Tag: advocacy

Photo of staff members smiling at camera on a zoom call.

#MEAction’s Summer Work Heats Up

Halfway through summer, we have so much to report about our immense, day-to-day work advocating for M.E., for you, and for each other.  On the medical front, our ongoing, grant-funded project with Mayo Clinic Rochester continues to transform medical education at Mayo. Together, we have updated the ME/CFS homepage, written a Concise Clinical Review article that will

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Image features newspappers folder up and stacked together vertically. There is a red box in the center that has the words, Why We Keep Telling the Story of ME to the Press in white and the #MEAction logo in the righhand corner of the box.

Why We Keep Telling the Story of ME to the Press

Our press work continues to drum a strong beat as we tell the story of ME everyday to the media. We will continue to fight for our community’s decades of expertise living with, treating and researching ME to be heard, and integrated into our government’s Long COVID response. We refused to be erased from the

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Screenshot showing 4 of the panelists on a Zoom screen with a red paly button in the middle and the MEACtion logo in the corner

Telebriefing was a success!

We were thrilled at the outcome of the #MEAction press briefing last week where we invited a panel of experts to discuss the intersection between long COVID and myalgic encephalomyelitis (ME) to the media. The panelists made it crystal clear that a subset of long haulers are meeting the criteria for ME, and that it

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Post-COVID research & clinical care must include ME/CFS

People with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) have been concerned since the start of the coronavirus pandemic that a subset of COVID-19 patients will go on to develop ME/CFS. Unfortunately, we are already hearing from many COVID-19 survivors around the world that they are continuing to experience debilitating symptoms for many months, even after “mild”

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Citizen science highlights non-recovery in COVID-19 patients

Recently, #MEAction received what may be the first, participant-led analysis of COVID-19, entitled What Does COVID-19 Recovery Actually Look Like? An Analysis of the Prolonged COVID-19 Symptoms Survey by Patient-Led Research Team. The Body Politic COVID-19 Support Group surveyed over 600 participants who had experienced/were experiencing COVID-19 symptoms for at least two weeks, revealing insights

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Celebrating Postcards to Doctors: Final Report

This article references the 2019 Postcards to Doctors initiative. Find the page for Postcards to Doctors 2020 here. We’re incredibly pleased to announce that we not only met but exceeded our initial goal of sending 6,000 postcards out into the world!  And we could not have done it without you.  As always, I am bowled over

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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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Postcards to Doctors Featured Artist: Lia Pas

#MEAction’s Postcards to Doctors initiative has continued to be an incredible success! Thanks to the hard work of the #MEAction community we have sent postcards to nearly 6,000 clinicians across the United States. We could not have done this without the invaluable contributions from the artists who designed our postcards.   #MEAction would like to

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Postcards to Doctors returns!

Great news!  Postcards to Doctors has relaunched as of today, October 1!  You can now request new postcards and addresses here.  If you requested postcards or addresses during the month of September, we’ve resumed generating addresses and sending postcards as of today, and you should receive yours within the next few weeks.  Want to learn

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