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
Andrew Gladman takes a brief look at what cytokines are and how they might relate to our disease – exploring some of the research that is indicating their involvement in disease pathways…
Interferon Alpha By Nevit Dilmen
[GFDL or CC-BY-SA-3.0]
In recent years ME/CFS research has turned the spotlight on several areas, such as autoimmunity, the cardiovascular system and the autonomic nervous system.
While it is fair to say that much remains unknown about their function and behaviour, cytokines have a role to play in all these areas and they are being talked about with increasing regularity.
What are cytokines?
… 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
Mark Berry, Acting CEO of Phoenix Rising, presents our Annual Report for 2013
Phoenix Rising’s board of directors and volunteers were faced with a daunting set of challenges at the start of 2013, following the departure of our founder Cort Johnson. With only a skeleton staff of volunteers, the tasks that lay ahead of us were to stabilize the organization’s finances and administration; to recruit a new team of writers, editors and publishers to provide content for the website; to continue running the world’s largest ME/CFS forums; and to preserve Phoenix Rising’s reputation as a reliable source of information and a well-moderated meeting point for the worldwide ME/CFS community.… Read More
By Penny Clare
“I stayed alone in the darkness and the impossible became possible” – anon
The bedsheets take flight I
I was mostly confined to bed in a dark room – for years, and years, and years.
At some point, in this isolated sea, I started taking photos. From my bed, in the dark. And my relationship to my illness and circumstances took on a different meaning and found creative expression. It was my way of creating movement.
The vast majority of my photos were shot with no artificial or natural daylight, though daylight was occasionally gleaned from a small opening or crack in the curtains or door.… Read More
Ahead of the December 23rd deadline for public comment on the proposed IOM panel to create clinical diagnostic criteria for ME/CFS, Gabby Klein reviews the continuing opposition to the HHS/IOM Contract and the more favorable response from some ME/CFS organizations, and offers her personal take on the controversy.
While the mounting questions regarding the HHS/IOM contract have continued to grow and remain unanswered, the Institute of Medicine has been forging ahead with its work to create clinical diagnostic criteria for ME/CFS. On December 3rd, the IOM revealed a list of fifteen provisional panel members with a twenty day window for public comment.… 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
A concluding article for the ‘In Brief…’ Series, summing up the previous articles which attempted to explain the science behind fairly common topics and exploring how they relate to ME – by Andrew Gladman.
Over the past few weeks and months I’ve been busily researching, evaluating and writing the series of articles under the subheading of ‘In Brief…’. The original idea behind the articles came partly from frustration and partly from personal interest in the subject areas. From a personal standpoint I became sick just over a year ago and after roughly 6 months I landed a diagnosis of ME/CFS, forcing me to withdraw from university due to the plethora of symptoms I was and still am experiencing.… Read More
By Jody Smith
Hope is essential – especially when things look darkest. And yet, when you’re living with ME/CFS, stirring up hope can be the hardest thing to do.
Hope can be a double-edged sword that can loosen your bonds, or savage you when you wield it. Having hope is no guarantee of success. Daring to hope can feel like you are setting yourself up for the possibility of more pain. And let’s face it, you are.
Fanning that wee flame takes the courage of a warrior. It takes a certain recklessness that can be in short supply when you feel surrounded by the darkness that is ME/CFS.… Read More
Action for M.E. – the UK’s largest CFS/ME charity – launched a new research strategy in November based on the priorities identified by patients. We asked the Charity’s Chief Executive, Sonya Chowdhury, about the new strategy and also about the commitment to greater patient involvement. By Russell Fleming and Simon McGrath.
Sonya Chowdhury, CEO, Action for ME
Charities have always connected with patients – many were founded by patients and are supported with patient help, but few have tried to give patients a voice when it comes to decision making.
Action for M.E. is working to do just that, a task made far more practical by the internet: consultation has never been so easy, so fast or so cheap.… 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
The fifth and final article in a series attempting to explain the science behind fairly common topics and exploring how they relate to ME/CFS. This time the topic is the nervous system – by Andrew Gladman.
The nervous system, specifically the autonomic nervous system, is frequently discussed in relation to ME/CFS, with quite a plethora of research being targeted in this area.
Many of the symptoms that ME/CFS patients suffer with, such as crushing fatigue, tremor sensations and headaches, could come as a direct consequence of abnormalities in the nervous system.
In this article, I aim to explore the organization and general function of the nervous system as well as considering the research, both historic and ongoing, as it relates to ME/CFS.… 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