Category: Politics

#MEAction Welcomes U.S. Advocacy Manager

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

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

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

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Volunteer of the Month: a Scottish Trio

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!

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

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

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Read 'Invest in ME's' Parliamentary Briefing

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” ]

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Clarification about our Senate Resolution for ME/CFS

This is a letter to the community from #MEAction, Solve ME/CFS, and MassCFIDS about our recent U.S. congressional work. Dear Friends, We want to clarify an important issue about our recent advocacy work. After two years of fierce advocacy by our community, we are thrilled that Senator Ed Markey of Massachusetts has now introduced a

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US: Watch the CFS Advisory meeting – this Wed. and Thurs.

Representatives from across federal agencies will convene for the next two days – tomorrow, June 20th and June 21st – for the bi-annual Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting. CFSAC is an important committee that provides advice and recommendations to the Secretary of Health and Human Services (HHS) on issues related to Myalgic Encephalomyelitis

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Read the new parliamentary briefing

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

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UK: Urge your MP to attend the 21st June debate on ME

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. We need to encourage as many of our MPs as possible to attend. Contacting your MP has never been easier with this new tool. Simply enter your postcode below to get started. Urge your MP

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