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
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
Gabby (Nielk) presents a nightmare vision of what the future might hold for ME/CFS patients in the US, if the Institute of Medicine (IOM) contract to redefine ME/CFS turns out as badly as many patients and advocates fear.
Imagine that you magically wake up to a day in October of 2015. Unfortunately you are still ill with ME/CFS and it’s just another ordinary day of suffering for you. As usual, you log on to your computer with your favorite drink in hand. You start becoming edgy because you can’t seem to find your usual sites. You don’t see any mention of Myalgic Encephalomyelitis (ME) nor Chronic Fatigue Syndrome (CFS). … Read More
The fourth in a series of short articles attempting to explain the science behind fairly common topics and exploring how they relate to ME. This time the topic is the Cardiovascular System – by Andrew Gladman.
The cardiovascular system is not one that is commonly discussed in relation to ME, and yet it is an area that research has shown displays one of the more measurable abnormalities in patients.
Suffice it to say that many of the symptoms that ME patients suffer with, such as muscle fatigue, dysregulation of the nervous system and headaches, could come as a direct consequence of abnormalities in the vascular system.… Read More
It will cost you nothing more than an online vote to help see the National ME/FM Action Network enter the second round of the Aviva community competition to win $100,000. Voting in this round closes 14th October and you can vote every single day until then – so please join us and cast your vote now! By Firestormm.
Join us in sending the National ME/FM Action Network of Canada through to the second round of the Aviva Community Fund competition so that they can win $100,000 to be used to help raise awareness on 12th May 2014.
This is the first of three qualifying rounds of the online competition.… Read More
Gabby (Nielk) pays her respects to fellow ME patient and staunch advocate Thomas Hennessy Jr. who died earlier this month. Rest in Peace at last, Thomas.
Thomas M Hennessy Jr
A little over a week ago, on September 9th, the international Neuroimmune Disease (NEID) community was shaken by the news that well known and warmly respected patient advocate Thomas Hennessy Jr. had died.
“A former advertising executive with a knack for a bold phrase,” Tom had kindly granted Phoenix Rising an in-depth interview that we featured again last year, called, “Fierce Advocacy”. He revealed a lot about his inner determination and previous efforts to fight for awareness and recognition of these serious diseases; showing us how committed he was to ensuring changes were made for the better.… Read More
Andrew Gladman explores the current research climate of ME/CFS, discussing how existing research ties into the emerging autoimmune hypothesis.
Link: ‘New data reveal first predictive biomarkers to tailor rheumatoid arthritis therapy’
Image: computer generated image of an antibody
Throughout the history of ME it is safe to say that understanding of the condition and the research itself has been somewhat fractured at best and lacking significance in many areas. In the last 30 years, following the Lake Tahoe outbreak which piqued the interest of doctors and media, little progress seems to have been made in terms of physiological understanding of the disease processes involved, perhaps due to the stigma of ME as a purely psychological entity which is only in recent years being shaken off.… Read More
Professor Jonathan Edwards
The charity Invest in ME’s plans for a UK Rituximab trial got a substantial boost at the end of July when Jonathan Edwards, Emeritus Professor of Connective Tissue Medicine at University College London (UCL), agreed to act as their advisor for the study.
‘No UK expert is better placed than Professor Edwards to advise us on setting up a Rituximab trial for ME patients’, stated the charity, and it’s hard to argue with that. Drs Fluge and Mella believe that the timing of ME patients’ response to Rituximab-induced B cell depletion indicates that ME may be an autoimmune disease, and it was none other than Professor Edwards who proposed, in a 1999 paper in Immunology, that self-perpetuating B lymphocytes drive human autoimmune disease.… Read More
by Charlotte Dyer
In May 2005 I met my future husband. Living 200 miles apart we led a hectic life rushing between work and family and meeting each other at the weekends for 48 hours before starting all over again. Joel’s job was particularly demanding, meaning he often had to work until the early hours of the morning, snatching a few hours of sleep before making the two hour journey to my house to spend two nights together before he had to make the journey back home again.
His job also required him to travel abroad sometimes and most notable was a trip he took to India during which he felt terribly ill and seemed to take several weeks to recover.… Read More
Though notes would be good…
Photo: Catalina Olavarria/Flickr
‘Go the extra mile,’ you’re thinking, as you lie on your sofa. ‘I can’t go the extra inch. This isn’t some sponsored walk thing, is it?’
No, my friends, it’s not. It’s an exercise in financial efficiency – oh, the fun! – that will allow even the most broke among us to have a go at raising some money for our favourite charities.
Here’s how it works. Most of us have everyday opportunities to save a bit of money here and there but we don’t bother because the amounts are fairly trivial and it doesn’t seem worth the extra effort.… Read More
Professor Stephen Holgate says ME/CFS is a spectrum of disorders that need to be understood through new approaches, and patients must be partners in research. Simon McGrath reports.
