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
Gabby Klein provides a useful summary of what was a very important, and quite extensive, IOM open meeting. US Government representatives, patient organizations, advocates and individual patients all made formal presentations…
Chair, Dr Ellen Wright Clayton,
Committee for Diagnostic Criteria ME/CFS
The Institute of Medicine (IOM) has been formally engaged by the US Department of Health and Human Services (HHS), to complete a review of diagnostic criteria and available evidence, for the purpose of making recommendations for a new clinical definition for ME/CFS, one that might also result in a new name for the disease(s).
The first open IOM meeting was watched by ME/CFS stakeholders from around the world and representatives from our community made impressive presentations to the assembled committee.… Read More
Simon McGrath recently secured an interview with the world famous Dr Ian Lipkin – a scientist who continues to believe that ME/CFS has a physical cause – to discover more about his plans for a major study of the gut microbiome and to find out why he’s asking the patient community for its support…
Dr W. Ian Lipkin has demonstrated a clear commitment to ME/CFS research. First came his study looking at Borna virus in the 1990′s, and then the landmark study that ruled out XMRV as a cause, and most recently we have heard about the huge pathogen and immune study – a vast collaboration with many key clinicians and researchers, including Dr Dan Peterson and Professor Jose Montoya.… Read More
The Medical Advisor to the ME Association, Dr Charles Shepherd, writes about the importance of blood testing prior to receiving a diagnosis, explains what each test means including for children, and considers when new tests might be necessary…
Human blood contains red cells, white cells, platelets and plasma. Red blood cells carry oxygen around the body – so a deficiency or abnormality will probably cause anaemia.
White blood cells help to fight off infections and respond to allergies. They are sub-divided into cells called basophils, eosinophils, lymphocytes and neutrophils – each with a slightly different function.
A rise in the overall number of white cells usually indicates the presence of infection or inflammation somewhere in the body.… 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
The CDC multi-site clinical assessment of CFS/ME is now underway, and Bob took the opportunity to interview Dr Beth Unger, the lead scientist in charge. The outcomes of this significant study are likely to be widely influential and the means by which the CDC employ objective measures has become something of a hot potato, especially in relation to exercise testing…
Elizabeth, R. Unger, PhD, MD
Chief, Chronic Viral Disease Branch
The CDC department that oversees chronic fatigue syndrome, under the leadership of Dr Beth Unger, has begun a large study using data from 450 ME/CFS patients, collected at seven well known clinical sites across America (see below).… 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
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