We've been cheated by ME/CFS and we all know it. That's a no-brainer, if you'll pardon the cognitive pun. And loss didn't just result from the bad things that befell us. It also encompasses the good things that just ... never came. The absence of bounty. Of wholeness. Of peace.
Take my family just as one example. I remind myself that my life used to be much harder. I don't have to worry that our bills can't be paid or that we can't feed our family. I no longer deal with the kind of pain, cognitive dysfunction and neurological weirdness and terror spawned by ME/CFS that I used to on a daily basis.
Listen, I'm grateful for the respite. But that doesn't erase the losses and their consequences and scars. It doesn't magically remove the boot print of ME/CFS and the poverty and the isolation that came with it, from my life, from my husband Alan's...
Our Newly Ill Face Their First Holiday Season with ME/CFS
by Jody Smith
Don't look now! The holiday season is on its way. I've lived through decades of them with ME/CFS. So have many of you in our chronically ill community. That's beyond sad for all of us. But at least we have some idea what we're contending with, and have learned our ways of handling it ... or not.
For the newly ill, though, life is suddenly full of ominous shadows and question marks. I'm betting all of us old ME/CFS veterans can remember the first time everything was ripped away, regardless of how many years ago it happened. There's no pain quite like that first onslaught.
I remember the Herculean challenge in my early stage of illness of trying to be a mother and wife at Christmas time. I used to bake and decorate and do the holiday shopping. I belonged to community groups...
ME/CFS and the Change of Seasons: How Does This Affect You?
by Jody Smith
The advent of autumn can hit Jody Smith pretty hard. She's learned a few ways to lessen the damage every year. How do you handle the change of seasons?
Summer is my best season, hands down. Fewer ME/CFS symptoms get in my way. After a while, I tend to forget that this is a summer hiatus ... but I am reminded around the end of August or early September.
And that's because the subtle but inexorable ME/CFS decline would begin. The lessening of hours of light, the warmth dissipating make for an unpleasant picture of what happens to me every autumn.
It would really throw me off at first. Even after all these...
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. They are likely busy focusing on breathing in and out. You'd be surprised how much work that can be...
This section contains all the articles that have been published by Phoenix Rising over the years. As you will see if you browse here, some of the articles are outdated--either the research has been superseded or retracted or the article features an event or campaign that is now in the rear-view mirror.
To make the currently relevant articles more prominent, we would like to create an archive section where we could house articles that are part of our history but are no longer current enough for members to want to comment on them.
If you would like to volunteer to work on this--at your own pace, with no deadline--please write to me through a conversation. This is a fun job--browsing through history.
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.
Brain metabolic activity in CFS
Three studies have examined metabolic functioning in the brain using proton magnetic spectroscopy (MRS) (Chaudhuri et. al. 2003, Tomoda et. al. 2000, Puri et. al. 2002). The levels of three metabolites (N-acetyl aspartate (NAA), choline, creatine) in the brain are examined using this technique.
Puri’s study found that CFS patients (a) have significantly higher levels of choline in the occipital region of the brain than do controls and (b) exhibit an abnormal choline gradient between the motor and occipital cortex (Puri et. al. 2002).
Chaudhuri’s study found increased choline levels in the basal ganglia (Chaudhuri et. al. 2003). A very small...
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...
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.
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...
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...
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.
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 —...
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.
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...
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. Symptoms have swelled...