Rainbow at shoreline

The Massachusetts ME/CFS & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with ME (Myalgic Encephalomyelitis), CFS (Chronic Fatigue Syndrome) or FM (Fibromyalgia), their families and loved ones. The Massachusetts ME/CFS & FM Association works to educate health-care providers and the general public regarding these severely-disabling physical illnesses. We also support patients and their families and advocate for more effective treatment and research.

A Message from our President

MassCFIDS' president, Dr. Alan Gurwitt, discusses 4 topics in his Spring/Summer letter: the lecture by Dr. Bell, Dr. Kenneth Friedman’s personal statement at the NIH State of Knowledge Conference in April, some thoughts about the Association, and the upcoming fall event.

DSM-V concerns

National advocacy effort states concerns about upcoming revisions to DSM-V and potential risks to CFIDS/ME and fibromyalgia patients.
Learn more...

Treatment Centers for CFIDS/ME and/or FM

Treatment Centers for CFIDS/ME and/or FM

This list provides general information about some of the leading nationally recognized treatment centers for CFIDS/ME and/or FM. Aside from the obvious (the financial investment), the choice will ultimately be yours based on what you think will meet your own needs and what you feel you can commit to after the initial visit.

What many of these centers have in common is that most of the clinicians who direct them (many of whom have also created these centers) have about twenty years of experience with these illnesses. Many of these physicians are also actively involved in research, participate in educational conferences, and/or have published research or educational medical journal articles. Therefore, this information was usually not included in the summary provided for each center.

What may vary between centers are the philosophies and research that direct treatment protocols, the types of diagnostic tests used, other programs or services offered, the amount of time to secure an appointment, the amount of time spent during consultations, how follow-up visits are handled, and fees for services. Additional details regarding these aspects and new-patient forms can be reviewed at each website.

Cost may or may not be the deciding factor. Be aware that a few centers accept certain insurance plans (including Medicare), but for the most part, patients are expected to pay for services when rendered and/or they may be required to send in a deposit or even payment in full with their registration forms. It is crucial to become fully informed about the payment and cancellation policies for any given center because some will not refund the fee. It may be possible to receive partial reimbursement from one's own insurance carrier for some of the services or tests. This will need to be pursued by the patient and here too, it is important to find out ahead of time what the coverage will be for "out-of-network" medical care. Last, but not least, the cost of travel and lodging needs to be factored in as well as follow-up care, since some centers will do this by telephone while others require that patients return to the facility. It may turn out that the difference in the total cost of going to one center versus another may not be that substantial.

FL - Chronic Fatigue & Immune Disorders Research and Treatment Center (aka The Chronic Fatigue Center) ~ One of the newest centers to open providing care and treatment of CFIDS and related illnesses. It was the brainchild of Dr. Nancy Klimas, who serves as Chief Medical Officer of this center located in the Miami area. Patients will undergo initial assessment of about one hour by nurse practitioners personally trained by Dr. Klimas. This data, the results from blood tests and other select diagnostic tests, and a customized treatment plan will be reviewed with patients at a follow-up appointment (also lasting about an hour). Therefore, patients will need to return to the center in about one month's time. This is a private fee-for-service clinic but lab work done at the center can be billed to patient's insurance provider.

NC - Cheney Clinic ~ The Cheney Clinic was founded in 1990 by Dr. Paul Cheney in Charlotte, NC where it operated for ten years. In 2001, the center was relocated to a medical arts building specifically designed and constructed for CFIDS patients. This practice operates with strong focus on CFIDS and the illness processes (but clinic will see patients with other diagnoses) at the level of gene expression and its effects. Dr. Cheney describes it as a "low volume, high intensity practice with large clinical research aspect." The initial consultation will take two days to complete; therefore, it is suggested that patients arrive the day before and leave the following day. Prepayment is required when the registration forms are sent in. It is important to carefully review information regarding fees, cancellations/ rebooking and waitlist on the "policies and procedures" page at the clinic's website.

NC - Hunter-Hopkins Center (HCC) ~ This center was founded in 1995 by Dr. Charles Lapp. This clinic employs the Stepwise Approach - traditional medical therapy coupled with a variety of complementary therapies, including a behavioral component. This center has participated in various types of research, including FDA-approved investigational drugs which are detailed at the HCC website under "Research". New patient information (with fees and policies) can be found under HHC forms.

NY - Fatigue Center ~ A private practice which is overseen by Dr. Derek Enlander at two locations-Manhattan and Long Island, NY. Treatments focus is on improving the immune system, which may include intramuscular injections, specific supplements and/or pharmaceutical products. An overview of treatments is provided at center's website.

NY - Pain & Fatigue Study Center ~ Though Dr. Benjamin Natelson is Emeritus Professor at the New Jersey Medical School, the center that he runs for treatment of severe fatigue or widespread pain, CFIDS and/or Fibromyalgia is actually located at the Beth Israel Medical Center (BIMC) in New York, NY. Dr. Natelson is involved in clinical research supported by the National Institutes of Health and by various pharmaceutical companies. Patients can expect the initial appointment to last about 90 minutes (at BIMC) and they are asked to get lab work done ahead of time through their own physician. Patients return in about one month's time to complete treatment planning-the focus of treatment is a multidisciplinary approach. Currently, Medicare is listed as the only insurance accepted by Dr. Natelson's office. Check the "New Patients" page for most current information.

MI - Treatment Center for Chronic Fatigue Syndrome ~ Dr. A. Martin Lerner's background is in Infectious Diseases, predominantly viral diseases, including virally induced heart disease. Dr. Lerner holds five patents related to improvements made in CFIDS through the use of antiviral agents. Therefore, this practice focuses on the persistent herpes virus infections that have been found in CFIDS (i.e. Epstein-Barr Virus, Cytomegalovirus and Human Herpes Virus 6). Diagnostic work-up is reviewed on the FAQ's page at the center's website. For information about appointments and Dr. Lerner's availability, go to their "Contact Us" page. The office is located in Beverly Hills, MI.

UT - Fatigue Consultation Clinic ~ In 2000, Dr. Lucinda Bateman opened the Fatigue Consultation Clinic in Salt Lake City, Utah. The center is concerned with providing a more thoughtful evaluation process and sharing this information not only with patients, but with all involved providers. Presently, anyone interested in being seen at this clinic, is advised to call and inquire about appointment availability.

This summary is provided for your general information. Please consult with your physician or other healthcare provider in matters pertaining to your medical care. See our full Disclaimer.

 

Notice about names

The Massachusetts ME/CFS & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and  Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) and other federal agencies, including the CDC, are currently using ME/CFS. 

Massachusetts ME/CFS & FM Association changed its name in July, 2018, to reflect this consensus.