CFS Similarities

While skimming last Sundays newspaper my attention was drawn to Parade magazine with an article about cancer survivors. As a disabled patient with CFS, I am forever intrigued by the way people with disabling illness cope.

I do not know how many comparisons can be drawn between CFS and cancer patients, but they do have this in common both patients, at least initially, look fine. Both CFS and early cancer patients look like anyone else, they look like they are healthy. As a CFS patient, I too often hear the comment, You look fine. I have never been sure that my healthy appearance is an asset. Too many times medical doctors have used the fact to point out to me that I really ought to be well. The implication being that if you look well, you ought to feel well.

Such a nonsensical view never applies to the diagnosed cancer patient. They are taken seriously because its cancer, and they have the test results to prove it. With CFS there are no test results to prove anything. I might look fine, but I cant get up.

As I thumbed through the magazine, an article titled Living After Cancer caught my attention. Under the heading of Fatigue, I was stunned to read the following paragraph

Many people know that chemotherapy treatments can cause profound tiredness, but they may not realize that fatigue can persist in some survivors for years. Were not entirely sure, but it may be due to unchecked inflammation in the body, says Dr. Patricia Ganz, a professor at UCLA School of Medicine. Treatment could possibly push the immune system into overdrive, and in certain patients, the resulting inflammation could increase fatigue as if the body were constantly fighting off a bad flu, Dr. Alfano adds.

Sound familiar? Why is CFS so marginalized when the symptoms of CFS are documented in patients with other diseases? Is it possible that in CFS we are seeing the chronic equivalent of a condition that is only temporary in other patients?

If CFS-like symptoms are witnessed in other patients, parallels might be drawn between the two. It may be that a retrovirus, or the bodys reaction to a retrovirus may begin to explain how a healthy looking person might become totally incapacitated.

I read of these cancer patients and learn of a commonality I have never heard before. In a way, its heartening because it makes CFS a little less lonely. Additionally, it suggests that when CFS-like symptoms are found in other patients, (patients who have a diagnosed, well-funded disease), it might be that better treatment options will be found for CFS itself. It may be that eventually, a CFS patient will no longer have to explain the dichotomy of looking good and being sick.

Comments

Wow, this is the first I've ever heard of cancer survivors experiencing fatigue for years after treatment. Why isn't this known? Or is it known and kept confidential within the cancer community?

What does the doc mean when she says "unchecked inflammation"? Why wouldn't cancer patients be getting checked regularly for this? How are these patients treated for inflammation or immune-system overdrive? All of these illnesses ought to be sharing palliative (or stronger) treatments...!

Sorry, I'm probably not expressing too well that this is a cool blog entry to read--I'm just so full of questions!!
 
Hey S.P. and Zoe! Yes, I had about one hundred more questions than answers when I wrote this, but I wanted to throw it out there anyway. Thanks for the feedback!
 
I just wanted to say that my Dad was sick for a couple of years. Each year when I went home I booked an appointment with his doctor to see if I could get her to diagnose him because I thought he had cancer. He was very fatigued and had numerous other symptoms. She told me each time he looked too healthy to be sick. She refused to do a colonoscopy. In the end, 7 weeks after I took him to see her the last time, he died of cancer.

We are not the only ones who don't look sick or sick enough to have something wrong with us. My Mom always tells me to not wear my make-up when going to see the doctor because I look too good that way. I don't know how many times I tell the doctors they should see me without make-up. Now I go without which makes me feel bad, but I find that they listen better that way. Terrible.

I did a study and when you did the questionaire if you had chronic fatigue because of cancer you were eliminated. Interesting.

I also remember reading something from Dr. Cheney(I think it was him) about heart patients getting surgery and still having issues when they should be feeling better, he wonders if it was like the body remembering being sick and not knowing somehow that it was better or remembering how to be feeling better. I thought that was interesting too.
 
Cruzgirl, thanks so much for telling your story. It is humbling to hear how other patients suffer due to a lack of a solid diagnosis, or an apathetic doctor, or a misinterpretation of the phrase, Do No Harm. Perhaps there is some consolation is in knowing we are not alone.
 
Cloud, I often think that the up and down, rollercoaster ride that is CFS is the worst part. We seem to get better only to get worse without ever really being able to trace the "whys". I've been in bed all day and have no explanation for the crash. I would explain myself, if I could.
 
Liz,

I'm so glad you wrote about the Parade article. It caught my eye, also, probably because I've had a cancer diagnosis while ill with CFS. I've met 2 individuals in CFS support groups with the lingering fatigue, etc. after cancer treatment. They were very ill and had to give up their former lives. One was into the arts, and the other person was a doctor. They felt cheated and confused because their doctors could not help them. Although relieved to talk with others who felt like they did, these individuals were dismayed to learn there wasn't any treatment (this was 7 years ago.) It reminded me of GWS and other toxic exposures leading to the same array of symptoms. How many pathways end as CFS?
 
Brown-eyed Girl,
Such interesting feedback! I do hope your cancer diagnosis is more treatable than CFS, but my heart goes out to you -- one disease at a time is enough!
You mentioned those patients who were "dismayed" by the lack of available treatements, and only last week I was contacted by a friend of a friend who was looking for a local doctor who treats CFS patients. I told him, there aren't any, really. Every local CFS patient I know goes out-of-state to see their doctors. Turns out this guy works for the CDC.
The facts of CFS are just too few and the resulting aggrevations/tragedies are almost not to be believed.
 
Liz, it's a year later since your post, but I read it with interest. What comes to mind, is that Ampligen was made for cancer patients. Hm.

Thank you for your clear writing style, and analysis.

Nico
 

Blog entry information

Author
Liz
Views
482
Comments
9
Last update

More entries in User Blogs

More entries from Liz