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The following information on finding a doctor is republished with the kind permission of the CFIDS Association of America.
How Do You Choose a Doctor?
This is especially difficult when you have (or suspect you have) chronic fatigue and immune dysfunction syndrome (CFIDS), also known as chronic fatigue syndrome (CFS).
More doctors are recognizing the symptoms of CFIDS. Understanding and acceptance of the illness is slowly growing within the medical profession. Still, finding a health care provider who is knowledgeable about CFIDS can be difficult. Many health care providers have difficulty diagnosing CFIDS and some do not even know that the illness exists.
At this time, no specific medical discipline has “claimed” CFIDS, its diagnosis or its treatment. So although it is unfair, CFIDS patients often have the responsibility of finding a knowledgeable health care provider. This pamphlet offers some basic guidelines to consider when choosing a doctor.
Starting Your Search
Educate yourself thoroughly about CFIDS and be on the lookout for health care providers who have done the same.
Your primary care provider
If you already have a good relationship with a health care provider, you should urge him/her to develop an understanding of CFIDS. Educate your doctor by providing him/her with literature about the illness. (See Educate Them.) Initially, you may be answering more questions for your doctor than he or she is answering for you.
Local support groups
CFIDS support groups may be able to guide you when looking for a health care provider in your area. You can get a list of local CFIDS support groups from The CFIDS Association - send an e-mail request including your postal mailing address to:
cfids@cfids.org or a self-addressed, stamped envelope to: The CFIDS Association of America, PO Box 220398, Charlotte NC 28222-0398, ATTN: Support Groups. All requests will be filled by mail.
Everyone else
Other persons with CFIDS, friends, relatives, neighbors, coworkers, nurses, support group members - everyone is a resource. Keep in mind that many people choose health care providers according to “personality” and opinions differ among individuals. Most people are not qualified to characterize a doctor as competent or incompetent. However, compassion and understanding, good “bedside manner” and an open mind are qualities that count in a health care provider... especially when treating a chronic illness like CFIDS.
Gather Information
Before you contact the health care providers you are interested in, you can get some basic background information about them. For example: Are they licensed? Are they board certified? Have they ever been sued for malpractice? At which hospital(s) do they have privileges? Are they in your insurance plan? Do they accept Medicaid/Medicare (if applicable)? A list of resources you can use to gather this information is found on page 4. (See Give Them a Check-up.)
Call Them Up
Next, call the offices of the providers who meet your criteria and speak with the office managers. Find out how they feel about CFIDS. Say, “I have (or may have) CFIDS (or CFS), a complex and debilitating illness, and I’m looking for a health care provider. Is the doctor familiar with CFIDS? Does he or she diagnose CFIDS? Does he or she treat CFIDS? How many CFIDS patients does he or she have?” There may be other questions you want to consider asking as well.
Educate Them
Provide your doctor/nurse with as much information as you can. There are thousands of CFIDS studies published in medical journals, if he or she seems to lean toward peer-reviewed literature. Several studies are available from The CFIDS Association of America. The Association also provides a medical information packet to doctors at no charge. This packet provides excellent resources for health care providers who are learning how to care for CFIDS patients. To send this information to a doctor, send your request by e-mail to webinq@cfids.org
Give Them A Check-Up
There are now many ways to check up on physicians anywhere in the country. You can go to your local library, check with a physician referral service or surf the Internet. Below are additional options.
Your insurance plan
Call your health insurer first to find out which health care providers are in your plan. Most Americans now have a limited number of providers they can see. If there aren’t any suitable doctors in your plan, find out the plan’s policy if you go “out of network.”
American Medical Association (AMA)
Department of Physician Data Services
515 N. State Street
Chicago, IL 60616
Website: www.ama-assn.org
Through the AMA you can find out about a doctor’s educational background and areas of medical specialty and whether or not the doctor is a member of the AMA. You can also check the American Medical Association Medical Directory at your local public library or bookstore.
American Board of Medical Specialties
47 Perimeter Center East, Suite 350
Atlanta, GA 30346
800/776-2378
Website: http://certifieddoctor.org/
This organization will tell you whether a doctor is board certified or board eligible in a particular area. “Board certified” means the doctor has completed two additional years of training and passed a national examination. “Board eligible” means that the training, but not the test, has been completed.
Medi-Net
Toll-free: 888/275-6334
Website: http://www.askmedi.com/
For a fee* Medi-Net accesses databases from the AMA, three federal agencies and all 50 state medical boards to provide basic background information on a doctor and whether he or she has been disciplined for billing fraud, overprescribing, incompetence or another offense. *$14.75 for one doctor when ordering from the website ($29.99 when calling).
When You Go to the Doctor...
Exercise your right to receive appropriate medical care, but respect that office visits do have time limits. Be prepared for your visit with a list of your symptoms and medications - many PWCs find that keeping a symptom diary helps them talk to their doctors better. Ask questions and answer questions fully. Write things down. You might even want to ask permission to audiotape the visit.
Remember, doctors are people too. All are fallible, and no one doctor can possibly keep up with all the new medical information coming out. Doctors, like the rest of us, have personal opinions and attitudes. They can’t be totally unbiased or free of pre-judgments. If your doctor can’t deal with your real medical problems, seek help elsewhere.
With thanks to Camilla Cracchiolo, RN; Thomas B. McCall, MD; and K.H. Cherry. Published and distributed by The CFIDS Association of America ©2000. Some of the information contained herein is intended to help persons with CFIDS (PWCs) make informed decisions about their health. For specific advice, please consult with your health care provider.
The CFIDS Association of America, Inc. is the nation’s leading 501(c)(3) charitable organization dedicated to conquering CFIDS by supporting education, public policy and research. Our mission is to conquer CFIDS. All funds contributed to The CFIDS Association of America for a specific, valid CFIDS purpose are so allocated - 100%.
Rev. Jan. 2000
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