COVID-19 and Long haul COVID Resources

×

Category Tag: awareness

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 ...

Celebrating Postcards to Doctors: Final Report

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 by our community's drive to fight for change. Check out our infographic ...

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 ...

Sept & Oct — Research Roundup

The end of September was a whirlwind! Between the CDC's website work, the CDC's awarding of a sole contract, the planning sessions for the NIH meeting, and the Stanford symposium, there wasn't much time to devote to breaking down the science.  If you'd like to see a quick run-down of ...

Trifecta for ME awareness in Knoxville, Tennessee

Trifecta in Knoxville, Tennessee In an example of Knoxville leading the way for Tennessee, Mayor Madeline Rogero and the Knoxville City Council have provided an ME/CFS Proclamation and Resolution in honor of May 12th, International ME/CFS Awareness Day. Supporting the global movement of lighting bridges and buildings in the ME ...

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 ...

Julie Rehmeyer’s memoir is out. Purchase her book today!

“I read an early version of Through the Shadowlands while I was driving around the country, tent in my rental car, terrified that something inexplicable was wrong with me, convinced that I was losing my mind. Julie Rehmeyer’s book showed me that I wasn’t ...

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 ...

#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 ...

Contact your local journalist about #BedFest

Invite a journalist to cover the story of #BedFest in which artists with Myalgic Encephalomyelitis from all over the world have come together - many of them bed or homebound - to express themselves and showcase their music, art and poetry. Share the #BedFest website with your journalist - a living gallery and concert hall ...