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What if I have ME/CFS?

In 2012, the International Association for CFS/ME published an ME/CFS physician primer that also appears on the U.S. Department of Health and Human Services National Guidelines Clearinghouse website. Although designed for physicians, patients may find it helpful in understanding their disease. Also, patients may choose to print a copy and take it to their physician.
Physician:

If you think you may have ME/CFS, you should find a physician who is well-known for treating the illness. There are not many, so you may have to travel out of your state to see one of them. You may also try seeing a physician who has known you over a long period of time.

Because this illness is a multi-
system disease, patients may find a knowledgeable or understanding physician among possibly many different specialties, such as an immunologist, infectious disease physician, rheumatologist or neurologist. Also, some patients may benefit from a team of specialists. Some patients find their internist or primary care doctor is the best one to oversee their treatment. There is no one specialty for ME/CFS.


Surgery instructions:

Due to the biological abnormalities, surgeons and anesthesiologists may need to alter their standard of care for ME/CFS patients. See this advice from an expert and this card you should always carry.


ME/CFS Treatment Options
Support from others:
As with any chronic disabling disease, ME/CFS will have an effect on your relationships and impact your loved ones. You will need the understanding and emotional and practical support of family and friends. You could share this letter with them to help them understand. You can direct them to this website or to other national or state organizations.

Prognosis:

A large percentage of ME/CFS patients see improvement after the initial onset. These patients will experience days where they feel some better and then have "bad days." They may experience relapses that last for months or years. After many months or years, only about 5% completely recover with very few signs of the condition. Some patients do not see any improvement and are severely disabled, even bedbound, for decades.

The information contained in these topics is not intended nor implied to be a substitute for professional medical advice. It is provided for educational purposes only. You assume full responsibility for how you choose to use this information. Always seek the advice of your physician or other qualified healthcare provider before starting any new treatment or discontinuing an existing treatment. Talk with your healthcare provider about any questions you may have regarding a medical condition. Nothing contained in these topics is intended to be used for medical diagnosis or treatment.


Last update: may 25, 2014
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