Friday, January 25, 2008

Thoughts on Thought

There's another "change your way of thinking" therapy for CFS being touted in British newspapers, which looks like a pyramid scheme, because every one of the interviewees has gone on to become a practitioner.

But, as one of our many British activists points out, "If psychological therapy cures you, you did not have ME in the first place."  ME -- the original CFS as described in the Incline Village epidemic -- requires an infectious onset.  You can't cure a virus by talking about it, or by changing your thought pattern to "I am well, I am healthy, I feel terrific".

The problem is, too many ill-informed doctors have mixed up Chronic Fatigue SYNDROME with plain old chronic fatigue, which can have psychological origins, or be caused by another medical condition.  Their patients are misdiagnosed, which benefits no one: the patient never gets the right treatment to get back to work, because the doctor has (a) given them a wrong diagnosis and (b) generally believes that there is no effective treatment for CFS.

There are effective treatments for CFS, but they are not the anti-depressants that most such confused doctors push at patients.  Several anti-virals are in the research stages, which have shown good results. 

If you can't get into one of those research trials, the first step is to fix the quality of sleep.  CFS patients generally linger in the lighter stages; you need something that will get you into the deeper stages of sleep where healing takes place.  Be aware that some "sleeping pills" are little more than knock-out drops; they'll render you unconscious for 8 hours, but won't get you down to Stage 4 sleep.  After much experimentation, we've found that I need to mix a standard sleeping pill (to put me to sleep) with a prescription pain pill (to control the pain enough so I can get into Stage 4, and not just lay there with my eyes closed).

This does not mean that CFS=insomnia.  It means that poor sleep makes many medical conditions worse, even though it's not the initial cause.  When you're getting good sleep, your body can start to heal itself.  Your immune system gets stronger and starts to control the virus.

But the only "thought process" that has been shown to work for ME/CFS is the one Ellen Goudsmit has researched: pacing.  You change your thought process from "must do everything that needs doing" to "must take care of health even if everything doesn't get done".

When I first read the cardiopathy research ( and started thinking of myself as a heart patient rather than a CFS patient, I realized that no one would fault a cardiac patient for resting; they don't have to prove they're sick-not-lazy.  That made it easier for me to justify a cleaning lady on a regular basis -- if I was diagnosed with a heart condition, people would scold me for trying to do my own cleaning and stressing my heart, so why not leave the heavy cleaning to a healthy person? 

Just the change of giving myself permission to let things go made a big difference in my health.  I'm now resting enough to get healthy, instead of constantly pushing my limits and getting sicker.  Or, as Ellen calls it, "pacing".

But the improvement in my health comes from the increased rest, not from thinking differently about my symptoms.

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