Why should home care be the theme on Understanding and Remembrance Day for Severe ME on August 8? Helen Brownlie of the 25% ME Group has written an explanation for Phoenix Rising …
August 8, 2015, will be the third annual Understanding and Remembrance Day for Severe ME. To mark this, the 25% ME Group — a support organisation for people who have severe myalgic encephalomyelitis — are focusing on care. We’ve done this in view of the truly dreadful service responses that our members increasingly report encountering here in the UK.
Clearly there’s a major gap between the care needs of people with severe ME and professional perception.… Read More
by Cort Johnson
It’s no fun when your ‘gas tank’ is empty. In fact it’s crazy how many of us are running on fumes on so many levels…personally, medically, financially…How nice it would be, out of the blue, to have a little fill up once in a while.
With the winners of the contest riding away with a cool $5,000 in Citgo gas cards, the Citgo Refueling Contest provides a chance, literally, to fill chronic fatigue syndrome patients’ gas tanks. I was a lucky recipient of one of those cards from a past winner and I can tell you it made a big difference during a difficult month financially.… Read More
In the next five hours NIDA will either win 20K or 10K
We can’t thank you enough for the support you’ve given Phoenix Rising. In one day we’ve rocketed up to 136th from 179th – a rise we suspect is rather unprecedented :). We’re tremendously honored by your support.
The big concern now is keeping the Neuro Immune Disease Alliance (NIDA) in the $20,000 category. NIDA needs to be in the top 96 to win $20,000 and right now with they’re at 87th and things could go either way in what is easily the busiest day of the contest.
NIDA is the brainchild of two parents, Linda and Don Tannenbaum, whose daughter fell suddenly ill with ME/CFS when she was sixteen. … Read More
(Things are finally starting to move…The FDA is responding but no meeting dates are set. Stop now and we risk losing our chance; keep working and we can bust this thing wide open. We are on the brink of getting a historic meeting at the FDA…
The FDA can be very pro-active in the drug approval process – we’re simply asking that they be pro-active with the only major disorder they’ve never approved a drug for. – ME/CFS! Let’s keep the pressure on by emailing the feds every day until the 25th….Cort.)
To All who took ACTION requesting THE FDA TO HOLD A STAKEHOLDERS MEETING for ME/CFS.… Read More
Reno (the Littlest Big City in the World’) is not your typical conference destination but it was hard to imagine a better spot for the 9th International IACFS/ME meeting. Much water has passed under the bridge since the plight of those Incline village residents made headlines across the country thrust this disease back out into the open. At the time Dr. Peterson was living the good life with a small practice in a resort town in Sierra Nevada ski country.… Read More
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
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
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
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
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
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
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
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
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
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
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
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
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
Simon McGrath concludes his blog about the remarkable Prof George Davey Smith’s smart ideas for understanding diseases, which may soon be applied to ME/CFS.
George Davey Smith
Last November, science star Professor George Davey Smith gave a talk at the UK CFS/ME Research Collaborative (CMRC) Annual Science Conference laying out ideas for bigger, better, smarter research. Although much of his talk wasn’t focused specifically on ME/CFS in particular, his points are of great interest to the ME/CFS community.
This is because Davey Smith has said he’s keen to play a role in the largest research set of studies ever proposed for ME/CFS: Professor Stephen Holgate’s Grand Challenge, which is now moving forward.… Read More
As the old year wanes and the new one beckons, Jody Smith reflects on the nature of change …
Does the end of the year make you pensive and cause you to look back? It has that effect on me.
I don’t make New Year’s Resolutions. I don’t think I ever really did, but the last decade or two would have been enough to stifle that impulse. I’ve just been too aware that I don’t have that much control over what happens in my life.
It may just be that I am living less under the illusion that I am the Master of my own universe than people who haven’t been ill or broke for years.… Read More