This year I went to the Joslin Diabetes Center, a new patient presenting with a glucose level of 570. I was seen by a Fellow, then the attending, Dr. Kelly. I had googled “CFIDS + glucose” and found several recent articles but they were at a medical level that I could not understand. I begged the doctors to do the literature search and inform themselves. They promised they would, then scheduled me not to come back for two months. A patient presenting with a glucose level over 500 and they’re not going to do anything for two months? If that’s not patient abuse then what is?
When I returned two months later, the Fellow handed me two mass-media articles on chronic fatigue. She had not searched on CFIDS + glucose. She had not done the search until a few hours before my appointment. She admitted she had not read the articles. Dr. Kelly never saw me again.
During the two months I waited for the physician, I found—
• Dr. David Bell, who was on staff at SUNY Buffalo, did primary research with Dr. David Streeten at SUNY Upstate, and was appointed by the U.S. HHS secretary to chair the CFIDS advisory committee.
• The International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis, which published the “ME/CFS Primer for Clinical Practitioners” in 2012.
• Dr. Sarah Myhill’s “Diagnosing and Treating Chronic Fatigue Syndrome.” Practicing in Great Britain since 1982, she has treated about 5,000 patients who have chronic fatigue.
There is literature out there; Upstate physicians will not look at it.
I went to Upstate’s Adult Medicine Clinic to get a new primary care physician. I was asked to sign a release of all my records, which I declined because they contain incorrect diagnoses. The NYS Dept. of Health advises me that there is no way to correct the records. I would be a fool to release information that would prejudice the physician against me. Dr. Peter Cronkright bullied and harassed me about releasing the records. You don’t know how some male physicians treat female patients who are unaccompanied. He said they only treat patients who release their records; that’s just the way they work, so he refused to accept me as a patient. It was only later that I went back and read the release form. It says that treatment will not be denied if the patient refuses to sign the release.
Dr. Eastwood, your physicians are out of control. They only will treat patients who are docile and compliant, not patients who stand up and fight. Do you remember that years ago a physician wrote a book stating that the patients who survive cancer are the ones who are the biggest pain in the neck, determined, demanding, and challenging? It’s not just the cancer patients. The survivors are all of us who fight back and demand the care we need.
I went to a primary care physician at the Syracuse Community Health Center on April 2. I have nephrogenic diabetes insipidus consequent to a physician not monitoring medication. That, in addition to stage 3 chronic kidney disease, has necessitated an indwelling catheter, which needs to be changed every 30 days. I have a urinary tract infection with bacteria colony greater than 600,000. The physician referred me to the Upstate nephrology clinic which did not schedule me for an appointment until July. Yesterday they changed the appointment to August.
Why is it that I can’t get a single physician at Upstate Medical Center to make a commitment to figuring out what to do about what’s wrong with me? All your hospital welcomes are easy patients. Why isn’t there anyone who will stand and fight with me, instead of against me? “Knowing changes everything.” I’ve got an I.Q. of 140 and my board scores were high enough to get me into medical school. You claim to provide education, biomedical research and health care. Why won’t you work with me?