ME/CFS

by Jody Smith

pixabay-shadow-ladyOf all the things ME/CFS is responsible for causing in our brains, this may be one of the biggest. Before I was lambasted by ME/CFS, I was an idealistic and trusting sort, loyal to a fault. I tried to see the best in people, tried to give the benefit of the doubt.
 
My soft malleable center has been pretty well kicked out of me over these many years of sickness. Along with the illness, there came a new world view, if you will. Because as the sickness settled in for a long stay, the people in my life gradually disappeared out the back door, never to return.… Read More
74 comments

by Jody Smith

skeleton-jaw

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

18 comments

by Jody Smith

pixabay-shopping-carts-2

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

81 comments

by Jody Smith

pixabay-sunFor most years in the last two decades, summer has been my best season. My serious crashes always took place between September and April. And every year, beginning in May, I would begin my slow climb back toward something resembling health.

Laying outside in the sun for 20 minutes or so in the mornings seemed to make a difference surprisingly quickly. Being able to go for walks, being out in the summer weather, increased my mood and seemed to be one of the factors decreasing my ME/CFS symptoms.
 
By mid-summer I usually had advanced to being a dull/normal.… Read More

58 comments

by Jody Smith

pixabay-metabolic-syndrome-link-cfs-o

As is so often the case, the research on a possible correlation between metabolic syndrome and ME/CFS is scanty. When I came across this threadbare research, though, I was desperate enough to check it out for myself.

I recognized myself when I read about the weight gain and difficulties in dropping the weight, but what really rang a bell was when I read that brain function can be severely affected. A poorly-working brain has been one of the worst symptoms of ME/CFS that I struggle with.
 
Diabetes runs in my family, and the fact that I had so many signs of metabolic syndrome was no surprise. … Read More

38 comments

by Jody Smith

pixabay-winter-storm

I’ll always remember my 25th wedding anniversary as being something special. I wish I could say that this was because my husband and I celebrated in some marvelous fashion, but that wasn’t it. At the age of 49, I thought I was having a stroke.

I got up that morning feeling fine — or no worse than usual at any rate — but when I went to my bedroom to get dressed all that changed. Waves of sensory chaos began to crash over me, and I sat on the bed waiting for it to pass. It didn’t. I’d had a wide variety of sensory chaos and problems with my brain for many years by that time, but this was different.… Read More

19 comments

by Jody Smithpixabay-clock-and-face

The struggle with energy (or lack of it) is an integral part of life with ME/CFS. Whatever other symptoms each of us deals with, the ongoing energy black hole and knowing when and how to use what little oomph we might have safely, is a conundrum we all grapple with, often without success.
 
During the times when we just don’t have anything to spare beyond breathing and the most basic thought processes, the quandary of how to use energy is irrelevant and out of reach. The question sticks its tongue out at us in derision.
 
For some of us though, there are times when we have a little extra energy.… Read More

39 comments

Jody Smith continues her review of Nova’s Patient Conference for Dr Klimas with a look at three patients who have improved significantly.

pixabay-silhouettes-people-gears-2“No one has ever taught me more about what to do than my patients.” So said Dr. Nancy Klimas at the Patient Conference hosted by Nova Southeastern University on January 26, 2013.

This has to be one of the greatest things any professional associated with ME/CFS has ever said. It may be one of the main reasons that Dr. Klimas is so successful and so trusted in our community. She went on to talk about the importance of listening — another reason she is so highly regarded by those of us with ME/CFS.… Read More

24 comments

exhaustion of post-exertional malaise by Jody Smith

Post-exertional malaise. The first few times I heard this term I could not grasp what it meant. Chalk that up to a CFS-crippled brain. The first few dozen times I tried to say it, my cognitive fog prevented me from being able to do so.

Many years later it rolls off the tongue, though not in a pleasant way. Each syllable brings home a sense of irony that a term that is too hard to remember and to say should be such a central facet of ME/CFS.

You might have symptoms I don’t have. I may respond well to treatments that have no positive effect on you.… Read More

28 comments

by Jody Smith

woman before full moon

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

46 comments

by Jody Smith

girl with laptop

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.”

Dr.… Read More

4 comments

by Jody Smithpixabay-PR-woman-sitting-laptop2

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

8 comments

by Jody Smithcandles in the dark at Christmas time

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

65 comments

by Jody Smith

elephant in the room

We’ve all known people we’d prefer to avoid. People who make us want to run the other way when we see them coming, because they do nothing but complain. It galls me no end that there are people who react this way to me if I talk about what life with ME/CFS has done to me.

Llewellyn King’s White House Chronicle blog helps to alleviate a bit of this for me. He writes about us with some understanding and concern about the devastation we deal with. King seems to sympathize with the secondary affliction we are faced with as well — the stigma of being seen by healthy people as lazy, lying or stupid.… Read More

55 comments

by Jody Smithhands around the world

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

50 comments

By Jody Smith

diagram for krebs cycle

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

8 comments

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

79 comments

Jody Smith

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

15 comments

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

25 comments

Posted by Cort Johnson

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

8 comments