One of the most frequently asked questions by people who have, or think they might have, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) or Fibromyalgia (FM) is who are the "experts" working with these illnesses in their area? The answer is that experts 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 ME/CFS 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, since they are being paid a much lower income in this field and many doctors are 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 ME/CFS or 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 ME/CFS 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.

Tips on how to get the most out of a doctor's visit

Finding a primary care physician has become a challenge for many patients around the country and this is becoming a frequent topic reviewed in magazines. Even aside from someone seeking medical care for ME/CFS or FM, time allotted for appointments with physicians is shrinking. So patients, like it or not, must prepare for them as carefully and thoroughly as possible.

Many, but not all, of the tips and recommendations listed below are those provided by Dr. Lucinda Bateman in a workshop at the 2007 International Association of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME) Conference.

What type of doctor is best for ME/CFS or for FM?

To understand what type of doctor is best suited for ME/CFS or FM, it is helpful to consider how doctors might have learned about the diagnosis and treatment of these illnesses. Lack of time may prevent the most well-intentioned doctors from staying abreast of the most significant research information and clinical guidelines on many illnesses.

As mentioned earlier, the worldwide number of physicians (some of whom are also involved in research) who could be considered to have true expertise in the diagnosis and management of ME/CFS is very limited. Periodically, some medical journals will publish information about ME/CFS or FM, but the depth to which these articles go or the random aspects brought up about these illnesses can vary greatly.

The number of doctors who are well informed about ME/CFS remains small. Many doctors are not well informed and this could greatly influence their approach to the illnesses.

Patients have had some success in getting diagnosed with ME/CFS by infectious disease specialists or neurologists, partially due to the type of abnormalities and dysfunction they might detect in various tests. It is not yet clear how much the newest diagnostic criteria for ME/CFS put forth in the report from the Institute of Medicine will improve doctors' general understanding. 

In the last few years, more doctors (especially rheumatologists) have become familiar with FM. Individuals who have FM have been usually diagnosed by rheumatologists mainly because the first standards for the classification of FM were created in 1990 by the American College of Rheumatology. Therefore, FM tends to be somewhat better recognized by doctors in this specialty, though there can be differences in their treatment approaches and the research or theories that any given rheumatologist may follow.

Other specialties that might be working with FM (in more recent years) are physiatrists (this is a branch of medicine that focuses on the patient's musculoskeletal system and spine, and uses physical therapy and some medications as primary treatments) and sometimes, pain management specialists (some are physiatrists, but usually they are anesthesiologists) can help with persistent, chronic pain. 

The Centers for Disease Control (CDC) also has a summary on the diagnosis and treatment of FM but it is quite limited. Criteria for the classification of FM are further detailed in our Diagnosis of FM section.

Cheat Sheet for doctor's visits

More resources

ME/CFS Self-Care: The Basics

Chronic Fatigue Syndrome and Fibromyalgia Specialists—A list of ME/CFS and FM specialists on U Compare Health Care.

Consequent conditions to CFS/ME and cancer prevalence

Dr. Gudrun Lange Reviews Neuropsychological Testing for CFS and FM

How Doctors Think by Jerome Groopman, M.D.

In an effort to improve medical efficiency by Dr. Byron Hyde

Links to Lists of Health Care Providers Outside of Massachusetts

Making the Most of Your Doctor Visit This article reviews tools (like charts and pain logs) that can help patients record and monitor their pain—these are provided by the American Chronic Pain Association (ACPA). 

On the Morbid Fascination with Psychiatric Morbidity by Dr. Alan Gurwitt

Recommended for ME/CFS and FM patients Undergoing Surgery by Dr. Charles Lapp

The ME/CFS Initiation— A Primer for New Patients

The Physical Basis of CFS by Dr. Anthony Komaroff

Using an Emergency Room Properly

What questions should a doctor be asking? by Dr. Byron Hyde

Why doctors can't diagnose by Dr. Byron Hyde