Politics Archives

Research: supporting advocacy orgs yields huge payoffs

November 27, 2018 6 Comments

This Giving Tuesday, I’ve got some good science to show why you should donate to #MEAction and other advocacy organizations! The study Disease Politics and Medical Research Funding: Three Ways Advocacy Shapes Policy sets out to discuss single-disease interest groups and their influence on US politics: “This article explores their effects on federal medical research priority-setting.

UK: MPs fight for a crucial parliamentary debate on ME

October 31, 2018 3 Comments

Carol Monaghan MP presented her application for a debate on ME to the Backbench Business Committee on Tuesday October 30th supported by Nicky Morgan MP, Steve Pound MP and Kelvin Hopkins MP. The application was also supported by over 30 other MPs from across the political divide at a crucial time for people with ME

#MEAction keeps up the political heat of ME in the UK Parliament

October 24, 2018 4 Comments

A productive and extremely positive meeting on the current developments on ME in the UK took place on Monday, 22nd October in the UK Parliament. Carol Monaghan, MP, and David Tuller, a Senior Fellow in Public Health in Journalism at the Center of Global Public Health, School of Public Health, University of California, met at

Join the fight against stigma and pseudoscience in New York

October 19, 2018 2 Comments

This weekend, the New York State Psychiatric Institute is hosting a conference on psychosomatic illness at Columbia University Medical Center — and they invited Per Fink to speak. If you have watched Unrest, you know that Fink’s clinic was responsible for the involuntary institutionalization of Karina Hansen, a Danish young woman with ME. [pullquote

#MEAction Welcomes U.S. Advocacy Manager

October 19, 2018 3 Comments

We at #MEAction are so excited to welcome Erin Roediger as our new U.S. Advocacy Manager! We are thrilled that with Erin’s wealth of healthcare advocacy, volunteer coordination, and electoral campaign experience, we will be able to expand our congressional outreach program in concert with our partner organizations – the Solve ME/CFS Initiative and the

Open Letter: 75 International Experts Urge Netherlands to Invest in Biomedical Research for ME

July 20, 2018 5 Comments

75 clinicians, scientists and other professionals explain to the Dutch Minister of Health what this diseas is, but also is NOT (not a pychological or psychosomatic disease), that there is no robust evidence for CBT/GET nor for the underlying hypothesis and that the only way to achieve much needed progress for patients is biomedical research

Denmark has some recommendations for ME… and they're pretty awful

July 9, 2018 23 Comments

Article written by Rebecca Hansen, Chairman of the Danish ME Association The Danish Health Authority (SST) released their new treatment recommendations for Myalgic Encephalomyelitis (ME) patients on June 18 as part of a guideline called “Physical Training as Treatment.” The chapter on ME is nothing short of medical abuse. It defines ME as fatigue and states that

Volunteer of the Month: a Scottish Trio

June 29, 2018 3 Comments

This month we want to honor the work of three women with #MEAction Scotland – Emma Shorter, Kim Gurav and Janet Sylvester – who have done an incredible job advocating for people with myalgic encephalomyelitis. The partnership began last January when Kim and Janet wanted to organise a screening of Unrest, which – long story short!

Westminster Hall debate could be a 'turning of the tide' for ME

June 21, 2018 35 Comments

Today was a turning of the tide for Myalgic Encephalomyelitis (ME) as 26 MPs attended a Westminster Hall debate on treatment and research for ME. MPs called for the immediate removal of Graded Exercise Therapy (GET) from the NICE guidelines, as patients have consistently reported being harmed from attempting to undergo this treatment. MP Ed Davey

Read 'Invest in ME's' Parliamentary Briefing

June 21, 2018 1 Comment

UK charity Invest in ME has written a briefing for the 21 June Westminster Hall debate that calls for £20 million in funding for biomedical research for five years. The briefing also provides an excellent summary of the disease and the challenges patients face accessing appropriate care. [maxbutton id=”16″ url=”http://investinme.org/Documents/Fact%20Sheets/Status%20of%20Research,%20Treatment%20and%20Perception%20of%20Myalgic%20Encephalomyelitis%202018.pdf” text=”Read the briefing” ]

Category: Politics