The Biblio File

Encounters with the Invisible: Unseen Illness, Controversy, and Chronic Fatigue Syndrome
 
Reviewed by: Robert Huntington
Author: Dorothy Wall
Publisher: Southern Methodist University Press
Price: $22.50
ISBN: 0-87074-504-2
 
The author has CFIDS.  But she was a writer well before she got sick and Encounters with the Invisible has so many mistakes that Dorothy Wall seems to completely rewrite history! 

     Sick for years (but never diagnosed), Dorothy Wall  asks The CFIDS Association of America (CAA) for "a crash course in CFIDS research and advocacy" and Kim Kenny McLeary and others at the CFIDS Association of America (CAA) are happy to oblige.  What came out was wrong and a total distortion of the truth in many areas, whether it was due to what information was given to her or how the author misinterpreted it.  The result is a book of fiction involving historical issues.  As a writer, Ms. Wall should know enough to check her facts. 

     Most of the book gives an endless account of how the disease remits and returns only to keep her bedridden.  Her adult daughter and her partner are there to wait on her but the book revolves around the trivializing name that the CDC bestows upon the disease and what evolved.  The problem is  that she intersperses her whole story and "the validity of the name-change debate" with highly erroneous statements that, instead of illuminating "the complex issues" only serve to spread misinformation.

     The authors very first sentence in the book sets the stage for her erroneous journey:  "When a strange, flu-like illness began it's insidious spread through the United States in the late 1970's and early 1980's..."  Although she quotes the carefully written and researched Osler's Web:  In the Labyrinth of the Chronic Fatigue Syndrome Epidemic (Hillary Johnson, Crown), it seems obvious she didn't read it.  If she had, she'd have known that the first medical journal to report on an outbreak of this illness happened in the 1930's and the "insidious spread" was worldwide.  She lumps CFIDS/ME together with "other controversial, perhaps overlapping illnesses" such as candidiasis and multiple chemical sensitivity when science now points to a much closer overlap with much more severe illnesses. 

     Dorothy Wall admits to "having difficulty holding more than one thought in my head, let alone remembering and organizing a whole body of information," so why did she write a book about things she knew nothing about and believe whomever she contacted for that information without verifying her facts?  The CAA is Dorothy's heroic group that fights hard to change the name, according to the book.  She states, "There's a lethal side to silence..." but she lethally writes with broad distortions and outright lies.  She writes that "investigator Gary Holmes, at the CDC (Centers of Disease and Prevention) and his associates, charged with naming a puzzling illness..." Whoa!  A committee was named by the CDC and they were not Holmes' "associates."  The committee included clinicians who had been diagnosing the illness for years and included Anthony Komaroff, M.D. and Nelson Gantz, M.D.  It also included several researchers including Elliot Keiff, M.D. an infectious disease specialist from Harvard Medical School and Alexis Shelokoff, M.D., Ph.D., a well known researcher.  Dr. Keiff, along with the other researchers, quit the CDC committee rather than attach their name to renaming what the committee members knowingly recognized as myalgic encephalomyelitis (ME).  He asked them, "Is the intention to create a new psychiatric classification?"  in case the other members weren't aware of what the trivializing name of CFS would do.  Indeed, even the author of the "Afterword" in this book, Nancy Klimas, M.D., has earlier stated, "It's an acquired immune deficiency."

     But Wall's inaccurate reporting gets far worse.  She relates a September 27, 1993 meeting of the CDC and mentions "the National CFIDS Foundation" saying they "bristle at the idea that the CFIDS Association adequately represents patient interests" and says their publications use words like "liars," "cheats," biased," and "useless" so "Kim Kenny knew this meeting was headed for disaster."  HOW COULD THIS HAVE HAPPENED?   The meeting was in 1993 and the NCF wasn't even founded until 1997!  In fact, when I questioned the NCF's president, Gail Kansky, about this, she verified that there was no NCF and that she, in fact, received an award from the CAA about this time.  She said Kim Kenny was not the president and CEO of the CAA in 1993 and further told me she, personally, never set foot inside the CDC!  Yet Wall depicts the National CFIDS Foundation as a "cloak and dagger outfit!" One board member told me he'd welcome more groups that fund research and really want answers to be put in that category!

