Author: Jaime S

Donate to Karina's Legal Fund

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

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

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

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#MEAction US protest demands

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

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

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

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Tell the NIH about your experience of PEM

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

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Director Collins responds to 55 Congressional Representatives' Letter of Concern

Recently, #MEAction in conjunction with other advocacy organizations and many individual advocates have also successfully lobbied Congressional members to achieve: Favorable language to ME in the FY 2016 House appropriations report; Congressional tweets of support for the #MillionsMissing Day of Action on Sept. 27, 2016, which called attention to the millions of Americans struck down by

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Attend the IACFS/ME conference this month

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

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Visit the new #MillionsMissing website!

Ever since the #MillionsMissing protests in May, volunteers have been working on a new site design for #MillionsMissing, and we are pleased to announce that it has just launched. The new site is the work of professional designers and programmers who have generously donated their time to make this happen, as well as numerous volunteers

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Naviaux's metabolism paper is about as big as you think

Robert Naviaux, at researcher at University of California, San Diego, published a landmark paper yesterday on the metabolites of patients with ME/CFS. It made news around the world. Below, an in-depth analysis of the paper’s findings and its implications. Note: some of the information below is speculative, linking Naviaux’s findings to other research.  Findings not

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Join the #MillionsMissing fundraising team!

With the help of our community’s ingenuity, strength, and indomitable spirit, #MEAction has: Spearheaded a petition to release the PACE trial data, garnering over 12,000 signatures.  This was presented in the recent FOI request to release PACE data as evidence of peaceful patient involvement Launched the worldwide protest #MillionsMissing in 12 locations to raise awareness

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