Author: #MEAction

Recapping ME Awareness Day – May 12th, 2015

While ME awareness day does not garner the attention that other illness do, patients and advocates are working hard to bring light to the issues. EmpowerHer summarizes the inspiring actions and events that took place this year: Monuments were lit up around the world including Peace Bridge in the United States, and Langevan Bridge, Niagara Falls, CN

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Help DePaul Researchers Learn About Post-Exertional Malaise

We are conducting a research study because we are trying to learn more about what occurs before and during post-exertional malaise for individuals with Myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS), as well as how these individuals define the term post-exertional malaise. We are asking you to be in the research because you have a diagnosis of ME or CFS, speak English, and are 18 years of age or older. If you agree to be in this study, you will be asked to complete a survey. The survey will include questions about your post-exertional malaise experiences related to your ME or CFS. We will also collect some personal and demographic information about you, such as age, gender, race, marital status, income, level of schooling, disability information, and work status. The full survey can be completed online. If there is a question you do not want to answer, you may skip it.

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New Potential Cause of ME Found

New potential cause of ME found. Research found that Important signalling mechanisms are disrupted with receptors in the brain, gut, cardiovascular and immune systems. Research findings will be presented at the end of May 2015. Read more…

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Crowd funding for The OMF ME/CFS Severely Ill Big Data Study

As part of our OMF End ME/CFS Project, this study will conduct a comprehensive, “Big Data,” analysis on severely ill ME/CFS patients with the goal of finding sensitive  and distinctive molecular biomarker(s). Very little research has been done in the bedbound. severely ill patients because they are hard to reach. By looking at the simple

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ME Awareness at the Brighton Wheel and Brighton Sea Life Center

  The Brighton Wheel and the Brighton Sea Life Centre were lit up blue last night in support of ME Awareness. A group of ME Mums and Dad’s held posters from Action for ME for photographs that will be published along with an article on ME in the Argus newspaper. The photos were also circulated

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More NIH Funding Needed for ME/CFS Research!

According to the recent Institute of Medicine report, up to 2.5 million Americans have chronic fatigue syndrome (ME/CFS). Patients with ME/CFS are more functionally impaired than those with other disabling illnesses, including congestive heart failure, multiple sclerosis, and end-stage renal disease. The NIH funds ME/CFS at $5 million per year, and that amount is estimated by

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The $10 Challenge For Columbia CII ME/CFS Research

The Microbe Discovery Project began as a patient-driven crowdfund to raise funds for world-class researchers Dr Ian Lipkin and Dr Mady Hornig at Columbia University’s Center for Infection and Immunity (CII), New York. Research into ME/Chronic Fatigue Syndrome is sorely needed and there is a paucity of research into the illness. Patients raised a whopping

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Spain hologram protest

Activists in Spain, after a new gag law curtailed the freedom to protest in front of Congress or parliament buildings, staged what may be the world’s first hologram protest. Holographic projection opens up a whole new world of possibilities for how to bring to the outside world the images, voices, and stories of patients who are to ill to physically engage

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