#MEAction Puts ME into the Spotlight

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Since the coronavirus pandemic hit, #MEAction has pitched news stories and worked with major news outlets to sound the alarm that COVID-19 patients are at risk of developing myalgic encephalomyelitis (ME) and other chronic illnesses. In the past month, #MEAction has worked to tell this story in The Washington Post, The Atlantic and Bustle!   

As the world grapples with more and more COVID-19 patients who are not recovering, #MEAction is working to bring knowledge about ME to the world so that the flood of new patients developing ME will find timely diagnosis, treatments and care. 

Now more than ever is the time for our government to invest heavily in research and medical education to better understand post-viral diseases like ME. Please support our advocacy work today!

Washington Post Publishes Perspective Piece Co-Written by #MEAction Co-Founder 

#MEAction Co-founder Beth Mazur (right) and former Washington Post reporter Brian Vastag (left)

#MEAction Co-founder Beth Mazur and former reporter Brian Vastag recently published a perspective in The Washington Post about the potential for COVID-19 to lead to ME and other chronic illnesses. 

The article was on the Washington Post homepage for more than 24 hours, a sign of high readership, according to the editor that worked on the piece. In addition, it ran on the front page of the weekly print Health and Science section, with some 300,000 copies in circulation. It was also recirculated in newspapers in Seattle, San Francisco, Maine and New Mexico. 

In the reported piece, the authors make clear that the symptoms many post-COVID-19 patients are experiencing aren’t a new phenomenon, and that governments must invest in ME research.

“Given the historical neglect of ME/CFS — very few medical students even learn about it — many physicians and researchers who follow covid-19 patients may think they’re discovering a new phenomenon in the patients who are slow to recover,” write Beth and Brian. “Instead, they’ll be rediscovering a common illness that’s been known, and neglected and afflicting many people — for decades.” 

If you don’t have a subscription, read the Washington Post article here.

The Atlantic Publishes Article about COVID-19 Patients, Interviews #MEAction Co-Founder, Jennifer Brea

A few days ago, The Atlantic published a compassionate and deeply thoughtful piece about COVID-19 patients who are not recovering from the viral infection, called “COVID-19 Can Last for Several Months” by the science writer, Ed Yong. #MEAction co-founder, Jennifer Brea, was interviewed for the article, and provided background information about the viral onset of ME.

“ME/CFS is typically diagnosed when symptoms persist for six months or more, and the new coronavirus has barely been infecting humans for that long. Still, many of the long-haulers’ symptoms “sound exactly like those that patients in our community experience,” says Jennifer Brea, the executive director of the advocacy group #MEAction.

In the article, Yong profiles 9 post-COVID patients who are struggling with ongoing symptoms months after first getting infected, including post-exertional malaise (crashing after exertion), fatigue and cognitive issues. Most of the patients Young interviews were never admitted to the ICU or put on a ventilator, and were considered “mild” cases. Yong grapples with the coming wave of ME/CFS and how the pandemic could have broader, longer-lasting impacts than we ever imagined.

#MEAction Press Release Leads to Bustle Article on COVID-19 and ME 

In early May, #MEAction sent out a press release about how researchers are expecting COVID-19 to lead to a surge in cases of ME across the world. Bustle picked up the story and published the article, “ME/CFS Diagnoses Could Rise After Coronavirus, Researchers Suggest.” The journalist profiled Jen’s story of getting a viral infection that developed into ME, and how dismissal and ignorance from doctors delayed her diagnosis by years. 

“The research community is hoping that the coronavirus pandemic could wake people up to the long-term effects of ME,” writes Bustle journalist, JR Thorpe. 

#MEAction Board Member Involved in Supporting COVID-19 Patients who are not Recovering 

#MEAction board member, JD Davids, is a member of the volunteer research team for Body Politic. He is an active ally for individuals with COVID-19 who are not recovering, and he also had a non-prolonged, probably COVID-19 in March.

Keep Our Work Going!  

We must keep telling the story of ME to the world so that our governments finally take the necessary steps to provide research and care for people with this horrifying disease. Please support our work today! 

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2 thoughts on “#MEAction Puts ME into the Spotlight”

  1. Karen Gormley

    Thank you for the fantastic work all at MEAction have done so far.

    I have ME and I’m currently writing a book about Covid 19. ( all whilst lying in bed on my mobile phone, so it’s taking a while)

    I will be talking about the PACE trial and the similarities with post-Covid illness, and would very much like to include your article, with credit, about the PACE trial debate in the house of commons. You have described the issues brilliantly and in a way that’s easy to understand.

    Would you mind if I put your article, organization and name in my book, please? If I can eventually manage to get it published it would be a perfect way to get the important info to people who are unfamiliar with our fight.

    Thank you
    Karen Gormley

    1. Hi Karen,

      Thank you for your comment. I would need to understand more about your book. Do you have an introductionary chapter I could review to understand what you are writing?

      Please email me at: [email protected]

      Thank you,
      Adriane

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