I'M READING DOROTHY WALL'S BOOK ON CFS

Discussion in 'Fibromyalgia Main Forum' started by rockgor, Aug 30, 2006.

  1. rockgor

    rockgor Well-Known Member

    Dorothy Wall is a writer and teacher. She came down w/ CFS in 1980 following a bout of mononucleosis two years earlier.

    The book is both her personal story and a history and discussion of the DD. Published 2005.

    She says there are tests to document CFS. It's just that doctors don't do them. For example, a blood test developed in Belgium shows an abnormal enzyme (RNase-L) in CFS patients.

    And blood flow tests show we are not getting enough blood flow to the brain.

    SPEC scans of the brain show CFS patients and AIDS dementia patients look similar; very unlike healthy brain scans.

    An afterward by a doctor says CFS involves problems in the brain, the immune systen, the neuroendocrine system and the autonomic nervous system.

    (Well no wonder it's complicated.)

    Thanks to KHolmes for recommending the book.

  2. kholmes

    kholmes New Member

    Glad you're reading ENCOUNTERS WITH THE INVISIBLE. I learned a lot about CFS that I didn't know, and I found her writing superb.

    I didn't realize there were many tests that reveal physiological markers for CFS, but many of them are expensive and are not covered by insurance. Plus, as my doctor often says, "what would we DO with the information?" I would still like to do them, though. For one thing, the information would help with long-term disability claims.


    One of these days, I'm going to tackle OSLER'S WEB. In fact, I may just put it on hold at the library today.

    Changing the subject, have you read THE BACHELOR BROTHERS' BED AND BREAKFAST?

    Ken
  3. LittleBluestem

    LittleBluestem New Member

    “An afterward by a doctor says CFS involves problems in the brain, the immune systen, the neuroendocrine system and the autonomic nervous system.
    (Well no wonder it's complicated.) ”

    And he still left out the problems in the energy metabolism system.

    O.K., I added “Encounters with the Invisible” to my ever-growing CFS reading list.
  4. ulala

    ulala New Member

    My doctor has been testing for chronic Lyme disease using this type of brain scan.

    It involves nuclear medicine and they told me it takes about two hours.

    He said it shows how blood is taken up in the brain. I don't know how he can determine Lyme from CFS but hopefully I'll find out soon.

    The FFC uses the RNase-L test. I know I had it done, I'll have to look at the results.

    I'll post after I get my results from the brain scan.

    Thanks for posting about Dorothy Wall's book!
    [This Message was Edited on 08/31/2006]