by Rita Sanderson

Learn All You Can About the Illness

Read at least one good, thorough book about your illness, look for medical articles published by physicians who have specialized in the treatment of the Chronic Fatigue Syndrome/Chronic Fatigue and Immune Dysfunction Syndrome/Myalgic Encephalopathy (CFS/CFIDS/ME) and/or Fibromyalgia (FM), do Internet searches (a place to start is to thoroughly use this website), subscribe to newsletters published by major CFS/CFIDS/ME and/or FM organizations, and try going to a couple of support group meetings. Education is one of the most important components in the treatment of CFS/CFIDS/ME and FM and knowledge will empower you.

Interview a Physician as if You Were Hiring a Consultant (for Your Healthcare)

When you first visit a physician, determine if the physician listened, was interested, and demonstrated enough knowledge about the illness. Trust your instincts. The initial visit is a data-gathering session and future appointments are to discuss issues in greater detail. Obtain and take medical records with you on new visits.

Clear and Concise Presentation of Medical History and Symptoms

The goal is to make the most of your doctors' visits—by having questions written down, not leaving things to memory and trying to schedule an appointment when you will be able to function at your best. As unfair as it may sound, patients are judged on their ability to communicate and on their behavior and appearance, especially during consultations with specialists. Always question new symptoms and don't attribute everything to CFS/CFIDS/ME or FM. It is possible to have several other co-existing conditions, and tests may need to be periodically ordered to rule out other problems. In order to maintain a good medical history, consider using a journal, notebook or a large calendar to record the status and changes of symptoms; what medications have been prescribed; dosages and if /when dosages were changed; effects of these medications; and record anything else that may have had an effect on your health-supplements, foods, exposures, and/or activities.  Also, remember to explain your inability to, or difficulty in performing certain activities and functions so that these are documented in your medical records.

Patient Rights

As a patient, you have a right to be respected, trusted, and be taken seriously by a physician. You have a right to timely feedback on tests results and clear explanations (in terms you can understand) of the diagnosis, treatment and prognosis. You also have a right to an exact copy of your medical records. (Guidelines for securing your records vary from state to state.) A patient should not be made to feel somehow guilty or responsible for having a complicated, recurring illness that his/her doctor doesn't know how to treat and manage. A patient needs to speak up when appropriate and if you have a difficult situation to discuss or resolve, consider bringing someone with you. There may be times you may have to go outside your HMO to get what you need.

Doctor Patient Relationships

On the other hand, patients must be reasonable in their expectations and take responsibility for their care. If you have a doctor who is willing to work with you through the (sometimes lengthy) process of finding out which medications and therapies work best for you, then this could be considered a feasible arrangement. The goal is to develop a rapport with the doctor so that you can comfortably provide feedback about problems/treatments and have him/her respond in a respectful manner. Sometimes patients may not give a certain treatment enough time to work or to have it be adjusted to the right dosage, decide to make changes in the treatment on their own, and may not even report the results to the doctor. As you continue to see a particular doctor, you are creating your medical history and if you depart from that individual, you can lose a lot of what has been shared or discovered and end up starting all over again. Of course, there are times when change is absolutely necessary.

Listen to Your Body and Become Attuned to Its Signals

No doctor will ever know your body as well as you. Recognize there will be new boundaries that you cannot push through. Discuss and analyze what aspects of your lifestyle may be aggravating your condition and plan changes accordingly. Be extra careful on those days that you are feeling exceptionally bad—reconsider if you should go out (especially getting behind the wheel) to take care of a particular errand or visit on a really bad day. There are times that it may be better to postpone it, or call to see if someone else can take you.