PRESIDENT'S MESSAGE:
Important Reflections about Chronic Fatigue Syndrome


by Guest Columnist Alan Cocchetto 2002

     I am often reminded about the crucial fight we are undertaking when it comes to understanding,
validating, and finding truthful answers about Chronic Fatigue Syndrome(ME).   Numerous phone calls,
emails, and conversations with seriously ill patients have prompted me to write this column for the National
CFIDS Foundation to again expose what I, as well as many others, believe this disease to truly be.

    Let me begin by taking an excerpt from a CFS patient's medical documentation.  These documents came
from her own doctor; one who works at a large university medical center.  I have permission to reprint these
documents but will change her name to Ms. X. She has undergone extensive testing by two world reknown
ME/CFIDS physicians who will no longer see her!  She was recently seen by a large university based
hospital - one that receives numerous grants from the NIH to fund their scientists!   The university's
evaluation for this ME/CFIDS patient gets to the point and illuminates the true horror that this disease
actually is!  Below is the patient's actual evaluation quoted as written except with [underline] added to accentuate
critical information:

     I have been asked to evaluate Ms. X for follow-up of her idiopathic CD4
    lymphopenia.  Ms. X has a long and complicated history which has gone
    on for at least 10 years.  She has documented CD4 levels of less than 100
    since at least 1994.  Recent evaluation in my laboratory showed a CD4 count
    to be 50.  She has marked increase CD38 activation on her CD8 cells, complete
    expression of fas (CD95) antigen on all her CD4 cells, and shows evidence of
    marked depletion of her CD8 positive cells.  In addition, she has had auto-
    immune hemolytic anemia, splenectomy, and herpes zoster.  By all accounts,
    Ms. X has a T cell phenotype which is indistinguishable from the acquired
    immunodeficiency syndrome.  Of note, her tests to date have been negative
    for HIV-1.  We are looking for possible HIV variants, as well as other viruses.

 
    Recent cultures in our laboratories show that she does appear to harbor some
    sort of syncytium-inducing virus, however, we have not been able to identify
    it at this time.  It is my belief that Ms. X indeed has an acquired immune
    deficiency syndrome which is not HIV-1 related.  From all aspects and
    standpoints, including both clinical, laboratory and immunological course,
    her illness is indistinguishable from someone with advanced AIDS.  Please
    take this into account when referring her for possible help in her therapies.

In a later letter the same doctor writes:

    She has a variety of very severe immunological abnormalities including a
    CD4 count less than 50, severe episodes of apoptosis of her T cells and clear
    cut indication of low CD8 positive T cells.  In addition, her flow cytometry
    looks exactly like a patient with advanced HIV disease.   Clearly she is markedly
    immunosuppressed from an unknown illness.

                                                                                                         Doctor XYZ
                                                                                                         Immunology Lab
                                                                                                         Infectious Disease Unit
                                                                                                         Large University Medical Center

    
There it is, stated by a doctor at a large university medical center....a patient seen by the "best"
ME/CFIDS doctors....an illness that is indistinguishable from AIDS!  Of course I am reminded of Hillary's
Johnson's
book Osler's Web and her chapter titled "HIV-Negative AIDS."  How poignant her work was with
regards to all of this...the science...the politics...and the mess created by our government, the DHHS, NIH,
and the CDC in an attempt to dilute the truth!  Even one of Dr. Nancy Klimas' earlier papers mentioned CFS
and AIDS in the same breath though I haven't seen the same wording used in any of her recent publications.

    Given all that I have read scientifically, what do I think ME/CFIDS most likely is?  The mirror of AIDS
or AIDS with a twist!
  Rather than seeing 20% per year reductions in CD4 lymphocytes as in AIDS patients,
in CFS patients we see a mirrored reduction of 20% per year cell loss in the CD8 lymphocytes.  AIDS acts
like an aberrant leukemia/lymphoma....borrowing from the previous name HTLV-III (Human T-cell
Leukemia Virus) given it by Dr. Robert Gallo and adopted by other scientists.  Could CFS prove ultimately
to be the mirror of such an aberrant leukemia/lymphoma?  Absolutely!  Anyone who doubts this possibility
only needs to reference the work of Dr. Sidney Grossberg, whose "CFS virus" he is looking at has the cell
markers identifying it as a leukemia and whose CRISP database document mentions chronic fatigue
syndrome, leukemia, and lymphoma together!  If that isn't convincing enough, then retreat and read Dr. Paul
Levine's
recent work as well as his initial findings on the Tahoe outbreak.   Quoting Dr. Levine et. al. (J of
CFS Vol. 9, #3/4, 2001):

    "Regarding the possible association between CFS and cancer, our data do not have
sufficient numbers of patients to reach a conclusion. But it is of interest that our small  study group had
patients with Non-Hodgkin's lymphoma and brain cancer, both noted to be in excess in our earlier study of
cancer following the reported outbreak.  Also, the observation of patients with multiple primary tumors
suggests the possibility of cancer being an outcome of CFS in those patients with immune dysfunction."

    Given the fact that ME/CFIDS patients all have immune dysfunction (thus the "other name" for CFS:
CFIDS), this should not come as a shock.  Furthermore, it may be wise for us all to consider seeing an
oncologist for their independent medical evaluation and establishing a baseline for our given condition.

    We must continue to follow the most unbiased scientific truths we can find and move forward with
courage and dignity!  It is only there that we will find the answers to this devastating disease and finally
reach the true conclusion.  I greatly encourage readers to share this message with their doctors, families, and
friends.  Remember, I am saying nothing...the medical science speaks for itself!   True scientific research,
subsequent therapies, along with future education will collectively defeat this evil!   I am proud to be part of
the National CFIDS Foundation's efforts to learn the truths, provide answers, and to ultimately slay this
dragon.

The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 * (781) 449-3535 Fax (781) 449-8606