Raising Funds For ME Research

The Fight That Follows Pain And Prejudice

Carol Head

  From MS Blog Magazine.   More than four decades ago, while a high school junior in Columbus, Indiana, I decided I wanted to run track. But I was told that girls were not allowed to compete in sports. Angry and confused—why can’t girls do sports?—I fought for and eventually won the right to start […]

Mike Harley’s 28 EU Marathons For ME Awareness

Mike Barcelona

  My name is Mike Harley, I’m 35 and live in Bristol, UK and I’m running Malta Marathon as part of my challenge to run a marathon in every country in the EU (28 in total) to help raise money and awareness for biomedical research to find a cure for Myalgic Encephalomyelitis (M.E.) One of […]

Worldwide ME Talent Search !

Talent

  Hi Everyone.  I’m on the lookout for anyone in the ME Community, anywhere in the world who would like to lend their talents to raising ME Awareness. We are working on putting together an album consisting of Music, Poetry Readings and the like, so are on the lookout for singers, writers and musicians to […]

ME/Chronic Fatigue Syndrome

quadram-logo

  From The Quadram Institute.   Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS), is a severely debilitating condition that is thought to affect up to 250,000 people in the UK. Symptoms include widespread pain, extreme tiredness and an inability to concentrate. The causes of ME/CFS aren’t known, and there are no effective […]

13th Invest In ME Research International ME Conference

invest

  Background   As an independent UK charity with one objective being to find, fund and facilitate biomedical research into ME, IiMER has, since 2007, been championing the idea and the necessity of international collaboration in research into ME. The charity has promoted the development of a Centre of Excellence for ME for eight years […]

Ron Davis Talks On ME/CFS………And Texas Listens

Ron Davis

  By Cort Johnson in Health Rising.   Ron Davis was invited to the University of Texas to talk to the biological and bioengineering departments over two days. His long talk was putatively on developing affordable technologies that can be used by doctors, but it ended up being more than that. On the technology side, […]

OMF Receives $1 Million Donation

Ron Davis

  From The Open Medicine Foundation.   2018 is starting off to be a fantastic year. Today, OMF has received a $1 million donation! The Pineapple Fund has generously donated $1 million to OMF through Bitcoin, stating, “We chose the Open Medicine Foundation because ME/CFS is a serious and complicated condition that torments the life of its sufferers. […]

The York ME Community –  York Inter Company Fantasy Football League For The York ME TGA Shield

Winner

  The York ME Community runs an Inter-Company Fantasy Football League sponsored by TGA Mobility.  This is to help raise awareness of the illness that affects around 250,00 people in the UK, and 800 in the York area alone. Companies enjoyed a great 2016/17 season with Bransby Wilson coming out on top and winning the […]

How Disabled People Care For Each Other When Doctors Can’t

Caring

  By David M Perry in Pacific Standard.   In her new film Unrest, Jennifer Brea offers a groundbreaking look at the power of community where medicine falls short. When Jennifer Brea was 28 years old, she got sick and spiked a fever of 104.7 degrees. The fever went down, but soon she found herself […]

This New Documentary On Chronic Fatigue Syndrome Is A Must-See—And Not For The Reason You Think

Unrest

  By JE BANACH in Vogue.   Most of us only watch Netflix in bed. Jennifer Brea self-directed a documentary, now streaming on the service, from hers, offering up a stunning glimpse of life with myalgic encephalomyelitis, the mysterious illness better known as ME, or chronic fatigue syndrome. Brea was a Ph.D. student at Harvard University and a soon-to-be bride […]

NIH Striving To Avoid False Hope In Chronic Fatigue

Scientist using a microscope

  By Joyce Frieden, in, MedPage Today   BETHESDA, Md. — The National Institutes of Health is trying hard to bring real hope — not false hope — to patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), NIH director Francis Collins, MD, PhD, said during an exclusive interview with MedPage Today. “Five years ago … there was this big […]

Trial By Error: My Six-Month Review

David Tuller

  By David Tuller, DrPH.   This month is the start of the second half of my one-year crowdfunding commitment to keep reporting on ME/CFS, so I figured I should review what I’ve done so far, what I still hope to do, and what changes have taken place during the last six months. So, here […]

