Featured actions Archives

Ramsay Award Winners and Webinar with Dr. Zaher Nahle

December 9, 2016 No Comments

Do you have questions about ME/CFS research? Two weeks from today, the last webinar of this year will be held on December 15th with Zaher Nahle, PhD, MPA, vice president for research and scientific programs at Solve ME/CFS Initiative. Send your questions about upcoming research programs to [email protected] To sign up for the webinar visit: https://attendee.gotowebinar.com/register/2743000415077341956

Donate to Karina's Legal Fund

December 7, 2016 4 Comments

Over the past several years, many of us with and without ME have looked on in horror as Karina Hansen was forcibly removed from her home and institutionalized. This was in part due to Denmark’s decision to rename myalgic encephalomyelitis “bodily distress syndrome” and classify it as a psychological illness. The Hansens’ fight to regain

Join the #MillionsMissing Art Competition Part-Two

December 3, 2016 4 Comments

We’re excited to announce the #MillionsMissing Art Competition, open to all art forms, with submissions due by Jan. 6, 2017. For all you artists itching to create your own #MillionsMissing art, now is your chance to take a crack at it and win a prize doing so. The craft competition was so popular that we

Take Lenny Jason's survey on emotional impact of having ME

November 18, 2016 3 Comments

Lenny Jason‘s recent research paper, Mortality in patients with ME and CFS, found patients are significantly at risk for earlier all-cause mortality with the top three causes of death being suicide, cardiovascular problems, and cancer. Jason is well-known for his epidemiology work, with over 80 articles on ME; he was also involved in the creation

Cast your vote today help fund epigenetic research for ME

October 25, 2016 No Comments

Action CIND is competing in the Aviva contest for $100,000 to advance ME and FM research in Canada. REGISTER at http://avivacommunityfund.org, CAST 18 VOTES TODAY at https://avivacommunityfund.org/voting/project/view/16-356, and SHARE contest information to help them.

#MillionsMissing Crafts Competition

October 24, 2016 2 Comments

#MillionsMissing Crafts Competition We want to have fun while we work for equal treatment for ME sufferers! Win prizes! Submit photos and pattern of a crochet – or knitting project with the #MillionMissing logo. ( Also with a picture of the finished product). We pick three winners receiving a prize and they will be the designers behind #Millionsmissingnorway ‘s official patterns.

Tell the NIH about your experience of PEM

October 18, 2016 6 Comments

Dr. Mark VanNess and Staci Stevens recently visited the National Institutes of Health (NIH) to present their findings on cardiopulmonary exercise testing (CPET) and the importance of the symptom of post-exertional malaise to the NIH ME/CFS Special Interest Group. Out of this conversation, Dr. Brian Walitt, lead investigator of the ME/CFS Intramural Study, extended an

Attend the IACFS/ME conference this month

October 10, 2016 No Comments

Where does rituximab fit in among the treatment options for ME/CFS? What is the US government’s research plan? How can I increase the chances my disability application will be or continue to be approved? What medications can I try for fibromyalgia now that morphine and related prescriptions are restricted? Come to our international scientific

Join us in the #isignedfive challenge!

September 23, 2016 No Comments

Want a way to raise your voice this #MillionsMissing but don’t know how? Perhaps you’re unable to attend a protest in person, or want to do a little something extra to make a difference. The stopGET petition against graded exercise therapy trials is one of the most vital actions circulating at the moment. With a

Join the NYC #MillionsMissing Protest

September 14, 2016 No Comments

The NYC #MillionsMissing Protest has a full agenda and they are excited to announce several major speakers in attendance including local NYC ME/CFS physician (and Chair of the Chronic Fatigue Syndrome Advisory Committee), Dr. Susan Levine. In addition, local physician-scientist Dr. Mady Hornig from the Columbia University Center for Infection and Immunity (and the ME/CFS Microbe Discovery Project) will also be in attendance. NYC will also have several patients and caregivers tell their personal stories. If you plan to attend and would like to share your story at the protest, please contact them. Finally, as opposed to the shoe display used at other locations, NYC will be doing a unique display using balloons and posters.

Category: Featured actions