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
Jody Smith considers how things we consider beautiful can help feed a starving soul ...
I spent every day for years propped up on pillows on my bed. I could see out my window to the left. My messy closet was to the right. Looking straight ahead I saw a television, a messy desk and a dresser.
Then one year on a rare Christmas shopping expedition, my daughter Rachel the Chauffeur was with me in a department store, and as we neared a bunch of prints (pictures not fabric) I said in passing, “That’s nice.” I stood and looked for a moment at a scene of what felt like a French village.… Read More
It has been seven years since Jody Smith began seeing her Naturopath Doctor. Time then for a brief reflection on the extent to which a variety of interventions may have helped move Jody forwards in her own battle with ME/CFS…
February, this year, marks seven years since I began seeing my naturopath, Dr. Kelly Upcott. For six and a half years, I saw her every month, and if, for some reason, there was five or six weeks between appointments, I would begin to deteriorate rapidly. But all that changed last summer.
Circumstances prevented me from getting in for two months, and we were both pleased to find that there had been no setbacks.… Read More
In the second and final part of Andrew Gladman’s journey, he finally receives the diagnosis that best seems to fit his symptoms, but as his health shows no sign of improving, he reluctantly decides to withdraw from his biochemistry degree and spend more time to try and reach an accommodation with his illness…
“It was early November 2012 and I found myself in a ragged state, to say the least. I’d been back and forth to the surgery countless times, and was now on first name terms with the receptionists. Yet the doctor’s own attitudes towards me grew increasingly infuriating – some even believing I was simply having trouble settling into university!… Read More
Jody Smith considers how her life had become one of necessary isolation, and how a chance encounter with new neighbours and the possibility of having them in her home, led to feelings of fear and insecurity. Looking back she reflects on how these concerns have slowly improved and how the occasional visitor is now more welcome…
I live in a cul-de-sac that contains half a dozen houses. And, as I think about it, living on a cul-de-sac – or dead-end street – strikes my twisted sense of humour as being a great, though unintended, picture for living with ME/CFS.
Its after dark, and through my living room window, I see the headlights of any cars driving in or out.… Read More
The IACFS/ME Spring Conference promises to be one of the main events of 2014, and with ‘early bird’ tickets for patients still available, Searcher provides an overview of what we can expect, as well as interviewing the IACFS/ME President, Dr Fred Friedberg, before preparing to attend the conference herself…
The 11th biennial IACFS/ME conference will be held in San Francisco at the Parc 55 Wyndham Hotel from March 20-23, 2014.
It was last held in Ottawa in 2011, at a time when the focus for research, and of patient interest, was perhaps directed at XMRV.
Much has changed since that time, with the focus moving to new areas, so we expect to hear more of these developments – especially given the impressive line-up of speakers.… Read More
It has been a devastating twelve months for Andrew Gladman after he took well meant advice to ensure his vaccinations were up-to-date. He was ready to begin study at university, but the vaccines seem to have led to some very obvious and bad reactions that did not immediately resolve. It appears that this trigger, not uncommon among a significant minority of those with an eventual diagnosis of ME, and perhaps his reaction to the treatment with antibiotics, are what has led to Andrew’s subsequent ill-health and to his later diagnosis. In his own words, Andrew takes us through this difficult and unexpected period in his life…
“It’s always said that time flies when you’re having fun, but for me this last year since the onset of my illness has really flown by, and I can honestly say that it has not been fun.… Read More
Bugs are not all bad, in fact many in our gut are essential to good health, but problems with these could help explain some diseases, possibly even ME/CFS. Simon McGrath takes an introductory look at the Microbiome – an area that is fast becoming a focus for several research teams looking at our own illness…
Home for gut microbes; few survive in the stomach but they flourish in the small intestine and dominate the colon – 60% of the dry weight of poop is bacteria.
The microbiome – the bugs that live in our gut and on our skin – has become a hot topic, not least because of the coverage of ‘faecal transplants’ that apparently cure life-threatening infections by restoring the microbiome with poop from healthy donors.… Read More
Ryan Prior recalls why he and Nicole Castillo decided to make a movie about ME/CFS, and explains why they’ve now decided to form the Blue Ribbon Foundation as a new non-profit organization
A year ago, I wrote a story for USA Today about my experience with ME/CFS that changed the trajectory of my life. The response to my story taught me just how neglected the ME/CFS patient population is. My plan after graduating from the University of Georgia had been to write about politics. I thought I would move back to Washington to work as a political journalist or as a speechwriter for a congressman or senator.… Read More
Your help ensured the National ME/FM Action Network of Canada romped through to the Semi-Finals of the Aviva Community Fund competition. Now we need to vote again and see them through to the Finals and a chance at that all important $100,000! Vote online, each and every day from 02 – 11 December 2013!
