Have you heard of our Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance? Please join Jody Smith in observing this day and honoring the 25% of those with ME/CFS who are most severely ill.
Can you read these words I’ve written on this page? Good. Then you know that I am NOT an example of the extremely ill with ME/CFS. Because if I were, you wouldn’t see or hear me. I’d be behind a closed door in my bed, trying to block out any sound or light.
Even if you were in the same house with such a person you might not see or hear them.… Read More
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by Jody Smith
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
It is a lesser known fact that Florence Nightingale was bedridden for her last half century thanks to an unidentified chronic illness. Florence would have understood us.
We still don’t get the world’s mainstream press on our day. But here again, we’re making inroads. And there are more of us standing on our shaky legs in more parts of the world.… Read More
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Is December getting to you? Jody Smith shares some thoughts on some of the struggles that all too often attend this time of year …
The holiday season just doesn’t live up to the hype, especially for the chronically ill and their caregivers. You people with ME/CFS know all too well what I’m talking about.
I am one of the lucky ones, and I know it. My symptoms are generally mild and while they keep my life small, I’m able to do more than many who have ME/CFS.
Today I drove for 20 minutes to a shopping plaza and picked up a few things for Christmas, then drove back home.… Read More
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Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 …
Once again, August 8 is important for those of us with ME, especially for those whose illness is quite severe. I’ve seen Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance in a few places with the words in a different order. I’m not sure what the original was.
I do know that whatever order the words fall into, this is a day to honor and turn the spotlight toward those who of necessity live in the dark, in the quiet, in isolation and desperation.… Read More
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OverTheHills wraps up our series of articles on this year’s 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
Big Ben and the Houses of Parliament, steps from the venue
Friday the 2nd of June was a big day for me, I’d never been to a medical research conference before, and I’d been looking forward to it as a major life event, no matter what the content. As ME patients we are used to being ignored, abused and denied, or at best fed crumbs, but everything about this conference was First Class.… Read More
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MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
The 12th Invest in ME International ME Conference (IIMEC12) was held at One Great George Street on Friday June 2nd, 2017.
You can view the full conference agenda (with photos and biographies of the speakers) here and the Conference Journal is available to download as a PDF or to view as a Flipbook.
The highly recommended DVD of the conference, which includes David Tuller’s pre-conference evening dinner presentation as well as all of the presentations at the public conference, is now available for pre-order.… Read More
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OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
The 12th Invest in ME International ME Conference (IIMEC12) was held at One Great George Street on Friday June 2nd, 2017.
You can view the full conference agenda (with photos and biographies of the speakers) here and the Conference Journal is available to download as a PDF or to view as a Flipbook. The highly-recommended DVD of the conference, which includes David Tuller’s pre-conference evening dinner presentation, as well as all of the presentations at the public conference, is now available for pre-order.… Read More
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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 two versions. ~ Richard7
When I offered to review this memoir I did not quite grasp that it was a memoir. I had focused on the author’s name Julie Rehmeyer, which I recognised, and the subtitle “A science writer’s odyssey into an illness science does not understand,” and assumed that I was offering to review a work of science journalism.… Read More
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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 Understand” details Julie’s illness and its impact on her life.
Her story is likely to parallel yours, the descent into illness; the search for answers in the sacred science and medicine; coming up empty; feeling abandoned to the ravages of disease; coming to terms with new realities; letting go of paradigms that don’t help; venturing into crazy treatment areas despite the logic challenges, fear and embarrassment; asking for help with mixed results; and working to grow emotionally, psychologically and spiritually.… Read More
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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 army nurse played a role in the creation of the Red Cross and originated the first school of nursing in the world.
She also had a debilitating, unnamed chronic illness which left her bedridden for the last 50 years of her life.… Read More
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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 this place and these comrades in disease was life-changing for me.
As is the common story with ME/CFS, I had gone through the personal culture shock of having had a perfectly fine social life, personal life, family life, and the ability to do most normal things with only the normal amount of struggle — and then had it all ripped away from me.… Read More
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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, whose name is left off the group photo.
It’s also true for people who are sick, but don’t look like there’s anything wrong with them.
Lisa Copen founded Rest Ministries in 1996 after being diagnosed with rheumatoid arthritis. She went on to establish Invisible Illness Awareness Week in 2002.… Read More
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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.
Dr. Ian Lipkin
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, and even treatments – but first they need the funds to complete the work.
ME/CFS is an urgent challenge in clinical medicine and public health. There is no diagnostic test or specific treatment for ME/CFS, and in the United States alone there are a minimum of 836,000 afflicted individuals.… Read More
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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.
Their footprint leaves next to no mark.
It’s a day that doesn’t get a lot of attention from outside our ranks. But we are determined to change that.
I have lived with symptoms of ME for the last quarter of a century.… Read More
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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 and biographies of the speakers) here. The highly-recommended DVD of the conference is now available for pre-order, and Kina did an amazing job tweeting the conference live for Phoenix Rising.
The first article in this series summarised all of the presentations at the conference.… Read More
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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 agenda (with photos and biographies of the speakers) here and the Conference Journal is available to download as a PDF. The highly-recommended DVD of the conference is now available for pre-order, and Kina did an incredible job tweeting the conference live for Phoenix Rising.… Read More
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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 some of the most promising biomedical research on ME/CFS, discusses possible broad models to understand the illness, and suggests practical steps to speed up progress.
Our paper is a direct call to the wider biomedical research community to actively target ME/CFS, but we hope that patients will also find the paper useful as a summary of current theories about what causes the illness, and some of the most promising research leads right now.… Read More
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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 research and clinical education funding that ME should be receiving” and the millions of doctors who are “missing out on proper training to diagnose and help patients manage this illness.”
The campaign quickly outgrew its original focus on the US capital and now includes patient-led protests on May 25th at US Department of Health and Human Services (HHS) offices in Washington DC, Dallas, San Francisco, Seattle and Boston, and the Centers for Disease Control and Prevention (CDC) offices in Atlanta.… Read More
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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.
No! Not this beautifully groomed woman with a mildly troublesome sore throat!
But do pictures that illustrate ME/CFS by showing office workers suggest that this level of function is as bad as this condition gets?
For years, patients have been up in arms about this issue, and #MEAction recently started a great campaign for patients to contribute their own photos to the cause.… Read More
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Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request…
On 1 February, ME/CFS patient Clark Ellis wrote an open letter to seven major British ME/CFS charities to ask them to contact QMUL.
He wanted them to write their own open letters to request QMUL to abandon its appeal against the Information Commissioner’s decision that it must release PACE trial data to a patient who had requested it for independent analysis.… Read More
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