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 has been taken by surprise by the value of having a dog when dealing with ME/CFS …
There’s been plenty of research indicating that having pets is good for your health. I never really noticed any particular benefits to having cats, though that may have had more to do with my cats. They’ve been fairly indifferent to my presence and we’ve shared a live-and-let-live type of relationship over the years.
Then I got a dog.
I didn’t even want this dog in the beginning, to be honest. My son Duncan had adopted Cleo, a German Shepherd-Lab mix that had ended up at the Humane Society after an injury that required amputation of her back left leg.… Read More
For Jody Smith, the ticking of a clock was enough at one time to chase her back to her bed. But with the passage of time, she has been able to reclaim her living room …
I have two clocks in my living room. One clock is on the wall across from where I usually sit at my computer. The other is on the wall to my left. I guess this might be an unusual arrangement, not to be found in most homes, but it has been practical for me.
I have had long intense bouts of what I have called tendinitis over the years, affecting my neck, shoulders, arms, hands, legs and feet.… Read More
After having lived for years with ME/CFS, Jody Smith learned there’s more to this beast of an illness than she realized, and that what might help one person may not help others …
When I first got back online five years ago, I was naive in the ways of this beast we call ME/CFS.
I guess I thought that whatever it was that I had was what you had … what they had … what that person laying on their face over there had …
Turns out I couldn’t have been more wrong.
I had been slowly recovering and I wanted so much to share what I learned with other people who were sick because then they would all get better too.… Read More
Graham, Janelle and Bob, have once again excelled themselves with their latest take on the ‘poisoned apple’ that was the PACE Trial…
Once upon a time, long, long ago a king and queen ruled over a distant land. The queen was kind and….
Whoops, sorry there! I got confused for a moment. Wrong fantasy tale…
Several years ago a team of psychologists and psychiatrists published the first of their fables about the effectiveness of CBT (and graded exercise) in treating ME/CFS. It was known throughout the world as “The PACE Trial”.
A group of valiant, honest crusaders, mostly members of Phoenix Rising, struggled diligently and bravely to produce an analysis of the faults of the trial and, hosted by Phoenix Rising, published their report.… Read More
Andrew Gladman reflects upon the recent IACFS/ME conference and the buzz surrounding a small molecule, leptin.
It’s safe to say that the past couple of weeks, following the IACFS/ME 2014 conference, have been something of a whirlwind in terms of new ME/CFS research being unveiled.
Now that the dust has had a chance to settle let’s take a step back and discuss a topic that many consider to be one of the most promising findings discussed at the conference.
Leptin seemed to be the word on many researcher lips. During the first day of the conference Anthony L.… Read More
In 2012, Maya, who had tried to cope with ME/CFS on her own for many years, attended a pain management centre in Wales, U.K., and is now able to achieve more through pacing and acceptance, than she had been able to before the course…
My name is Maya, I’m 42 and live in Mid- Wales. I have had ME for 8 years, am mostly housebound and use a wheelchair outside.
In April 2012, I underwent a three week residential ME/CFS management programme at Bronllys Pain and Fatigue Management Centre, based in Brecon, Mid-Wales.
My GP has been very supportive since my diagnosis but had run out of ideas so, when she suggested pain management, I felt I had to give it a go.… Read More
The second in a new series of ‘In Brief’ articles, where Andrew Gladman provides a helpful insight into the science behind fairly common topics, exploring how they relate to ME/CFS. This time he discusses the adrenal glands and why they can be such a talking point …
Diagram showing the location of the adrenal glands, above the kidneys
While the frequent topics of conversation relating to ME/CFS appear to now be infectious agents, autoimmunity and often a dysfunctional nervous system, many patients and researchers still turn their attention to problems within the endocrine system, namely the adrenal gland.
As the gland within the body centred around stress responses, it is initially quite a logical place to look for problems.… Read More
Searcher kicks us off on Day Two, with an autoimmunity overview, then we are into immunology and cytokines, we hear from Susan Levine and the allergy-related signatures study done with Lipkin et. al, a talk about paravirus B-19, Mady Hornig from CFI with more research, John Chia who presents on enteroviruses and we close with Nancy Kimas and Dan Peterson discussing diagnosis and treatments…
The 11th biennial IACFS/ME conference is being held in San Francisco.
Day Two, Science Papers, March 21, 2014.
We really are getting stuck into some serious science from our top researchers. Day Two (March 21, 2014), of the IACFS/ME four-day conference featured the presentation of new scientific papers.… Read More
The location has now moved to San Francisco, for the first day of the IACFS/ME 11th biennial event, and another exciting round of presentations to an even larger audience. Searcher was again present, with her Press Pass, and along with some very kind help, from Hope, managed to submit a solid review of some of the highlights…
The 11th biennial IACFS/ME conference is being held in San Francisco from March 20-23, 2014
Conference objectives from Dr Fred Friedberg, IACFS/ME President:
“The conference will a provide a number of fresh updated perspectives on CFS/ME, including new innovative professional workshops on management of the severely ill patient, pediatric CFS/ME, and an immunology primer for clinicians.… Read More
The 2014 conference season began yesterday at Stanford, home of Dr. Jose Montoya and his team, and searcher was there to provide a live commentary on the presentations from an all-star line-up of clinicians and scientists and which featured some exciting new developments on the research front…
Stanford plays host to the first of five conferences over coming days, and, thanks to our volunteer ‘searcher‘, all members of Phoenix Rising will be able to follow events as they unfold, live, in the members-only forum, and also with highlights via Twitter.
We will also aim to publish a public article – such as this one – on each of the days following a conference, providing everyone with a chance to catch-up on events, and after the conferences are finished, we will look at more in-depth analyses of the presentations: once we have had a chance to digest all the information, perhaps interview some of those involved – and pause for breath!… 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