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Category Archives: Advocacy

People travelled from all over Scotland to attend #MillionsMissing Glasgow

Hundreds gather for #MillionsMissing Glasgow

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#MillionsMissing Glasgow on 12 May, 2019, was a huge success, and took place in glorious sunshine which is fairly unusual for this Scottish city! A crowd of around 400, many of whom had travelled from across Scotland, heard people with myalgic encephalomyelitis (ME) speak about their experience of the illness ...

Thank The Senate Resolution Co-Sponsors!

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Thank The Senate Resolution Co-Sponsors! This past weekend we celebrated the passing of the bipartisan Senate Resolution, S.Res. 225, in honor of International ME/CFS Awareness Day. Now is the time to thank the lead sponsors, Senator Markey and Collins, plus the other 13 Senators who co-sponsored this historic resolution!!   Two Ways ...

Read #MEAction’s Request for Information response to the NIH

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The story so far NINDS, the National Institute for Neurological Disorder and Stroke at the NIH has solicited an RFI, or a Request for Information, from the ME community on how to advance research for myalgic encephalomyelitis.   With only a few weeks’ turn-around, the #MEAction NIH working group produced a compelling response based on ...

We are building a movement at #MEAction UK. Join us!

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#MillionsMissing - organised by #MEAction - has been such a successful campaign this year, and we thank everyone in the ME community for your part in this. At #MEAction UK we are building a movement. We’ve grown #MillionsMissing, a campaign for health equality for ME, from a single protest in London ...

South Carolina Raises Awareness about ME

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My name is Robert Jacobs, MD and I am a retired Physician and caregiver for my wife who has had Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) for more than 9 years. Despite the historical, tourism and quality-of-life allure of this beautiful state, we discovered a paucity of medical care available to patients with ME/CFS, ...

Urgent – Contact Your Senators Now to Co-sponsor the ME/CFS Awareness Day Resolution

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***UPDATE: THIS ACTION IS NOW OVER***   Please contact your SENATORS and urge them to co-sponsor a ME/CFS Awareness Day Resolution NOW! Although the original co-sponsors would like to receive sign-ons as soon as possible and ideally by COB Wed, May 8th, they’re willing to accept co-sponsors up until the passage of the bill, ...

What A Day…

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What A Day… ME Advocacy Day 2019 was a huge success! #MEAction and Solve ME/CFS Initiative were very excited to partner for this year’s Advocacy Day and we were blown away by everyone’s response and involvement. With over 200+ people registered to attend in person and even more of you taking action ...
Calculator on top of graph paper with pen to the right

CBT and GET survey results published by Forward-ME Group

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In January 2019, a survey investigating the impact of graded exercise therapy (GET) and cognitive behavioural therapy (CBT) for people with ME, CFS or PVFS diagnoses in the UK was made available online. It was intended to provide up-to-date data on the impact these therapies have had on people who ...

GET and CBT are not safe for ME – summary of survey results

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Listen to the recording:  #MEAction UK Lay Summary of the 2019 Forward ME Group CBT & GET Survey Topline findings A new patient survey of 2274 respondents has confirmed that graded exercise therapy (GET) is harming a large majority of people with ME receiving this treatment in the UK. A majority of people ...

Advocacy Week Local Actions

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***UPDATE: THIS ACTION IS NOW OVER***   ADVOCACY WEEK LOCAL ACTIONS As many of you know, Advocacy day is April 3rd in DC. Activists will be traveling from around the United States to have meetings with their elected officials to demand recognition and action for people with ME. No matter if you are ...