Jenny Horner is another stalwart advocate in the myalgic encephalomyelitis (ME) community who inspires us to dig deeper and reach higher. She first got involved with #MEAction UK in an effort to protect children from the effects of being pushed to exercise, which has shown to cause harm in people with ME. Most recently, she
MINUTES: Friends, Family and Allies for ME (FFAME) meeting: Saturday, December 1 Primary Discussion Topic: Advocating for ME while maintaining privacy for ourselves or loved ones For some of us, privacy isn’t an issue, as the pwME (person with myalgic encephalomyelitis) may be happy with any advocacy we can do. Some pwME do not want
Last month, Mary Gelpi sent a petition with more than 50,000 signatures to the director of the U.S. National Institutes of Health (NIH), Francis Collins, asking the NIH to increase funding for ME/CFS to 100 million annually. Mary’s friend, Matt Tyler, who sent a letter accompanying the petition, received the response below from Walter J. Koroshetz,
Across the globe, we are pursuing creative projects across all mediums to tell the world about myalgic encephalomyelitis (ME). In our fall roundup, you’ll be inspired reading about the work and accomplishments of some of our community heroes. Support the #MEAction community by donating to our #GivingTuesday campaign this Tuesday, Nov. 27 where Facebook will match your
Suomalaiset ME/CFS-potilaat tarvitsevat apuasi. Allekirjoitathan vetoomuksen! [maxbutton id=”21″ url=”https://my.meaction.net/petitions/me-cfs-is-not-a-functional-disorder-we-call-for-appropriate-treatment” text=”Allekirjoita vetoomus!” ] Editorilta: Klikkaa tätä lukeaksesi englanninkielinen versio artikkelista. Editor’s note: Click here to read the English translation of this article. Kaksitoista vuotta sitten syntyi poika, nuorimmaiseni. Iloinen hymyhuuli nauratti aina muita vitseillään ja oli kaikessa innolla mukana. Koulu oli kivaa, samoin urheilu ja kavereiden kanssa leikkiminen.
The #MEAction community has dug in deep this fall to undertake the incredibly important work – and heavy lifting – of ensuring that our health agencies create guidelines that will improve the lives of people with ME. We are holding our government officials accountable for their decisions that affect our daily lives. We continue to
People with ME/CFS in Finland need your help. Please sign their petition! [maxbutton id=”21″ url=”https://my.meaction.net/petitions/me-cfs-is-not-a-functional-disorder-we-call-for-appropriate-treatment” text=”Sign the petition” ] Editor’s note: Click here to read the Finnish translation of this article. Twelve years ago a boy was born, my youngest. A happy, delightful child, always making others laugh and enthusiastically participating in everything. He liked
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 what’s been going on lately
On Thursday, 8th November, the Scottish Parliament Public Petitions Committee met to review evidence submitted in support of various petitions, including #MEAction’s petition: PE01690 Review Treatment of People with ME in Scotland. Submitted by Emma Shorter, on behalf of #MEAction Scotland, in June this year, the petition called on the Scottish Parliament to urge the
There are a lot of moving pieces to keep track of as we push for our U.S. federal agencies to provide fair and adequate treatment to people with myalgic encephalomyelitis (ME). Together, our community continues to take action to fight for our lives, and we’re seeing the fruits of that labor. At the NIH, we’ve
