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Three actions you can take now to advance the fight for health equality:

  1. Contact your representatives:
    USA: We are working on some important actions to further support for ME/CFS in the Senate and in the House, but we need your help to reach out to your representatives to let them know this action is important to their constituents. Take these actions now: 

  2. Tell the FDA not to touch your compounded drugs. The FDA is reviewing substances used in compounded treatments to determine if they are clinically necessary. We need to ensure that the FDA hears from people with myalgic encephalomyelitis about substances that are helpful to us. Read more.
  3. Donate: to support #MEAction’s movement-building and advocacy work.

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Calling all Family, Friends and Allies – Join the Movement to Support People with ME

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You may have watched your friend or relative struggle with myalgic encephalomyelitis (ME) unsure of what is happening or how you can help. #MEAction is supporting a new project called FFAME - Family, Friends and Allies for ME - to build a network of support for family, friends, caregivers and ...

Will the FDA Stand in the Way of Your ME Treatment? Take Action now!

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Suppose there was a substance that could help you, but before you learned about it, or you could find a doctor to prescribe it, the FDA banned it from the market, even though patients have successfully used it for decades. Or suppose there was a treatment that had helped your ...

Do you use a wheelchair? A team of engineers needs your input.

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The UC San Diego Smart WheelChair team is asking ME patients to fill out a short google questioner about how ME impacts their mobility and how they can best design a wheelchair accessory that would support your independence.  The team of undergraduate engineering students are working to design an affordable, open ...

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 ...

Two things to do ahead of Thursday’s Parliament debate

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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 (You'll be able to watch the live stream here). We want to encourage as many of our MPs as possible to attend and use this as an opportunity to raise ...

PBS Audience Award: Vote for Unrest

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We are thrilled to announce that Unrest is in the running for the 2017-18 Independent Lens Audience Award! It was an honor to have Unrest premiere on PBS | Independent Lens this past January and it would mean the world to us if we could count on your support for ...

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 ...

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 ...

Scottish Action – Urge your MSP to Support Petition for ME

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by Kim Gurav and Susan Cole #MEAction Scotland volunteers have been called before the Scottish Parliament’s Petitions Committee on Thursday, 7th June to give evidence on their petition to review treatment of ME patients in Scotland. The petition has received 7,000 signatures, and calls on the Scottish Government to invest in ...

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 ...

Calling all Patients: Fill Out the Research Survey about PEM

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DePaul University is asking the patient population to fill out a survey to better understand the effects of post-exertional malaise (PEM) in people with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome. The patient community aided in the development of this questionnaire to more accurately define and measure abnormal responses to physical and/or ...

UK Call to Action: Ask Your MP To Sign EDM 1247!

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  If you are in the UK, please email your MP asking them to sign Early Day Motion 1247. What is an EDM? Early day motions (EDMs) are motions submitted for debate in the House of Commons for which no day has been fixed. As there is no specific time allocated to EDMs very ...