Interesting article on CFS

A friend recently sent me to website to read a story about CFS and wanted my opinion on it.  I am just going to copy and paste the story instead of summarizing it.  

"I’ve been sick since 2001 when I failed to recover from what appeared to be an acute viral infection. It has left me mostly house-bound, often bed-bound. In effect, I’ve had the flu without the fever for almost ten years: the aches and pains, the dazed sick feeling, the low grade headache, the severe fatigue. It cost me my career as a law professor; it cost me the ability to be active in the lives of my children and grandchildren.

Because I meet the Centers for Disease Control (CDC) case definition, I’ve been given the diagnosis, Chronic Fatigue Syndrome (CFS). Although there have been some promising developments (a possible connection to a retrovirus; the presence of unique proteins in the spinal fluid of CFS patients), as of this writing, there’s no proven cause and no cure. This is not surprising, given that so little money is allocated for research into this debilitating illness. Why? One reason is the absurd name. As others have pointed out, calling it, “Chronic Fatigue Syndrome,” is like calling Emphysema, “Chronic Cough Syndrome,” or Alzheimer’s, “Chronic Forgetfulness Syndrome.”

On October 15, 2009, Dr. Nancy Klimas of University of Miami’s Miller School of Medicine spoke about the lack of research money to the New York Times:

My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses, and I can tell you, if I had to choose between the two illnesses in 2009, I would rather have H.I.V.

When doctors ask what’s wrong with me, I can give one of two answers, neither of which is satisfactory in the context of obtaining quality health care for myself and others with CFS. That leaves me in a no-win position in the doctor’s office.

Option #1: If I say, “I have Chronic Fatigue Syndrome,” I’m likely to be discredited as a witness to my own condition. I’ve had doctors tell me there’s no such thing as Chronic Fatigue Syndrome. One doctor said: “Just drink some coffee.”

Option #2: If I say, “I contracted a serious viral infection and never recovered,” it goes down better, but by saying this, I’m undermining the effort to bring legitimacy to the illness. Legitimacy means research money. By avoiding the phrase, Chronic Fatigue Syndrome, I’m also undervaluing the lifelong work of many doctors, including Nancy Klimas, Dr. Anthony Komaroff of Harvard Medical School, Dr. Charles Lapp of the Hunter-Hopkins Center, and Dr. José Montoya of Stanford University School of Medicine, all of whom have dedicated their careers to CFS research and patient care.

A few weeks ago, I had an appointment with a doctor regarding something unrelated to my illness. The New Patient Form asked, “Are you in good health?” I checked “no.” Next question: “If you checked ‘no,’ please explain.” How many times have I faced “please explain” on a medical form and had to choose between those two unsatisfactory options? I’ve lost count. I needed the best care I could get from this doctor so, playing it safe, I reluctantly took option #2 and wrote, “Contracted a serious viral infection in 2001 and never recovered.”

On the back side of the form was a list of symptoms with instructions to put a check in the box next to any that applied. Looking down the list, I reached: “Fatigue.” What’s a person with CFS supposed to do with that choice? Most of the people I know say they’re tired. But the fatigue of Chronic Fatigue Syndrome? The CFIDS Association of America calls it bone-crushing fatigue. I call it bone-crushing and sickly fatigue—that flu without the fever. Laura Hillenbrand, bestselling author of Seabiscuit and Unbroken, and a CFS sufferer herself, put it this way: “This illness is to fatigue what a nuclear bomb is to a match. It’s an absurd mischaracterization.”

Given no alternative but “Fatigue,” I checked the box and moved on.

In the exam room, the doctor looked at my form and asked: “What’s this viral infection you never recovered from?” Without using the phrase Chronic Fatigue Syndrome, I succinctly explained the different theories regarding the cause of my continued illness. He listened and then said: “What’s the diagnosis?” I was cornered. “Chronic Fatigue Syndrome,” I said. I watched him disengage from me. He swiveled on his stool, put his note pad down, turned back to me as if we’d just met and said: “What have you come to see me about today?”

On March 3rd, Dr. Montoya said in a talk at Stanford University that it was his dream that the medical community would someday produce a formal apology to patients for not believing them all these years when they said they were facing a real illness.

Millions of us share your dream, Dr. Montoya."

I get questions about this all the time.  Thankfully, I haven't ever been told by a doctor that my sickness is all in my head, and I'm very grateful for that.  I was, however, told for almost two years that it was just mono again and it would go away in a few weeks even though the same doctor continued to tell me that...not sure what she was thinking.  Anyways, I know a lot of people who spent years or even their whole life trying to find someone to treat them for CFS.  I did have one doctor (the one who diagnosed me) who said he recognized the disease, but he didn't know how to treat it so I would have to go to another doctor.  He did give me a list of a few local doctors that had experience with CFS, and he was very helpful.  My current doctor is very supportive and helpful.  She has worked hard on figuring out how to treat me and has found some abnormalities in my blood work that the other doctor completely missed. I am still on the waiting list to see the CFS specialist in SLC, but hopefully I will get in soon!  I have heard really good things about her, and I can't wait to meet her!

I completely agree that CFS should not be called CFS.  It is frustrating to me as I'm sure it is with any disease that people who have never had the disease don't know how you feel, and it's so hard to explain.  Even though I'm always talking to Nick about how I'm feeling, he still says he has no idea what it must feel like.  He even gets to see me through it all!  The fatigue that I feel is excruciating. It controls my entire body.  If I don't rest/sleep exactly when and for how long that it wants me to, it punishes me.  If I don't get at least 8 straight hours (minimum) of sleep, I am super nauseous the next day, and it continually gets worse until I get the sleep I need.  And by the way, even though I normally get 12 hours of sleep each night, I am still exhausted when I wake up.  When I feel like I have enough energy to stop sitting on the couch to do something, I LOVE it.  It makes me feel alive!  Even if that one thing is folding laundry or cooking dinner.  If I do it for too long though, my body punishes me again.  I get super weak, nauseous, and lightheaded.  I know by experience if I don't immediately stop what I'm doing, I will faint.  The other day I felt great so Nick and I decided to go chill at a park nearby.  We got in the car and started driving.  After only 3 blocks I felt so weak that we turned right around so I could go lay down.  It was very frustrating. I also want to add that the "bone-crushing fatigue" of CFS is only one of the symptoms I deal with.  There are about 20 other ones that are just as bad as the fatigue.  That's another reason why I think the name needs to be changed. 

Anyways, I just wanted to give my opinion.  I feel like I kind of just complained the whole time, so I'm sorry if it sounded like that.  I just get irritated when I hear that people, especially doctors, tell patients that it is all in their head.  It makes no sense to me why they would say that.  Maybe that's just because I've felt what it's like to have CFS and I know there's no way it's in my head.  I don't know.  So please, if you come across someone who thinks that way, please set them straight.  

Also, I do want to say that I have been doing a lot better this past month!  I will update you with that info next week after I have another visit to my doctor.  

I'm interested to know what you think about this guy's experience!  

Just for fun, here's a video that my cousin took of us for his publications class (I think).  Please excuse the fact that we are in our pjs and I look like crap...it was late at night and we totally didn't know he was going to be filming us :)

Sam Yoshida's video on CFS

I'm definitely dying laughing at this...not sure why cause it's not funny but I am.