by Jody Smith
Thanks to the misleading name Chronic Fatigue Syndrome, the misunderstandings concerning sleep are numerous and contradictory. Those who are unfamiliar with ME/CFS often may conclude that we are sleepy all the time.
It doesn’t really work that way.
Some of us can’t sleep at all. Others sleep for long periods but never when they’d like to. Many of us lie helplessly awake all night longing for respite, only able to succumb to sleep as the dawn begins to break.
My own experience for a number of years was a reversal of the usual sleep-wake cycle. I rarely saw my family since I slept most of the daytime hours, only feeling a semblance of wakefulness after sunset.… Read More
by Jody Smith
Llewellyn King has been gaining quite a reputation for himself in ME/CFS circles of late. He has been a journalist, foreign correspondent, editor, creator of his own publishing group, and public speaker over his long career. And now King is an advocate for people with ME/CFS. He writes about us often on his White House Chronicle blog.
King is also co-host of MECFSAlert, a YouTube program that he said was “developed to comfort the sick, to stimulate doctors to learn more about it and their patients, and to get the government to take it seriously, and spend more money and to have more passion for research.”
by Jody Smith
Nova Southeastern University College of Osteopathic Medicine is hosting a Patient Conference for Dr. Nancy Klimas on January 26, 2013. Klimas is considered to be an expert in immune disorders and one of the world’s best researchers and clinicians for ME/CFS.
The theme of the conference is CFS/ME and Gulf War Illness 2013 – A Celebration of Hope and Progress. The doors of the conference are open to all who are interested in hearing what Klimas has to say.
Dean Anthony Silvagni DO, PharmD will be welcoming the Institute for Neuro Immune Medicine to the NSU family.… Read More
by Jody Smith
Christmas can prompt intense mixed feelings for those of us with ME/CFS. Those of us who were not stricken in our youth may have some wonderful memories of the holiday season. This can prompt anticipation and longing, accompanied by dread.
Anticipation may be triggered as an automatic desire for a repeat performance of those early experiences. Longing stirs if this is coupled with the realization that we are not in a place where those earlier times can be repeated. And dread strikes the failing heart if Christmas as we knew it will not be happening again this year, and possibly will never be the same again.… Read More
by Jody Smith
The FDA held the Myalgic Encephalomyelitis and Chronic Fatigue Syndrome Webinar: Working Together for Change on November 15, 2012. An invitation had been issued earlier to Phoenix Rising and anyone interested in attending.
There was not much mention of ME/CFS until well into the webinar, which surprised me and left me dismayed at first. Instead, speakers talked about the origins and history of the FDA, as well as about several other severe health conditions including HIV/AIDS, cystic fibrosis and muscular dystrophy. An advocate for CF and another for MD spoke at length about the challenges that faced them in the early days of advocacy in bringing attention, funds and support to those suffering with these diseases.… Read More
By Jody Smith
Energy. It’s defined by Merriam-Webster.com as the force that drives and sustains mental activity, and the capacity for doing work. ME/CFS is noteworthy for a dearth of it.
Anyone with ME/CFS knows all too well what it’s like to be so exhausted that we can’t lift our heads. We have very likely had the experience of being stopped mid-thought as the mental energy used by our brains seems to simply disappear. We know what it is to be unable to sit upright, or to walk down a hallway, because we do not have the energy.
When we say we lack energy we don’t mean what other people do by that.… Read More
By Jody Smith
ME/CFS is not the only condition that the medical community can’t seem to reach a consensus about. Adrenal fatigue is another topic that raises conflicting opinions from different quarters. Is it a valid diagnosis? Is it not? Is this the paradigm of how the adrenals work? Is that paradigm closer to the truth? The debate goes on.
But let the argument continue in medical circles. In the meantime sick people are trying to find ways of getting well. The following paradigm for adrenal function and fatigue is one that has brought some healing for many that are ill.… Read More
Jody Smith reflects on the growth of the Phoenix Rising forums, from a handful of members in 2009 to several thousand today…
There may have been other forums for people with ME/CFS back in 2009, but if there were, I didn’t know about them. Phoenix Rising’s forums, as far as I knew at that time, were unique. So when I stumbled upon this place I began to seriously hang around.
Forum posts from all sources were infrequent back then, maybe half a dozen in a day. As more members began to slowly find their way in, there were the occasional riotous days of (I’d estimate) perhaps two dozen posts by half a dozen people.… Read More
Image courtesy of imagerymajestic at FreeDigitalPhotos.net
by Jody Smith
The Food and Drug Administration has deemed ME/CFS to be one of 39 conditions that may receive their special consideration. But of these 39, only 20 conditions will be picked. If ME/CFS is one of those 20, patients’ comments will be heard through public meetings and through mailed and emailed messages.
The FDA evaluates and approves drugs before they can be put on the market. They may also create incentives that will encourage companies to turn their focus to ME/CFS.
The FDA is holding a public meeting and is looking for input from ME/CFS patients about the FDA’s patient-focused drug development initiative.
… Read More
Dr. Reeves produced the five year plan for the CDC’s CFS research team. He was in his element. He seemed sincere and open; patients think of him as something of an ogre but you’d never get sight of that in his presentations. Kim McCleary later noted that he’s a master at the art of presentation. But one suspects that he’s masterful in the way that many government officials are. They’re always very nice but it’s often difficult to get a straight answer to a question.
The standard MO for dealing with an issue seems to be to give a history lesson.… Read More
I first met Lisa Faust at the Symposium on Viruses in 2008. She was at a table with a group of women all of whom were battling a similar sounding illness. They were definitely the acute onset infectious disease subset. My mouth dropped as I listened to their stories; some were on complete disability, others had had harrowing but slow recoveries – nobody was close to healthy. Most counted themselves very lucky to be able to get to the conference at all. There were Montoya patients on Valtrex, Chia patients on interferon, other patients on Lyme treatments.… Read More
That’s right – in the midst of the greatest economic contraction since the depression the NIH has, all of sudden, found itself in the greatest single expansion in its history. How and why demonstrates how much influence one Senator can have. Desperate to get Arlen Spectors vote on the stimulus package, the Obama administion acceded to a 30% increase in the NIH’s already enormous budget. This year the NIH will have to find a way to spend 10 billion dollars more than it did last.… Read More
Dr. Hanna at the NIH has repeatedly said that given the tight budgetary times there’s just no money for ME/CFS. A look at NIH funding across the past few years suggests, however, there’s more to the issue than she suggests. Underneath the seemingly placid surface of a stable budget a fierce fight goes on every year with some diseases winning big and some losing big; a tight budget does not mean that a disease is doomed to a stagnant budget.… Read More
What do infection, stress, over-exercising and the intensive care unit have in common? Different researchers believe that each can trigger a chronic fatigue syndrome-like (ME/CFS) state. A recent article in the New York Times added a short stay in the intensive care unit (ICU) to the list.… Read More
We know the ME/CFS research program at the CDC is in big trouble but what about its cousin at the NIH? Three years ago the CFIDS Association of America was praising the CDC’s chronic fatigue syndrome program and slamming – in a federal document – the horrible performance of the NIH’s ME/CFS program. The only thing that’s happened to change that viewpoint is the implosion of the CDC’s program; things are still as bad as ever over at the NIH.… Read More