You did it! Your online votes helped get the National ME/FM Action Network of Canada through to the Semi-Finals of the Aviva Community Fund competition.
Now it’s time to vote again. You can make your vote each and every day, between 2nd and 11th December, and together we can try and get them through to the Finals and a real chance at that $100,000 jackpot!… Read More
Mark Berry introduces the new Phoenix Rising Store and explains how you can donate to Phoenix Rising for free while doing your holiday shopping online.
At the risk of stating the blindingly obvious, the annual festive season is now well and truly upon us.
In the United States, today is Thanksgiving Day, so I’ll take this opportunity to wish all our American readers a very Happy Thanksgiving…and I’ll encourage you to look forward to Black Friday, Cyber Monday, and the rest of the shopping festival to come, with the Phoenix Rising Store firmly in mind…
Here in the UK, Thanksgiving is a bit of a mystery to most of us, but we’re already gearing up for Christmas, and for those who think far enough ahead, the Christmas shopping is well under way.… Read More
By Jody Smith
In North America, the end of November traditionally kicks off the holiday season which runs till the beginning of January. “Holiday season” may seem to be at best an ironic term, at worst a bad joke, for describing this most taxing of time periods, especially for people who are chronically ill, and often poor and isolated as so many are who have ME/CFS.
In the United States, Thanksgiving pulls the trigger for the holiday season. It’s an occasion that does its best to bring some light and comfort to a cold, bleak time of year. At least, in theory.… Read More
Tom Kindlon has been nominated in two categories for his herculean efforts with regard to health activism on the internet and in particular his work in disseminating the reality of the PACE Trial and GET/CBT as ‘effective’ treatments for ME/CFS. By Firestormm.
The other day, I happened to notice a link posted on the Phoenix Rising Facebook page to the WEGO Health Activists competition, and saw that Tom had deservedly been nominated in the “Best in Show: Twitter” and the “Health Activist Hero” categories.
Tom has been one of those ever-present characters in my ME-world for as long as I have felt able to get back online, and his painstaking work on the PACE Trial and on those less than satisfactory, Cognitive Behavioral Therapy and “Exercise” studies, has been truly outstanding.… Read More
Jody Smith reflects on how vital she has found the slow return of her writing ability – how it has helped with the expression of feelings and experiences, contributed to reestablishing a sense of self, and has proved such an important and productive means of social interaction…
Soliloquy – A dramatic or literary form of discourse in which a character talks to himself or herself or reveals his or her thoughts without addressing a listener.
In my life before ME/CFS, I did a lot of writing. I kept a journal most of my life, and in the years before becoming ill, I was also writing for newsletters for my church and my homeschooling group.… Read More
Astrid13 recalls the alarming mental confusion associated with her life of chronic illness and explains how her own search for answers may finally be yielding results – though she still has a long road to travel…
In 2006, following a miscarriage, I began to suffer the most horrible cognitive decline.
A D&C had been performed under general anesthesia and after a brief recovery at the hospital, I was free to go home.
However, the days that followed began what was to become the most confusing and alarming time of my life.
My hormones were raging, my emotions were going haywire, and I was convinced that I had also left my brain in that cold and sterile Operating Room.… Read More
Jody Smith relates how tiny victories helped her regain a life despite her limitations.
What is it about situations that are unfamiliar that make our brains feel lumpy and our bodies feel like they are moving (or trying to) in another dimension?
When I was at my sickest with ME/CFS, this wasn’t much of a problem, because I was spending most of my time hugging my bed, trying not to fall off the world. When I got a bit healthier, the unfamiliar began to present a new kind of problem, needing new strategies to be worked out for daily survival.
For instance, when I was once again able to dress myself and venture outside of my house, stepping out of the front door was just the first of a series of overwhelming challenges.… Read More
Claudia S. Miller, M.D., M.S., is an allergist/immunologist and tenured Professor at the University of Texas School of Medicine at San Antonio.
Janis Bell (JanisB) reviews her personal journey of chronic illness after being inspired by a new article written by Jill Neimark and appearing online today in Discover magazine. It highlights the work of Dr Claudia Miller (pictured) and her theories relating to extreme chemical sensitivity and toxicants, a condition she terms, Toxicant-induced Loss of Tolerance or TILT.
By the time I finished Jill Neimark’s “Extreme Chemical Sensitivity Makes Sufferers Allergic to Life,” (November 2013 issue of Discover Magazine – available free and online today), I was reconsidering my own story, the story I tell myself about the illness that changed my life.… Read More