Houses of Parliament, site of Prof Holgate’s talk
ME/CFS probably isn’t one disease, or even a few different ones – but could be as many as fifteen. So said Professor Stephen Holgate, Chair of the UK Research Collaborative (CMRC), when he addressed the Forward ME Group in the House of Lords on 2nd July. He also argued that a radical New Science was needed to tackle ME/CFS and said patients must be partners in research.… Read More
London: site of the proposed UK Rituximab trial
Photo by fussy onion/Flickr
On June 6, the Norwegian Medical Research Council agreed to give a large enough grant to the Haukeland Rituximab trial for the study to begin. Later that day, the charity Invest in ME announced that they were initiating a UK Rituximab trial. It seemed to come out of nowhere. There were no details – cost, size, location, research team – but there didn’t need to be. The ME community started throwing money at the trial and trusted Invest in ME when it said it could be done.… Read More
by Jody Smith
Poor dental health may not be at the top of the list when you think of ME/CFS problems. But many of us who have been sick for any length of time can tell you some horror stories about our teeth. I don’t know if having ME/CFS is directly linked to poor teeth and all that can result, but the inability to get to a dentist or to pay for a visit will assuredly have a direct effect.
Do you have dental coverage? Many with ME/CFS don’t. I certainly don’t. We followed the only path open to us for years, which was to not go to the dentist. … Read More
Gabby (Nielk) reports on the launch by The 25% Group of this special day of understanding and remembrance for those severely affected by ME
I wrote the poem below about two years ago, in the midst of one of my harshest crashes. I was bedridden for many months. I was in pain most of the time and totally helpless and reliant on others. It was the darkest time of my life…
However, I consider myself one of the lucky ones, in that I eventually recovered to the point where today I am able to somewhat function: mostly within the confines of my house.… Read More
by Jody Smith
Chronic illness and the Poverty Diet often go together. Far too often. I was on the Poverty Diet for many years. I have ME/CFS, my husband Alan deals with crippling past injuries and fibromyalgia. We raised our children on the Poverty Diet during more than half their childhoods.
It is a no-brainer (pardon the ME/CFS pun) that when you can’t work, you aren’t making any money. It is less obvious, to many who haven’t been through it, that people who can’t work because of poor health are not automatically protected by any kind of federal safety net – social, financial or otherwise.… Read More
Mark Berry introduces Dr Neil Coulson and Anna Maddison from the University of Nottingham, and their new 2-part research project with Phoenix Rising
The most rewarding part of my work with Phoenix Rising is meeting people who tell me that treatment information they have found on our forums has dramatically changed their lives and their health, or that the forums provide them with valuable social and emotional support in their isolation and are a vital ‘lifeline’ for them. After all, the forums are a central part of Phoenix Rising’s work – they are the largest ME/CFS forums in the world, and how I found the organization in the first place – and the non-profit provides and manages these forums in the hope and belief that they are a valuable resource to the ME/CFS community.… Read More
No, not that one!
Photo: Markg6, Flickr
Amazon.com, Inc.: it’s huge! It’s the biggest online retailer in the world and, weirdly, we can easily divert some of its mighty river of money into Phoenix Rising’s coffers. For free! Free, my friends!
First I’m going to tell you how to do it and then I’m going to tell you why.
How to make Amazon give Phoenix Rising free cash
Amazon pays a whacking 5% to 8% of the price of your purchase to any affiliate site from which you arrive at it, with absolutely no extra cost to you.
Phoenix Rising has affiliate links to the following Amazon stores and clicking on your country’s link will take you straight to your usual Amazon home page (go on, have a go):
• Phoenix Rising’s US Amazon Store
• Phoenix Rising’s UK Amazon Store
• Phoenix Rising’s Canadian Amazon Store
• Phoenix Rising’s Deutsches Amazon Speichern
• Phoenix Rising Française Amazon Store
• Phoenix Rising Españoles Amazon Store
Whatever you buy during that ‘trip’ to the store will benefit Phoenix Rising.… Read More
Backwards, forwards.. just so long as you vote!
Image by Dean Terry/Flickr
After pushing so hard for so many of our organizations in these online voting contests, it’s refreshing to ask you to vote for us this time! Both Phoenix Rising and PANDORA are in the Bogs (lovely name) Footwear contest in which the top two charities will each win $2,500 (£1,700, €1,900), and we can all vote for both.
Phoenix Rising, of course, provides the ME/CFS community with reliable information, advocacy, support for other charities and a busy forum; PANDORA Org advocates and educates about neuro-immune diseases including ME/CFS, fibromyalgia, Lyme and Gulf War Illness, targeting local and national US government agencies to influence policy and improve patients’ lives.… Read More
by Ryan Prior
Photo: Amanda Bloch Prior
On June 10, I announced in USA Today that I am setting out to write and co-direct a documentary film — The Blue Ribbon — on ME/CFS with my girlfriend, Nicole Castillo, who is a filmmaker with a special interest in medical and social justice projects. I am a writer and researcher who has had ME/CFS for over six years. We believe our youthful enthusiasm, specific qualifications, life experience and goals make us the perfect people to step up and do this.
The whole of my life revolves around a single day: October 22, 2006.… Read More
Gabby (Nielk) and Russell (Firestormm) continue our summary of the FDA Workshop with a look at the first part of Day Two – a discussion entitled “Innovation, Expedited Pathways, and Regulatory Considerations”
The FDA Drug Development Workshop for Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis (ME) took place on the 25th and 26th of April 2013. It was well attended by patients, advocates and doctors, together with representatives from the CDC and pharmaceutical companies.
The workshop was also broadcast live over the internet, enabling many more people to follow what happened without being there in person. This meeting was an opportunity for us to be heard, and continues to be an opportunity as comments can still be added to the docket until August 2nd 2013.… Read More