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Last week in review: CNN, Long-Covid Seminar, Severe ME Day & more!

Last week was inspiring and eventful! We had a huge turn-out for our US Advocacy Meeting about the National Institutes of Health’s (NIH) response to long Covid and ME, we co-hosted and organized a seminar for those with long Covid with amazing organizations and activists, #MEAction UK wrote an open ...
James Strazza sits with guitar in one image, happy and healthy, and in the next image he is laying in bed very sick.

Let Us Honor the Most Severe in our Community Today!

Let us honor the most severe in our community today, Severe ME Day, Saturday, August 8th. Severe ME Day is a day of remembrance when we think of those whom we have lost to myalgic encephalomyelitis (ME), and focus on those living with severe ME. For those of you in ...

Virscan: 1 Test for every virus that has ever infected you

Excerpted from Science and Popular Science A new test called VirScan would allow a patient to be tested for hundreds of viral infections at the same time. "To see if a patient has ever been infected by a particular virus, researchers expose antibodies in the patient’s blood to molecules with

I was led to believe there was ‘no future’ with with my diagnosis. Well, I beg to differ.

I have learned to cope with M.E., a serious and potentially disabling chronic disorder, through art and creativity. Excerpted from The Journal.ie I remember reading articles on M.E. Awareness Day within the first year of being diagnosed with this debilitating illness. It was a story about somebody who had this

Update: Occupy USDOJ Demonstration in Washington DC

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

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

Lymphatic vessels in the brain: Gamechanger for Neuroimmune diseases?

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

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

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
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

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
Scientists at Columbia are looking at cytokines in Chronic Fatigue Syndrome patients

New hope for those with Chronic Fatigue Syndrome

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,

Recapping ME/CFS Awareness Day – #May12BlogBomb

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

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

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

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