     The distortions of facts continues.  The book says that "In 1994...one group contacted Senator Kennedy's office to convince him to get Congress to mandate a name change."  Wrong again.  It was February 16, 1999 (5 years later!) that three groups joined forces:  The Medical Professionals with CFIDS (MPWCs), RESCIND, Inc. and The National CFIDS Foundation to change the name to "ME" via a simple attachment to a bill they knew would pass.  This is done all the time.  Most attachments are commonly referred to as "pork."  These groups prepared a book of more than 100 pages of information including a survey taken at the October 1988  medical conference of the American Association of Chronic Fatigue Syndrome (AACFS) that showed the highest percentage of clinicians and researchers were in favor of the name of ME (the author claims only patients wanted the name changed).  The author claims these groups "were told this isn't what Congress does."  Wrong again.  It wasn't Sen. Kennedy's office that agreed to the attachment but Senator Harry Reid.  It was, however, the office of Senator Kennedy that referred these groups to Senator Reid. This was reported in The National Forum (Vol. 2, No. 4, Spring 1999) and tells quite a different story.  One NCF member keep in touch with Carolyn Slutsky, the head of legislative affairs at Senator Reid's office.  Suddenly, the name change was dropped because "others" informed them it was "not needed or wanted."  Our representative asked if Ms. Slutsky was referring to Kim Kenny and was told yes "and others from the (CAA) Association."  The title of the story from that Forum was "Name Change Sabotaged."  Yet this book depicts the CAA as the name change heroes!

    Of course, Dorothy Wall insists the name "ME cannot be used in the US as it is in Europe since "ME advocates in Britain...were adamant that CFS patients in the United States not adopt the name ME."  Utterly false again!  A petition that can still be accessed and signed online (http://www.petitiononline.com/MEitis/petition.html) that states, "To: United States Department of Health and Human Services, National Institutes of Health, and Centers for Disease Control
We, the undersigned, respectfully demand that Myalgic Encephalomyelitis (ME), an internationally recognized neurological disease, be also formally recognized as a distinct clinical entity in the United States by the National Institutes of Health and the Centers for Disease Control. It is time to make the case definition/diagnostic criteria explicit in the name..."
 
has been signed by many British Advocates including the heads of some advocacy groups there.  The book states "The CFIDS Association received the much-circulated petition demanding the recognition of ME, now with 3,500 signatures."  Why would the authors, the NCF and RESCIND, Inc., send the petition to the CAA?  And it wasn't "circulated" as it's been online since its inception!  And, by the way, it now has well over 7,000 names on it.  Check it out yourself.

     Is the poor and false information limited to just the NCF?  No.  RESCIND, Inc., who is known for the international recognition of May 12th as Awareness Day, is described as just one angry and out-of control patient who wants to change the name.  "The formation of a new advocacy group, the Myalgic Encephalomyelitis Society of America" is mentioned although that "group" consists of less than a handful of people and is only online.  While Wall complains that she is "outraged" that ME "wasn't adopted at the get-go, a move that would have saved hundreds of thousands of people untold misunderstandings and dismissal," she berates those who fought for that and inaccurately tells of those who denied us this action.

     The author admits she "began scribbling notes for this book in the fall of 1997" just months after the NCF was founded!.  She complains that "CFIDS research had stagnated."  She omits the fact that the CAA had not put forth even a penny for research that year.  Or in 1996.  Or 1998.  Etc.  It was one of the many reasons that the NCF was formed!

     The book ends with Dorothy Wall being much improved and more physically functional although still with limitations but she has "a life, in fact, a good one."  So why couldn't she check her facts and get them right before getting her book published?  Is there a reason why K. Kimberly McCleary says the book has "wise observations?"  Did Ms. Wall misinterpret the facts or were the facts given to her erroneous?  Makes me wonder...  Meanwhile, I'm using the pages of this book to line my finch's birdcage.
 
[Ed. Note: The MPWCs disbanded several years ago although many of that group have joined the NCF.  RESCIND's website can be found at http://www.geocities.com/CapitolHill/4277/.]