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One of the most frequently asked questions by people who have, or think they might have, the Chronic Fatigue Syndrome/Chronic Fatigue and Immune Dysfunction Syndrome/Myalgic Encephalopathy (CFS/CFIDS/ME) or Fibromyalgia (FM) is who are the "experts" working with these illnesses in their area. The answer is these are "few and far between" and scattered around the country. There are doctors who are very knowledgeable and see patients in all-inclusive centers dedicated to these particular illnesses. However, using these may require considerable travel, and good insurance coverage, as well as sufficient financial means by which to absorb the cost of travel and patient balances on services and treatments.

There are centers in many states that have combined a variety of practitioners and offer a range of healthcare services, usually a blend of traditional and alternative medicine. These type of centers work with many chronic conditions and might be good options for a number of patients. However, these centers tend to accept few insurance plans.

The best suggestion for patients is not to lose hope, but learn how to take advantage of the health care that is available to them—according to their insurance and within their financial means. It is still possible to relieve symptoms, reduce exacerbations and improve overall function without going to the "experts".

Finding a Health Care Provider

Most of us with CFS/CFIDS/ME or FM can appreciate that finding a caring and capable doctor can be half the battle. This can be quite a frustrating and disappointing process. Patients will gain more (more help, less frustration) if they set realistic expectations and employ certain strategies to make the most of what is available to them. It is also important for patients to become aware about some of the factors driving the current problems in healthcare.

Many states (Massachusetts, in particular) are suffering a significant shortage of primary care physicians mainly due to fewer medical students going into primary care, being paid a much lower income in this field and many doctors becoming overwhelmed by tighter schedules and higher patient quotas imposed on them. As a result, many established doctors are leaving this field and some have set up private practices which operate on annual cash retainers (i.e. "boutique" or "concierge" medicine).

Many chronically ill people are often covered under Medicare provisions and/or Medicaid (a medical benefits program administered by states and subsidized by the federal government). Be aware that Medicaid is not accepted by all doctors due to very low reimbursement rates being reported. So, what we all are left with is a healthcare system which is certainly not fair nor easy. Thus it becomes all the more important for patients to learn how to make the most of what is available to them.

Primary care physicians (PCPs), most often internists, but who can also be general or family practitioners or doctors who specialize in geriatric or pediatric care, are usually the first point of consultation. Patients, especially those who have developed chronic and multiple health problems, really need someone to help oversee things and guide them along, especially when they are too sick to do so on their own. A capable, open-minded PCP can be quite instrumental in helping patients connect with other doctors (even if they themselves are not highly knowledgeable about CFS/CFIDS/ME and FM) who can evaluate, order appropriate tests, and recommend treatments to minimize symptoms, reduce exacerbations and improve daily function.

It is highly unlikely that any single healthcare provider is able to adequately address all of medical issues found in CFS/CFIDS/ME or FM. These illnesses are complicated, affect many body systems, and respond best to a multi-pronged treatment approach. Specialists can get the ball rolling but, by and large, they do not get involved with ongoing care. Therefore, this  highlights the need and benefit of finding a  good PCP and learning how to work with him or her. There are things patients should look for in primary care physicians and some things which are reasonable to expect from them as well as ways for patients to make the best use of time spent with their doctor.