Sunday, June 12, 2011

The Chracter of CFS

Be more concerned with your character than your reputation, because your character is what you really are, while your reputation is merely what others think you are.

~John Wooden

In an earlier post I wrote that I felt like I had married into a dysfunctional family.  CFSers are yelling at each other demanding that we see things their way for whatever reason.  If we don't buy into their belief system we get yelled at.  Is this anyway to treat each other?  I don't like it.  It isn't helpful to me.  It makes me want to withdraw and not post here or on Facebook because I don't want to incur someone's wrath.  The stress makes me feel worse than I already do and I can ill afford that.

We each have our own beliefs surrounding our illnesses.   How we became ill.  What made us sicker.  What made us better.  I've heard everything from "drink raw milk" to "take antivirals" to "do nothing".  People are desperate. 

Because our illness beliefs aren't the same we also don't believe in the same cures.  Not having a scientific understanding of our illness doesn't help.  We don't know for reals what is making us this sick.  A virus?  A genetic defect?  Something we haven't discovered yet?  So everyone is left guessing including myself.  We are guessing at the cause, the how, the why.  We can't even settle on a name.  There is no consensus even among the experts so how can we, the laypeople, presume to know more.  I'm smart.  I used to work at MIT but I don't have a degree in virology.

Instead what I am finding is that a doctor has a theory; they put everything they have into that theory, research dollars and reputation and ego; they write papers/books; the sick, desperate for answers, read everything.  This is understandable.  I do it myself.   However, here is the kicker, each patient decides at some point which professional is correct.  They then join that doctor's camp and proceed to shoot arrows at everyone else.  Professional or patient it doesn't matter if you aren't in the same camp you get shot at.

I understand why this happens.  People are angry.  People have been abandoned by the medical community and family alike.  I get it.  However, I choose not to participate in this shooting match.  I have my own beliefs.  I'll continue to write about them here but I am probably going to continue to withdraw from Facebook CFS related stuff.  My blog isn't widely read and my readers seem to be the kinder sort.  Luckily I'm not part of the Twitterverse yet so I haven't become embroiled in any of those battles.   I'm too sick to participate in any of the negative stuff.

I am making a conscious decision not to shoot arrows.  I don't want to live a negative life.  I don't want to live a life arguing to defend anyone's camp.  It is too early in the scientific game to choose sides yet.   We don't have enough answers.  There is an old saying "you catch more flys with honey than vinegar".  I want to live a positive life.  I think we can do far more good by being kind and considerate and this applies to everyone, patients and professionals and even journalists.  I don't want to come across as angry pissed off person demanding stuff.  I can refuse but I can refuse in a polite respectful way.  This keeps things cordial and open for further negotiations.

So I am left with questions:
What do I want to do with my days?
How do I want to interact with the CFS world?
How much do I want to interact with the CFS world?
How much and what type of advocacy do I wish to participate in?

Guiding principles:
Do no harm: This includes patients, doctors, scientists and journalists.
Do not spread rumors.
Do not post anything that is unsubstantiated.  (backed up with verifiable medical evidence)
Clearly list when something is my opinion rather than fact.
Clearly state when I'm guessing.
Do not participate in pissing contests.
Do not post inflammatory articles or comments.

If you are curious, I'm currently in Dr. Bell's camp.  I believe CFS has a viral etiology.  I believe that virology is in its infancy as a science.  I believe most of what we know about viruses has come directly from the world of AIDS research which may not be applicable to CFS.  Due to my minirecovery while on steroids I believe there is a strong inflammatory component to my symptoms.  This would also explain that anything we do to reduce inflammation makes us feel a tad better.  I am guessing that our cure may include both an anti-inflammatory and an antiviral or antibacterial treatment.  My belief right now is that I have caught a virus and it is causing inflammation in my brain and/or spine which is resulting in my symptoms.   However, without any science to back me up I could be totally wrong. 

I also believe that if I live a joyful life I have a better shot at recovery.  I also refuse to become a bitter old crankpot.  Life has too much joy in it.  There is too much good in the world for that.  So, I'm going to try to lead a more positive life.

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