Author: Adriane Tillman

Building Allies for M.E. at Women’s Rights Conference

The women’s rights community is beginning to pay attention to Myalgic Encephalomyelitis (ME) as one of many diseases in which sexism has played a role in the disbelief, misdiagnosing and mistreatment of patients. (ME affects men, women and children but 75 percent are women.)   The National Organization for Women (NOW) held a panel discussion about

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NIH Director: Our Judge and Jury, Prison Guard and Executioner

An anonymous testimony given before the Chronic Fatigue Syndrome Advisory Committee (CFSAC), which met last week for its bi-annual meeting to discuss recommendations to make to the Secretary of Health and Human Services (HHS) on issues related to Myalgic Encephalomyelitis and chronic fatigue syndrome.  *Note, an anonymous person gave this testimony. #MEAction has published it but did not

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U.S. – Center for Solutions for ME/CFS Seeks Applicants for Community Advisory Committee

The Center for Solutions for ME/CFS is seeking applications for the Community Advisory Committee. The deadline is Monday, July 9. Apply here: CAC application, available in Google Forms. The Center for Solutions for ME/CFS (CfS for ME/CFS) is a multi-institutional, inter-disciplinary research center dedicated to understanding the biology of ME/CFS, and developing diagnostic tests and methods for

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Watch the Stanford Research Update on T-cells

Dr. Mark Davis, Director of the Stanford Institute for Immunity, Transplantation, and Infection, talks about his work with T-cells to understand their role in ME/CFS and to determine if ME/CFS is an autoimmune disease. The Open Medicine Foundation (OMF) is funding the work of Dr. Davis into ME/CFS.

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#MEAction Scotland Speaks at Scottish Parliament Petitions Committee – Watch the Video

#MEAction Scotland appeared before the Scottish Parliament Petitions Committee on June 7th to give evidence on its petition to review treatment of ME patients in Scotland.  Watch the hearing: Not all petitioners are called before the Parliament’s Petitions Committee, so the fact that #MEAction Scotland has been summoned is very encouraging. The petition has received 7,000 signatures, and

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How Much Does the UK Dept. of Health Spend on ME?

MP Carol Monaghan (Glasgow North West) had asked the UK Secretary of State for Health and Social Care how much it plans to allocate to biomedical research for Myalgic Encephalomyelitis in the current financial year?  In quotations below is the response from the Minister of State at the Department of Health and Social Care, Caroline Dinenage. Her response only references past spending,

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The NIH Plan for ME is Dismal

Occupy M.E. describes the NIH’s current plan to address the crisis of Myalgic Encephalomyelitis as “do a little and wait.” Blogger Jennie Spotila describes the agency’s plan, which was found buried in the NIH 2019 budget request sent to Congress, as follows: NIH is going to wait for the new Collaborative Research Centers to lead

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Calling all Patients: Fill Out the Research Survey about PEM

DePaul University is asking the patient population to fill out a survey to better understand the effects of post-exertional malaise (PEM) in people with Myalgic Encephalomyelitis and Chronic Fatigue Syndrome. The patient community aided in the development of this questionnaire to more accurately define and measure abnormal responses to physical and/or cognitive exertion. “We are

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