Sunday, October 9, 2011

Cabin Fever

I love our home, which is off the beaten path.  The acreage gives us privacy, and being surrounded by forest is very peaceful.  A creek meanders through the woods along the edge of the back yard, where daytime brings all sorts of birds, from bald eagles to chick-a-dees.  When darkness falls, coyotes gather to yip and bark, keeping me company when I can't sleep.  All in all, it's a good place to be stuck, and since I'm too ill to get out much, stuck I am.

I have had ME for 26 years, but am one of the lucky ones who recovered enough to lead a (more or less) normal life for much of that time.  Up until 2 years ago, that is, when I suffered a relapse from which I have not recovered.

While I'm very grateful not to be bed-bound with this illness, being housebound has given me a bad case of cabin fever.  To heck with the woods and the birdies - I want to get out amongst people!!!  I want to be able to do normal people things, like go to the bank or the post office, without having to stop and think about whether I am up to it, or if it will make me feel worse.  It's not that I love going to the bank or the post office all that much (who does?) it's the face-time with other people that I crave.  Just exchanging pleasantries with the grocery store clerk makes me feel more human, more normal.  It gives me a high.

The illness itself is bad, (for the more severely affected it is hideous) and the resulting isolation just makes things worse.  I have often heard from others with ME "If not for my online friends, I would surely go insane!", and it's true!  Those friendships are invaluable, and help us feel connected.  Online conversations often lead to wishes like "someday, when we are well, we'll get together for a nice cup of tea and a chat".  Face to face, in the same room...that would feel so good! So many times we want those distant friends to be "present" friends.  People are meant to be with other people, and that's something this illness takes away from us.  It hurts.

Friday, June 10, 2011


Science has asked for a retraction of the paper by Lomardi et al.....

Huh?.. What?.. incredible... senseless... stupid... hurtful... inane... ridiculous... they've lost their minds... Whoa!....absurd... bizarre... asinine... silly... mystifying... Why?... what on earth are they thinking?... nonsense... illogical... travesty... unbelievable... shameful... puzzling... odd... sickening (like we aren't already sick enough!)... insane... unscientific... strange... low-down dirty... unusual...  uncalled for... something's rotten in Denmark... reprehensible... preposterous... alarming... just plain dumb... unforgivable... inane... disturbing... mind-boggling balderdash!

I call for a retraction of the request for retraction.

Friday, May 6, 2011

Hurray, it's MAY!

May is a busy month for folks with ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome).  ME/CFS Awareness Day is May 12th, and the ME/CFS Advisory Committee meets in Washington DC on May 10th and 11th. I have had this debilitating illness for over 25 years, and I am hopeful that advocasy efforts and new research will bring new treatments, and perhaps a cure.

Like many of us with ME/CFS, I vividly remember the day I first got sick. It was a typical Saturday morning in August, 1985. My younger son woke up very early, as usual (he was 3, it's what they do!). I took him downstairs, and got him settled in front of the tv with a bowl of Cheerios. Then I headed back upstairs....that was when it hit me, all of a sudden, like a ton of bricks. It was like all of the energy drained out of me in an instant. I could barely drag myself up the steps, and back into bed. That's where I stayed for the next 6 weeks. I couldn't read, or even glance through a magazine - that just required more stamina than I had. Even talking was almost too much to bear.

My doctor ran multiple tests, finally deciding that "maybe" I had a bad case of mononucleosis. Months went by, and although I improved to the point where I was rarely bedridden, each day was still a major struggle, and the symptoms continued, with horrible fatigue, low-grade fever, sore throat, headaches, night sweats, heart palpitations, cognitive difficulty (or "brain fog" in ME/CFS lingo), numbness in the extremities, blurred vision, and the list goes on and on.

To make a long story short, over the past 25 years I have had good days and bad days, relapses and remissions, but have never been completely well. Research has been done, some progress has been made, but no cause, cure, or effective treatment has been found. It's estimated that at least four million Americans have ME/CFS, and that estimate is surely low, since there is no diagnostic test available. I am not complaining, and I am not looking for sympathy. My story is just one of millions from around the world, and many of those people are far worse off than I am, essentially bedridden, or housebound, for years and years, with no end in sight. I, along with many other advocates, hope to promote understanding and awareness for a disease that has been trivialized for far too long. If you know someone who is suffering from this, or you'd just like more information, The CFIDS Association of America, at, is a good place to start.  The Whittemore Peterson Institute for Neuroimmune Disease is at the forefront of research into my illness, along with other neuroimmune diseases such as fibromyalgia, Lyme disease, Autism, and Gulf War Illness.  Donations may be made at

Thanks so much for reading this! Let's hope that, by May 2012, we can look back and say "Wow, look how far we've come!"

Wednesday, March 23, 2011

Power Outages & Fortunate Folks

I hate power outages.  They're especially bad at night, but even during the day, I'm not a happy camper.  No lights, no tv, no microwave....all that is frustrating, but the worst thing is - no computer!!!

Yes, somehow, the internet has become an integral part of my life.  I run an online business, keep up with family and friends via email, play games, shop, read the news, etc.  All in all, pretty typical.

Enter a relapse of ME/CFS a little over a year ago, which has confined me to my home most of the time, and I have found new pathways on the internet.  I signed up for facebook, and there began to connect with high school friends I haven't seen in forever, and found some long lost friends I didn't think I would ever hear from again.  But it didn't end there - somehow or other, and I don't remember quite how it started, I began to find others with neuroimmune disease.  I became "plugged in" to a "community", where I have found friendship, understanding, support, information, and advocacy opportunities (not to mention lots and lots of laughter....who knew that sick people were so darn funny?!)

I'm sure this story is familiar, in some ways, to many of you.  If you are sitting (or laying, as the case may be) in front of your computer, and reading this blog, and I are among the fortunate ones.  We are able to connect.  We are not alone.

With 1 to 4 million Americans suffering from ME/CFS (as many as 17 million world-wide) how many are unable to connect?  How many are alone?  And how do we reach out to them?  I don't have the answer to that, but I do know that every effort we make to educate others, every email we send to government officials, every dollar we donate to neuroimmune disease causes, every petition we sign, every comment we make on news stories...all of these things will perpetuate change.

If we just keep it up, I firmly believe that the day will come when the power will be back on for all of us!

Friday, January 21, 2011

XMRV: The retrovirus you'll be hearing more about.

It's like a best daydream, and worst nightmare, all rolled into one.  The daydream is that the cause of ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) would be found, the nightmare is that the ramifications of the discovery boggle the mind.

In the October 8th, 2010 issue of the journal Science, the Whittemore Peterson Institute published their discovery of a link between the retrovirus XMRV (xenotropic murine leukemia virus-related virus) and the neuro-immune disease, ME/CFS.

That's the daydream - finding a virus that could very well be the cause of ME/CFS.  The nightmare begins with the list of other diseases that seem to be related to this same virus....prostate cancer, multiple sclerosis, Lyme disease, certain types of lymphomas, breast cancer, Gulf War Illness, autism....

This is a potential public health crisis, and there are many questions that need to be answered, and answered fast.  Does XMRV cause disease?  If so, which ones?  How is it transmitted?  How prevalent is it in the healthy population?  What are the possible treatments available now?  How quickly can new treatments, aimed specifically at XMRV, be made available?

ME/CFS has been left unchecked for over 25 years, allowed to spread until millions of people all over the world are ill.  Now is the time to put serious money into the research.  We need to get those questions answered!

Donations to the Whittemore Peterson Institute maybe be made here:

Links to more info:

blood donor bans:

XMRV and leukemia/lymphoma:

XMRV and prostate cancer: