written to Vermont State Senators
in support of H.881, Senate Appropriations,
a resident of the State of Vermont residing in Rutland County, as a
member of the Chronic Fatigue Syndrome Advisory Committee ( a Federal
Advisory Committee of the United States’ Department of Health
Services), and as a Chronic Fatigue Syndrome Continuing Medical Education
Provider for the Centers for Disease Control, I urge you to keep the
language of Appropriations Bill H.881 “An Act relating to Chronic
Syndrome” which would support the creation of a physician’s
the diagnosis and treatment of Chronic Fatigue Syndrome and distribute
copy to every physician practicing within the State of Vermont.
Chronic Fatigue Syndrome (CFS) is a debilitating illness now estimated
affect 800,000 Americans. The cause of CFS is unknown. There is no known
treatment for CFS. There is no known medication for CFS. Approximately
1/3 of the patients with CFS will improve within 5 years. The remaining
2/3 of the patients with CFS have a life-long disability so severe that
they cannot work or conduct meaningful lives. CFS knows no socioeconomic
bounds. It affects the wealthy, the middle class and the poor. CFS is
found in all countries of the world with an incidence of somewhere between
3 to 5 percent of the populations.
My interest in CFS is personal. My daughter has CFS and has had CFS
14 years. Originally diagnosed by me as having CFS, it took physicians
nearly two years to reach the same conclusion. My daughter was diagnosed
as having CFS by physicians in Newark, NJ and in Boston, MA –
metropolitan areas. Were she to have lived in a more rural area, the
probability of her condition being promptly diagnosed would have been
Although I am originally from NJ, I am currently a VT State resident.
Several years ago, I began inquiring as to the status of CFS treatment
the State of VT. I was referred to the medical school in Burlington
(UVM). Starting in the Office of the Dean of Education, I was referred
from Department to Department until I finally was told by an
Endocrinologist that CFS, “simply does not exist in the State
The endocrinologist was and is wrong. CFS exists everywhere. Why then
would you have a patient population that formed a Vermont CFIDS
Association? (CFIDS is another name for CFS.)
What the endocrinologist’s statement indicates is the dramatic
desperate need for education of physicians within the State of Vermont
about CFS. The 3 to 5 percent of Vermonters who have CFS are entitled
an accurate diagnosis and the best possible treatment even if that
treatment is mainly symptomatic.
As a member of the CFSAC, I have advocated for a national physicians’
manual for the diagnosis and treatment of CFS. It is not going to happen.
Despite the efforts of the members of this Advisory Committee, the CFSAC
has not met in 7 months. We have requested to meet every 3 months.
Clearly, HHS has lost interest in CFS, has made CFS a lower priority
other issues, or feels that they have paid sufficient attention to CFS
allowing the Advisory Committee to make recommendations to the U.S.
Secretary of Health.
The State of New Jersey has produced and distributed a Physicians’
to all physicians within the State of NJ. That Manual serves as a
reference for primary care physicians within the state. It also serves
a guide for patients. Patients refer to the Manual and, in some cases,
discuss the contents of the Manual with their physicians. Similar efforts
to produce such a manual are now underway in the states of Florida and
As the lead author of the New Jersey Manual, and co-author of two
additional chapters in the Manual, I have obtained (copyright) permission
for the State of Vermont to use the contents of the NJ Manual. Moreover,
I will personally oversee the modification of the content of the Manual
that it is appropriate and accurate for the practice of medicine within
the State of Vermont.
I ask for your support of this legislation.
Thank-you for your attention.
Sincerely yours,Kenneth J. Friedman, Ph.D.
Research Associate, Green Mountain College
Associate Professor of Pharmacology & Physiology, New Jersey Medical
to: The Vermont CFIDS Association, Inc.
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am writing to encourage you to keep the language about Chronic Fatigue
Syndrome( CFS) in H881, the budget bill. This bill provides a modest
sum set aside to increase the knowledge of CFS in primary care providers.
I am a 52 year old Family Practice M.D who practiced medicine in Williston
for 17 years before I became disabled by CFS. I am well aware of the
ignorance that my colleagues have regarding this illness. When I went
through my 7 years of medical training at UVM in ‘80’s,
there was nothing even mentioned about CFS, except for a few derogatory
remarks about “yuppie flu”. No one knew anything about it
and fewer cared. Even in the most prominent Medicine (Harrison’s)and
Family Practice(Rakel) textbooks of the mid ‘90’s, 2000
plus page tomes , there is not even a reference to CFS in the index.
Only the pediatrics text( Nelson’s) included a 2 page write-up.
That means that most MD’s practicing now were never formally educated
on a devastating illness that affects up to one percent of the population.
In addition to simply lacking the knowledge base required to care for
these patients, an even more sinister result occurs. There is a certain
arrogance that develops in even the most conscientious medical school
graduate who has just spent 7 years learning about illnesses, often
80 to 100 hours a week, who just doesn’t believe that he could
have missed studying an illness that was really that important. What
results is a Dr. who just doesn’t believe his patient or thinks
his symptoms are the product of an over worked imagination. This causes
unnecessary pain a suffering and poor delivery of health care for these
Chronic Fatigue Syndrome patients are already undesirable patients in
the eyes of health care providers. Nobody really wants us. We have lots
of complaints about symptoms that don’t make sense. We take a
lot of valuable time. We require lots of paper work for disability,
social security and referral forms. We don’t get better. We appear
normal yet can’t go to work. Who wouldn’t be suspicious
of fraud? I once heard a lecturer talk about the current state of understanding
(lack of understanding) of CFS at Fletcher Allen Health Care grand rounds.
He finished his talk by saying,”Don’t send your patients
When I first became ill with CFS I knew very little about the illness
and the colleagues I sought out for health care knew even less. Not
only did they not know anything about the illness, they did not know
who to send me to who might. When I finally became so ill that I couldn’t
work, I discovered that the disability policy that I had paid premiums
on for 17 years excluded CFS. It took 3 years, 3 appeals and one lawyer
to finally get my meager social security benefits. I credit my present
MD, who is very knowledgeable in CFS, in guiding me through this process.
I could not have made it without his expertise, caring and support.
I would hazard a guess that fewer than 5% of patients with CFS get this
kind of support. I can’t imagine how they survive without it.
I can imagine their suffering.
Step number one in correcting this situation is to improve the knowledge
of those who deliver the health care to these patients. Appropriations
Bill H. 881 sets aside $20,000 to begin a process of educating primary
care physicians about CFS. It is long overdue. I urge you to support
to: The Vermont CFIDS Association, Inc.
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