Change Is In the Air! An Editorial
Many of us are familiar with the endless trek from doctor to doctor to doctor trying to find an answer, a cure, an alternative treatment, something/anything, to this god-awful disease that has kept us home-bound and sick and doesn't go away. I have been at the receiving end of the Association's 800 number for almost four years and I've heard the stories over and over again as though they were one. I've talked to hundreds of people. I've heard the search for words and the struggle for descriptions as we try to explain the fatigue, the brain fog, or the overwhelming exhaustion that happens when we try to accomplish common household chores, (God-forbid we try to raise children). I hear about the headaches and repeated sore throats, the terrible joint pain, the restless anxiety and the non-restorative sleep. And then I hear about the doctor's visits. How after months of investment in a physician and months of tests that turn up negative, chronically ill people are sent-packing with nowhere to turn, nowhere to go and more questions than ever before. "It's all in your head." "You just need some exercise." "There's nothing I can do." "Go home and rest." (As if there were a choice.) "You're lazy."
I hear the stories as if they were one.
Occasionally I hear a spark of hope. But then, even when I do learn of a physician with insight, compassion and a willingness to explore treatment options, he or she is invariably outside the realm of traditional insurance, and might as well be on the moon to patients who have lost their job and exhausted their savings after years of being ill. Within the confines of managed care in Vermont I don't think there's a single physician, not even one, who has even an elementary grasp on the recovery process with CFIDS. If you can show me to be wrong, please call or write. Please.
Then there are the physicians who claim to have an understanding of this disease, who readily share this knowledge with their cohorts, but then have closed their practices to any new CFIDS patients. Then when asked for referrals, they send desperately ill people out of state, where after the most horrendous of runarounds they're discharged with the same litany of excuses. Every time this happens, and I mean EVERY time this happens, the symptoms are exacerbated and the disease is substantially prolonged. These actions make people worse.
One of our more pressing needs is to educate physicians in Vermont. We need to teach as many as will listen that this disease is real, it's debilitating and it's prolonged. We need to show that while there currently is no known cure, there are many effective treatments and people's health can be improved. Proper diagnosis is just the beginning. Recovery requires recognition, attention to dietary and nutritional protocols, blood work that focuses on specifics, and substantial lifestyle adjustments. This takes direction and requires a partnership between the doctor and the patient. We need partners.
Our goal is to have a list of physicians who understand this disease, who have a grasp of the recovery process and who are readily available through conventional insurances. Why should this be so difficult?
We began this process in January by introducing legislation that directs the Vermont Department of Health, in conjunction with the VT CFIDS Association, to educate the medical community about CFIDS. A copy of our bill is on page four. We are indebted to Rep. Patricia Doyle of Richmond who introduced this bill and is our guiding force. We also owe special thanks to Reps. Jim McNamara of Burlington and Anne Pugh of So. Burlington.
Since then, we have received a copy of an internal letter from the Commissioner of Health that agrees to our request! (See page 5.) As a result, the legislation has been put on hold, and we have initiated a dialogue with the Department to fulfill our requests. Anyone who wants to be a part of this process is welcome, your input is imperative. We can make a difference.
Change is in the air.
The longest journey begins with a single step.
From the Commissioner of Health...
The following is excerpted from a memorandum to Rep. Paul Poirier, Chairman of the House Health and Welfare Committee, from Jan K. Carney, MD, MPH, Commissioner of the Vermont Department of Health regarding Bill H.594 - Chronic Fatigue Syndrome.
This is being printed with permission from Rep. Poirier.
January 25, 2000
"In follow up to my testimony last week regarding(this) bill, the department of Health can provide public and professional information on (this) issue. While not carrying out every detail of the proposed legislation, we will attempt to address the intent and spirit of (this) proposal. In the area of chronic fatigue syndrome, we will work in collaboration with the Vermont CFIDS Association, Inc., along with health care providers with expertise in chronic fatigue syndrome to provide information to the public and also to health care professionals in Vermont. This would include information from the Centers for Disease Control and Prevention, specifically their web site, to provide health professionals with current research and guidelines for chronic fatigue syndrome.
Such information could go out through our existing publications or the creation of a fact sheet that includes the web site for CDC, and phone numbers for individuals who wish to participate in available support groups. In addition, the Department will work closely with such professional organizations as the Vermont Medical Society and the Vermont State Nurses Society such that this information could be integrated as part of any continuing medical education efforts.
We would see these educational efforts occuring within our current budget and responsibility located in our division of Health Improvement. The committee's idea of a resolution in (this) area is an excellent one and would help to further focus public attention in (this) area.
It's a Crazy World!
In the political world of disease, for some unearthly reason, CFIDS has been treated as a joke by the Centers for Disease Control (CDC) and the National Institutes of Health (NIH). Derogatory fabrications about this disease were actually taped to the office walls of some of the top level researchers at the CDC. Valid research was ignored, project grants were repeatedly denied, and to be involved in CFIDS-oriented study has been the kiss-of-death for career-minded physicians and researchers. For years on end, money authorized by Congress (because of the outcry of their constituents) for research into CFIDS was diverted to other projects at the whim of high powered bureaucrats. Recently the CDC admitted diverting millions of dollars away from CFIDS studies as a pattern of behavior. They apologized. The following letter was sent to Vermont's Congressional delegation last October. This in turn is followed by Senator Jefford's response.