Awareness 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

Australian university must not ignore evidence-based science

December 6, 2016 4 Comments

Australia’s UNSW is trialling an education module treating chronic fatigue syndrome patients with graded exercise therapy and cognitive behaviour therapy (GET/CBT), despite the evidence showing these therapies have no benefit and may cause permanent harm. Sign the petition!

Jen Brea's 'Unrest' to Debut at Sundance Film Festival

November 30, 2016 1 Comment

After years of work and hundreds of hours of footage, Jen Brea’s documentary, now entitled Unrest, is ready for its debut. The film will be shown at the Sundance Resort as part of the Sundance Film Festival in January 2017; Brea’s Unrest was selected to premier as one of the Festival’s narrative documentaries. The Sundance

#MEAction US protest demands

November 30, 2016 4 Comments

These demands were originally issued for the May 25, 2016 MillionsMissing demonstrations. Minor revisions were made to the demands in November 2016 to reflect community input on the definition, the primer, the name, and the need for improvements in clinical care. You can access and download a pdf of the revised protest demands by clicking

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

Thoughts on NIH speakers from Dr. Zaher Nahle

November 15, 2016 6 Comments

It was truly unsettling to learn about the news of an invited speaker lecturing at the National Institutes of Health (NIH) on November 9, 2016. For decades, the speaker has been a staunch adversary of studying the pathophysiology of ME/CFS and refuses to acknowledge its root cause. I have written many times previously, including in an editorial in March of this year, on the aftermath of the revitalization of the Trans-NIH ME/CFS Working Group—specifically on the perils caused by what I then called “ME/CFS deniers” and “psychosomatization sympathizers.” We will not dedicate additional time to these individuals or elaborate on their misguided theories on our pages other than to make the following three points…

Watch the Bateman Horne Center Meeting Livestream

October 26, 2016 No Comments

Lucinda Bateman, MD, BHC Founder and Medical Director, is engaged in thought leadership discussions on ME/CFS and FM across the globe, traveling to several conferences in Oct. At this meeting she will will recap the information, insights, progress and promise.

#MEAction Network UK's polling results for the proposed MEGA study

October 24, 2016 3 Comments

Last week, we asked for your thoughts on the proposed MEGA study. The poll ran for 5 days and 154 of you lent your voice to the concerns raised by many. Here are the results of the vote: “The study must include severely and moderately affected patients.” 140 of 154 voted this. (90.9%) “Those researchers/advisors

#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

Category: Awareness