Tag: activism

NICE announces roundtable event to ensure implementation of ME/CFS guideline

NICE announced today that it will hold a roundtable in September as the next step in the publication of the ME/CFS guideline. The roundtable will include representatives from patient organisations and charities, relevant professional societies, NHS England and NHS Improvement, NICE and the guideline committee. It aims to, “better understand the issues raised and determine

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Sign Our Petition: Publish the NICE ME/CFS Guideline Now.

We call on the National Institute for Health and Care Excellence (NICE) to publish the finalised ME/CFS guideline in its current form.  Sign the petition On 18th August 2021, NICE were due to publish their newly developed ME/CFS guideline. It would have transformed the care people with ME receive in the UK and abroad. But

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Host a Postcards to Doctors party this holiday season!

Host a Postcards to Doctors party this holiday season! And announcing: #MEAction’s first Pinterest boards! Together, the #MEAction community has made the Postcards to Doctors initiative an incredible success: there have been approximately 5,500 requests for postcards to doctors across 43 states! We are so thankful to see people across the country step up to

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Get involved: support science and advocacy this April

April is going to be an incredibly exciting month for advocacy and for research into ME! The NIH is hosting a conference on ME in early April along with a Young Investigators Workshop specifically geared towards early-career investigators with interest in ME.  Concurrently, there will be a Congressional lobbying push hosted by #MEAction and SMCI

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#MEAction Responds to NIH

As many of you know, #MEAction activists for myalgic encephalomyelitis (ME) met with the director of the National Institutes of Health (NIH), Dr. Francis Collins, on December 7 to discuss accelerating research in order to more rapidly provide diagnostics and treatments to people with ME. To read about the details of the meeting, click here.

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Join the fight against stigma and pseudoscience in New York

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

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Meet with your MP about ME – Our Toolkit shows you how!

Advocates at #MEAction UK are working hard to engage Members of Parliament in the fight for appropriate clinical care and investment in biomedical research for ME. Gaining MPs support in lobbying for change is vital to our success. So whether you are a person with ME, their carer, friend, family member or ally, we are

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Voices from Sacramento: Janet Dafoe and Ashley Haugen

Some of you may know Dr. Janet Dafoe and her daughter Ashley Haugen through their tireless advocacy work for ME.  Dr. Dafoe’s son and Ashley’s brother, Whitney Dafoe, has severe ME, and is the impetus behind their efforts to raise funding, raise awareness, and raise hell. These statements were read at the Sacramento California rally on June 2, 2017.

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CA Senate will Vote on Resolution for ME/CFS Thursday – Call your Senator!

California – A resolution to proclaim May as Myalgic Encephalomyelitis / Chronic Fatigue Syndrome Awareness (ME/CFS) Month will go before the California Senate this Thursday. Now, is a great time to educate your California Senator about ME/CFS, and let them know that you are a constituent who cares about this cause. Even though the resolution (which

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#MillionsMissing Will Take to the Streets on May 12th – Join Them!

The #MillionsMissing are taking to the streets in 17 cities across the world on Friday, May 12th to once again demand change for people with Myalgic Encephalomyelitis (ME). Five cities in the UK are hosting #MillionsMissing rallies – with London taking a stance before the department of health for the third time. Norway will demonstrate

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