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Category Archives: Advocacy

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 ...

Learn More About the UK Parliamentary Briefing

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A key briefing to help parliamentarians understand the issues facing people affected by M.E. has been co-authored by #MEAction UK, the ME Association, Action for M.E., and the ME Trust. Read the Parliamentary briefing.  Our collaboration on this was prompted by a discussion with the UK team responsible for the impact ...

Make yourself Heard before U.S. Health Officials – Submit your Comment to CFSAC by June 13

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You showed up for #MillionsMissing, now is the time to show up before our federal agencies to demand that they take urgent and strategic action for people with Myalgic Encephalomyelitis. The Chronic Fatigue Syndrome Advisory Committee (CFSAC) will hold its bi-annual meeting on June 20th and 21st, and we need ...

MPs Fight for House of Commons debate on ME in UK

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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 ...

Victory for ME Disability Claim – U.S. Court Upholds Plaintiff’s Lawsuit After Being Denied Disability

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Former Washington Post science reporter, Brian Vastag, won a federal lawsuit against Prudential Insurance after the insurance company dropped his short-term disability benefits and denied his bid for long-term ones. Vastag’s lawyers said that the ruling should make it harder for insurers to deny benefits to similar cases in the future ...

“Listened to but were we heard?” The NICE guidelines scoping workshop

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On 25th May 2018, NICE held an engagement workshop with stakeholders, looking at the draft scope for the new guideline on ME/CFS. This is the second workshop held by NICE in which stakeholders were given a chance to influence the development of the new guidelines. The draft scope will be ...

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

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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 ...

The NIH Plan for ME is Dismal

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Occupy M.E. describes the NIH's current plan to address the crisis of Myalgic Encephalomyelitis as "do a little and wait." Blogger Jennie Spotila describes the agency's plan, which was found buried in the NIH 2019 budget request sent to Congress, as follows: NIH is going to wait for the new Collaborative ...