I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is only the epilogue that was significantly changed between these
ContinueJulie Rehmeyer’s ‘Through the Shadowlands’
Writer Never Give Up talks about Julie Rehmeyer’s new book “Through the Shadowlands: A Science Writer’s Odyssey into an Illness Science Doesn’t Understand” and shares an interview with Julie … A riveting new book by science journalist, patient and ME/CFS champion, Julie Rehmeyer, has just hit the stands. “Through the Shadowlands: A Science Writer’s Odyssey into an Illness Science Doesn’t
ContinueMay 12, 2017, Is International ME/CFS and FM Awareness Day
International ME/CFS and FM Awareness Day is May 12th, 2017. Jody Smith shares some information about upcoming events and ways you can be heard … Can you believe it’s been 25 years since Thomas Hennessy, Jr., chose May 12th to be our international awareness day? He was influenced by the fact that May 12th was also Florence Nightingale’s birthday. This famous English
ContinuePhoenix Rising: The Gift That Keeps on Giving All Year Long
This holiday season Jody Smith turns her eyes to the people of Phoenix Rising and gives thanks for you all … Phoenix Rising is a community that I will always love. Seven years ago I stumbled upon this place in its early days. I had been isolated and lonely for a number of years because I have ME/CFS, and finding
ContinueInvisible Illness Awareness Week 2016: Our Voices Need to Be Heard
Never heard of Invisible Illness Awareness Week? You’re not alone. Jody Smith sheds a little light to make it more visible … From time immemorial, people have been pushed aside and ignored for one reason or another. Nobody likes feeling invisible. That goes for the kid in the playground who doesn’t get chosen for baseball, for the person overlooked by the boss,
ContinueLipkin’s Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work. Columbia University’s Center for Infection and Immunity(CII) has seriously upped the ante on the initial microbe discovery project in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Their impressive, rigorous new study could point the way to diagnostic tests,
ContinueAugust 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis. August 8th, 2016 is Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis, an important day in the ME community. It’s a day that is intended to bring attention to those whose voices are the most quiet, whose presence is so easily overlooked.
ContinueNew Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson’s introduction and Dr. Whittemore’s keynote speech, at the 11th Invest in ME International ME Conference in London. The 11th Invest in ME International ME Conference (IIMEC11) was held at One Great George Street, just down the road from its former home, on June 3rd, 2016. You can view the full conference programme (with photos
ContinueA New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
Mark Berry presents the first in a series of articles on the 11th Invest in ME International ME Conference in London … The 11th Invest in ME International ME Conference (IIMEC11) was held at One Great George Street, just down the road from its previous home on Birdcage Walk, on Friday June 3rd, 2016. You can view the full conference
ContinueProfessor & patients’ paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS … Recently, Professor Jonathan Edwards, with patients and carers as co-authors (including me), published a peer-reviewed editorial in the medical journal Fatigue: Biomedicine, Health & Behavior. The article became their most-viewed paper within a few days. The editorial highlights
ContinuePhoenix Rising supports the Millions Missing global day of protest
Phoenix Rising is delighted to support the demands being made in the ME/CFS community’s first-ever global day of protest … Campaign platform #MEAction is organising a global day of protest for ME and CFS, with a campaign called “Millions Missing,” reflecting the millions of patients “missing from their careers, schools, social lives and families,” the millions of dollars “missing from
ContinueThe Real ME: A Stock Photography Resource for the Media
Sasha announces a new resource of appropriate photos for ME/CFS media stories … We’ve all seen them in the news stories about ME/CFS: the guy in a suit at the office, yawning; the beautiful woman sitting at her desk with her immaculate make-up and elegantly coiffed hair, hand to her head and looking slightly pained. But do pictures that illustrate
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