Department of Health and Human Services
The Federal Government of the United States of America
April 29, 1998
My name is Jill McLaughlin and I am with the National CFIDS Foundation. I
am here because of my daughter Amy who just turned 15 but has been sick
since she was 8 or 9. It took us a year to get a diagnosis during which
time we went to numerous Boston specialists. We were told repeatedly that
there was nothing wrong with her to which we replied "yes there is
something wrong you just can't happen to find out what it is". She had missed 45
days of school in fifth grade, and at a meeting with the school principal she
mentioned CFS. I remember my reaction was, "But she is not tired, she is
We finally found a doctor at Children's Hospital who made the
diagnosis. We were very relieved at the time thinking she would take the
summer off to recuperate and she would be fine. By the sixth grade she was
not fine and was unable to attend school even part time. Mid- year we were
notified that the school had contacted the Department of Social Services
and threatened to file a 51A - child abuse and neglect.
I was stunned. Luckily we got in contact with the patient organization to
help explain that we were not neglecting her medical condition, and indeed
there were no treatments, and then we contacted a lawyer. Later that year
there were suspicions that we were "encouraging illness behavior" and The
school system demanded a full psychiatric evaluation, which came back that
there was no evidence of depression or family dysfunction. I then
contacted a member of the school committee and the town manager to appraise them of
If this is what happened to us - my husband is a doctor and I have a degree
in biology, as well as our having some local political connections, what
must happen to others. Many people would believe if a doctor said there is
nothing wrong with a child. Think of the devastation that would cause.
Recently my 85 year old aunt moved in with us. She has been diagnosed with
early Alzheimer's, has cataracts, and arthritis, yet she is more
functional than Amy. I have been canonized by friends and family for taking in my
aunt, even though we have help and support from VNA elder services. In
contrast, for Amy, I am trying to play doctor, nurse, teacher, psychologist
and best friend but to most I am merely defending my crazy kid.
Amy has never attended middle school. She has a home tutor but has significant
cognitive problems especially with concentration and memory. She told me
that her greatest concern - more than her general health, which is
deteriorating, or pain she suffers daily - was her difficulty learning.
This is why I was initially excited about a patent that a patient sent me
entitled Composition for the treatment of CFS, which the government owns.
The invention describes peptide T which activates protein kinase A to
enhance cognitive function. I am aware that a patent by no means implies
that this is the magic bullet, but it sounded fairly benign and worth
looking into. Perhaps Dr. Satcher could find out further information on
what subsequent studies have been done and the outcome.
There was a disturbing description in the abstract which states "The invention relates
to a method of treating CFS not associated with HIV infection" which sounds
much like a description of HIV negative AIDS, as many have suspected.
It states "Patients meeting the diagnostic criteria for CFS, that is,
patients between the ages of 18 and 60, demonstrating at least a 1SD
impairment on 2 cognitive function domains or a 2SD impairment on 1 domain
after 3 sequences of reputable tests described below, having a Human Herpes
Virus (HHV) PCR signal > 1.5 standard deviation above the control mean,
having a Karnofsky performance status of <80%, having a fatigue score >50,
and a vigor score <50 on the profile of mood state POMS tests." It also
notes that "Each patient was positive for HHV-6 but negative for HIV." The
conclusion was that peptide T produces both functional and symptomatic
improvement "without changing the underlying viral infection."
The diagnostic criteria was being utilized by federal researchers 1 year before
the CDC published its revised symptomatic case definition in 1994. Another
government owned patent entitled "HHV-6 Isolution and products" states
"The presence of HTLB antibodies is increased in the following disease groups
but the invention is not limited to these specific diseases" For example
Hodgkin's, Burkitts lymphoma, ALL (acute lympocytic lukemia)...and "A newly
described infectious disease syndrome, similar to that seen in Lake Tahoe,
characterized as acute mononucleosis like syndrome in adults, commonly
known as CFS."
It seems that the federal government had adopted its own position on this
illness, but is telling the American public something quite different. It
is unconscionable that patients who are very ill have to search for
information and potential treatments and try to educate the very people
whose job it is to protect them.
There is a large well funded well established patient organization made up
of healthy paid professionals and Public Health Service whose job is to
alleviate suffering and safeguard the public health, yet we've been
subjected to deceit, denial and dissembling. I don't expect miracles but I
do expect honesty. Patients are still suffering, mainly due to their
inability to access adequate medical care and social support. Others are
dying or committing suicide - not from fatigue or stress or depression or
deconditioning, but from negligence and apathy.