Linda Tannenbaum Worldwide Tour Talk

Open Medicine Foundation

  From The Open Medicine Foundation.   As a part of the 2017 End ME/CFS Worldwide Tour, Linda Tannenbaum, CEO/President, spoke in six European countries and seven U.S. cities. Each visit included a presentation, Q & A session, and personal meet and greet. On the tour, Linda had the honor of meeting hundreds of patients, parents […]

Mike’s EU Marathons for ME – Malta

Malta Flag

  MALTA I’ve been speaking to the Malta ME, CFS & Fibromyalgia Alliance about ME there and here’s a summary of my findings from talking with them and my own research. Number of ME patients in Malta There is no study or any estimates to show or at least a demarcation if there ever was […]

Time for Unrest: Why patients With ME Are Demanding Justice

Jen Unrest

  By Nathalie Wright in The Independent.   “I feel seen for the first time!” exalts one viewer. “I feel vindicated. I finally understand what’s wrong with me, I think I’ve had this all my life,” says another. A doctor admits, “I feel so ashamed.” The film in question is Unrest, a documentary directed by and featuring Jennifer Brea, a former […]

A Reboot For Chronic Fatigue Syndrome Research

research

  By Amy Maxmen in the Nature International Journal of Science.   Name a remedy, and chances are that Elizabeth Allen has tried it: acupuncture, antibiotics, antivirals, Chinese herbs, cognitive behavioural therapy and at least two dozen more. She hates dabbling in so many treatments, but does so because she longs for the healthy days […]

Changing Lives While Living With Chronic Illness

Erica

  By Chris Goudreau in ValleyAdvocate.com.   Erica Verrillo of Whatley has written more than half a dozen books and launched a non-profit national organization, all while being partially bedridden for the past three decades. Verillo has Myalgic Encephalomyelitis (M.E.), a chronic and fluctuating neurological disease characterized by extreme exhaustion, muscle weakness, sensitivity to pain, confusion, forgetfulness, […]

Trial By Error: Bristol’s Complaint To Berkeley

David Tuller

By David Tuller, DrPH.   As it turns out, the University of Bristol did complain about me to Berkeley. I found out recently that there has indeed been “private and confidential communication” at a “senior level,” as Sue Paterson, Bristol’s director of legal services, suggested in her thuggish letter to me last month. I haven’t seen this […]

Urgency: Ron Davis And His (Non-NIH Funded) ME/CFS Collaborative Research Center

Cort_Johnson

  By Cort Johnson in Health Rising.   This is one of a series of blogs that will look at what’s coming up in 2018 from ME/CFS research foundations. Urgency Those ten NIH research center proposals contained a hidden gift.  Of the ten grant applications, seven failed, leaving at least 21 potential individual research grant applications that […]

The York ME TGA Inter Company Fantasy Football League – Calling All Businesses !

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  Not long to wait now to see which team is top at Christmas ! This competition is being supported by 12 business teams, 10 from the York area in helping to raise ME Awareness in York.  All registration fees to join the league went to Invest in ME Research to help find a cure […]

Chronic Fatigue Syndrome (ME/CFS) Researcher And Patients Shine During NIH Call

Cort_Johnson

  By Cort Johnson in Health Rising.   It’s great the NIH is doing telebriefings a couple of times a year to inform the chronic fatigue syndrome (ME/CFS) community of their progress.  The calls can be more or less interesting. This one was definitely on the more interesting side. NIH Intramural Study Proceeding on Pace Nath […]

ME Questions Put To Department Of Health

Soap Box

    Hi.  You might recall that I posted a few weeks ago to say that my MP was writing to the Department of Health on a couple of points on my behalf.   Julian Sturdy is my local MP and I’ve got him on board to help me on the ME Awareness front.   I received […]

Welcome to IiMER Research Blog !

invest

  From Invest in ME Research.   Invest in ME Research have created a page on their Centre of Excellence website for blogs by researchers funded by the charity to describe what they are doing, what experiences they have, what they think of research into ME, what they hope to achieve – and allow more communication with […]

A Movie David Goes Against A Goliath Of A Disease

Jennifer Brea

    By Llewellyn King, in Huffpost.   The movie is called “Unrest.” The unrest of the title is one of the many symptoms of Myalgic Encephalomyelitis, also known as Chronic Fatigue Syndrome, often expressed as ME/CFS. It is at one level a touching love story and at another, where its real purpose lies, a cry […]

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