Words from my tribe

Dear CBS News,

I have been told that CBS is going to be running a piece about chronic fatigue syndrome (CFS) in the near future. I would guess that the timing of the coverage was in part because of the recent New York Times article reporting that a study showed that exercise and therapy helps alleviate the symptoms of CFS.

I have helped to take care of a friend with a serious case of CFS the past few years. I want you to know that in all of my life, I have never met anyone with such a horrible disease. I would rather have cancer in a heartbeat. The body aches, bouts of asthma, loss of consciousness and memory, fever, headache, diarrhea, and seizures are more than one can handle for years on end. My friend hates that she has to take so many meds to try to minimize her symptoms and has definitely tried everything, including graded exercise. In her particular case, exercise definitely makes things worse, in a very predictable fashion. She also does go to therapy and it does help her to a degree. 

So why am I writing this. There is a fraction of people in this world that think that CFS is just all in the head and that these people are lazy. As a first hand witness to one patient, I can tell you that it is not true. Sure therapy is helpful, but it is helpful for cancer patients, and any other person afflicted with a somatic disease. I urge you tell all sides of this story. I fear the NY Times piece has unjustly strengthened the ideas in peoples heads that CFS is psychological and the truth is that there are doctors, patients, and caregivers with first hand knowledge that know that this is a horrible disease (not psychological) that just hasn't been figured out by scientists and doctors yet.

Cliff Wang

Assistant Professor

Stanford University

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A short personal anecdote about CFS. 

I was at Amberlin's house (she has CFS) the other day, and she had bought three new outfits over the weekend and was excited to show them to me.  She modeled them for me, going in and out of the room in order to change and make a dramatic appearance, complete with little twirls and runway walks. Time spent: 20 mins tops.  Afterwards, she said "crap, I overdid it" and spent the next hour in bed, trembling and shaking.  

There's many more stories like that, some worse than others, each painful in its own way.

As a very healthy person, CFS is the most terrible disease I've ever come across.

-Mark

•••••••••

My friend has had CFS for 16 years.  At her best, she can move around for about an hour a day.  She is terrified of going to the ER when she needs emergency care because doctors are trained that CFS is a mental illness.  Most doctors will not treat her at all.  Some get visibly angry and shout at her.

Since she caught CFS, her symptoms have been similar to a severe flu with a highly amplified nervous system.  For the last 16 years, she has needed nerve-dampening medication to keep her resting heart rate below 110 bpm.  CFS is clearly a medical condition.  It's just obvious.

Physical exertion makes it worse.

Therapy can help a person survive, but it can't help find the cure.

Doctors need to be educated.
Please help to educate them.

Thanks!
Clayton Cook,
Someone who has spent a lot of time around people with CFS

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Dear Ms. Couric,

I understand that you are going to cover a story on CFS tonight at CBS. I would like to provide some input to you.

I am the father of a CFS patient who is my 38 years old daughter. She has suffered from CFS for the past 16 years. Prior to that, she went to Carleton College in Minnesota and acted as the modern dance director. She used to study all day and danced another 5-6 hours. She was a great student, a wonderful dancer/teacher and a warm-hearted young woman. She always had the drive and the required energy to fill her daily calendar with productive and enjoyable activities.

My daughter got ill in the Spring of 1995 after she graduated from college and has never recovered since then. I and my wife have participated in the caring of her for the past many years. I must say that during this long period time, we have learned the following:

This horrible CFS disease is a viral/physical illness. The medical community is not advanced enough to deal with this disease. A lot of the doctors simply did not know enough to help the patient. Quite often they set the patient back.

This disease is not rooted in the psychological origin. All the evidence I learned indicated that it is completely physiological.

I watched my daughter try to do graded exercises. it only set her back for days if not weeks.

I am very delighted that you are making people more aware of this terrible disease. I also would like to recommend that you base your story on all the informed sources, not just the recent NY times articles.

Thank you,

Lin Wu