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Category Archives: Politics

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

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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 ...

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

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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 ...

Volunteer of the Month: a Scottish Trio

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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 ...

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

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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 ...

Read ‘Invest in ME’s’ Parliamentary Briefing

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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.     Here is ...

Clarification about our Senate Resolution for ME/CFS

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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 ...

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

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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 ...

Read the new parliamentary briefing

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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 ...

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

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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 ...

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

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#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 ...