USAWG, conducted advocacy efforts with members of Congress to make two key requests for the benefit of greater ME/CFS medical research funding. Senators were asked to support a letter to NIH Director Francis Collins requesting that an equitable share of the $2 billion increase in fiscal

James Coyne Stormont talk on YouTube: PACE "outrageously bad"

March 15, 2016 No Comments

Professor James Coyne’s February 9 Belfast talk, “The Scandal of the £5m PACE Trial”, is now available on YouTube. The talk, given at Stormont, the home of the Northern Ireland Assembly, was delivered to a 40-strong audience of Members of the Legislative Assembly (MLAs), doctors, researchers and key health decision-makers. Professor Coyne spoke about how

Announcement: May 18th Protest in Washington DC has now been rescheduled for May 25th!

March 14, 2016 5 Comments

#MEAction is excited to announce its first protest in Washington DC! Now rescheduled for May 25, 2016! Please join us May 25th for a protest outside of the Health and Human Services building in Washington DC. Our goal is to raise the visibility of this illness and the people living with it. Because of the nature

24 organisations in 14 countries tell QMUL: release PACE data

March 13, 2016 6 Comments

All 13 organisations in the European ME Alliance (EMEA) have answered ME/CFS patient Clark Ellis’s call to request Queen Mary University of London (QMUL) to release data from the PACE trial. QMUL are due to appeal the UK Information Commissioner’s decision that they should release the data to a patient who requested it, at a

Author: #MEAction