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Evelien’s Journey to Meet the EU Parliament

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Hi everyone! First of all I would like to express my heartfelt thanks to all who contributed to the success of the petition that asks for the EU to fund biomedical research on ME. So many people helped out by writing to their MEPs, translating documents, making phone calls, sharing the ...

ME Services in the UK Not Fit for Purpose

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A recent survey conducted by #MEAction UK found that UK specialist myalgic encephalomyelitis (ME) services are not fit for purpose. Areas investigated included: Management strategies Experience attending a clinic Cognitive behavioural therapy (CBT) Activity management   The survey was conducted to provide evidence to the National Institute for Health and Care Excellence ...

Update: Occupy USDOJ Demonstration in Washington DC

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The demonstration has kicked off yesterday June 1st, with a great start, at the Justice Department in Washington DC.  The aim of this demonstration is to "occupy" as long as possible.  Their permit is valid till July 4.  Some demonstrators plan to stay a week.  Others will try to stay

Update: Marathon for Myalgic Encephalomyelitis

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Tom Whittingham, running for his sister and ME Research UK Tom ran the Edinburgh marathon on May 31st as a personal challenge and a way to raise awareness and funds for Myalgic Encephalomyelitis research. Why did he do this? In his own words, "My sister Naomi has suffered from ME for over

Lymphatic vessels in the brain: Gamechanger for Neuroimmune diseases?

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It's rare that new research means rewriting textbooks. But new information discovered by University of Virginia School of Medicine researchers might do just that for neuroscience, immunology, and even anatomy. This discovery also has definite implications for the diagnosis and treatment of neuroimmune conditions like Myalgic Encephalomyelitis (Chronic Fatigue Syndrome). Excerpted from

Takeaways from The ME Association’s CBT, GET, and Pacing Report

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ME/CFS Illness Management Survey Results "No Decisions about me without me" The ME Association just released the results of a patient survey taken in 2012 that covered management and self-management courses commonly offered to patients with Myalgic Encephalomyelitis, Chronic Fatigue Syndrome, or Post-viral Fatigue Syndrome. The report (available in full on the
The OMF Severely Ill Big data study will look at blood and microbiome of myalgic encephalomyelitis / chronic fatigue syndrome patients

Q&A with the OMF Severely Ill Big Data Study

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The Open Medicine Foundation's big data study on severely ill patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is an exciting new project designed to uncover biomarkers by studying the sickest of the sick. Want to learn more? Your pressing questions about the study are answered below.   How long will it take to
Scientists at Columbia are looking at cytokines in Chronic Fatigue Syndrome patients

New hope for those with Chronic Fatigue Syndrome

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Could new cytokine research be paving the way to a diagnostic test for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome? Excerpted from Columbia Magazine - Spring issue: As many as four million Americans are thought to suffer from chronic fatigue syndrome, a disease characterized by symptoms that include persistent lethargy, headaches, muscle pain, mental fogginess,

Recapping ME/CFS Awareness Day – #May12BlogBomb

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May 12th is Awareness Day for ME, Fibromyalgia, Lyme Disease, Chronic Fatigue Syndrome and Multiple Chemical Sensitivity. Every year bloggers use this opportunity to express their views and to raise the profile of these often misunderstood and maligned conditions. A call was put out to bloggers to participate in a

Recapping ME Awareness Day – May 12th, 2015

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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

New Potential Cause of ME Found

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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...

ME Awareness at the Brighton Wheel and Brighton Sea Life Center

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  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

Spain hologram protest

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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

Scientists find clues into cognitive dysfunction in chronic fatigue syndrome

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A unique pattern of immune molecules in the cerebrospinal fluid of people with myalgic encephalomyelitis/chronic fatigue syndrome have been discovered, providing insights into the basis for cognitive dysfunction --frequently described by patients as 'brain fog'-- as well as new hope for improvements in diagnosis and treatment. Read more here