Testimony to the U.S. Congress CFS Coordinating Committee
April 29, 1998
The following testimony was on behalf of The National CFIDS Foundation Inc. Presented to the Chronic Fatigue Syndrome Coordinating Committee.
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 sick." We finally found a doctor at Children's Hospital who made the diagnosis. We were 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 organisation 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 the situation. If this is what happens 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 it 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 canonised 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 one 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 Lymphocytic 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 organisation 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. Their blood is on your hands.
Alison Hunter Memorial Foundation
PO Box 6132 North Sydney 2059 Australia
Phone/Fax +61 2 9958 6285
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