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Finding a Doctor for Chronic Fatigue Syndrome

The Burden is On You

By

Updated October 11, 2012

First Step: Educate Yourself

The more you know about chronic fatigue syndrome (CFS or ME/CFS), the better prepared you'll be when trying to find a doctor. It's a difficult process, and you may need to educate a few health-care professionals along the way. Be sure you know the list of symptoms and become familiar with the various ways ME/CFS is treated.

The crux of the problem is that no medical specialty has "claimed" ME/CFS, so finding a knowledgeable doctor isn't as easy as with most illnesses. Even fibromyalgia, which is considered closely related to CFS, falls under the auspices of rheumatology. Chronic fatigue syndrome is not well understood, and many health-care providers have a hard time recognizing it. Some don't even believe it is an actual condition.

All this means that the burden of finding someone qualified to treat you falls squarely on your shoulders. However, you have a number of resources to use in your search.

  • Your primary care provider
    If your regular doctor isn't well educated about ME/CFS, see if he or she is either willing to learn or knows of someone who's more knowledgeable.
  • Other care providers
    If you see a physical therapist, massage therapist or chiropractor, ask who he or she would recommend.
  • Local support groups
    People involved in local support groups likely will be able to recommend qualified doctors. To find a support group in your area, you can check with your doctor, local clinics and hospitals.
  • Advocacy groups
    ME/CFS advocacy group websites may be able to help. Check out this patient-recommended "good doctor" list from Co-Cure.
  • Friends, family and associates
    Talk to everyone you know to see if they can recommend a doctor, or whether they know someone with ME/CFS who may be able to recommend one. While most people aren't qualified to say whether a doctor is competent, they can tell you whether he or she is compassionate, patient and willing to go an extra mile for you.
  • Referral services Check with local clinics and hospitals to see if they have referral services. Also, call your insurance company to see if they have any doctors listed as specializing in ME/CFS.

Give the Doctors a Check-Up

Once you've compiled a list of doctors in your area, you can verify their credentials at the American Medical Association's DoctorFinder website. Also, see which ones are covered by your insurance plan and who accepts Medicare/Medicaid (if applicable).

Next, you can call the offices of doctors still on your list and talk to the office managers. Tell them you have (or believe you have) chronic fatigue syndrome and ask what kind of experience the doctor has diagnosing and treating it. You may also want to ask how long it will take to get an appointment, and whether you'll be able to speak to the doctor when you call with problems or questions.

You'll also want to find out whether the doctor is accepting new patients, if the office will accept your insurance (and vice versa) and whether payment or co-pays are due at the time of your appointment.

Meet with the Doctor

Before making a final decision, you might want to consider a "get acquainted" appointment where you can meet the doctor face to face, ask more questions and get a feel for whether this is someone you'd like to work with. Managing chronic fatigue syndrome requires teamwork between the doctor and patient, so it's important for you to have a positive relationship. If it's not possible to meet this way, treat your first appointment in the same way so you can decide whether this doctor is a good fit for you.

Sources:

2007 ProHealth, Inc. All rights reserved. "Fibromyalgia & Chronic Fatigue Syndrome Community Doctor Referral"

2002 - 2007 Hearthstone Communications Ltd. All rights reserved. "Your Rheumatologist"

2007 Spondylitis Association of America. All rights reserved. "Locating a Rheumatologist"

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