The Massachusetts CFIDS/ME & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome, also known as Chronic Fatigue Syndrome), ME (Myalgic Encephalomyelitis) or FM (Fibromyalgia), their families and loved ones. The Massachusetts CFIDS/ME & 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.
- Last Updated: 07 February 2016 07 February 2016
When people find themselves with a new diagnosis and don’t know which way to turn, or perhaps do not even know where to get a diagnosis, or need answers to new issues or problems that have developed, it is very reassuring to know that credible information and guidance is only a phone call or email away.
We at the Massachusetts CFIDS/ME & FM Association understand just how difficult this situation can be. We offer several types of support services.
- Assist with patient referrals to healthcare providers
- Give guidance on disability process and issues—please see the Disability Handbook available on our website
- Provide information about active support groups or other sources of support
- Respond to general questions about these illnesses
To obtain services, please fill out the Contact Us form or call our Information Line.
Information Line and Email
The Information Line, 617-471-5559, is the gateway to access the Association’s services. The volunteer will either answer your questions or direct you to a volunteer who specializes in support groups, physician referral, or disability counseling.
When you call the Information Line, you will be asked to leave a message with your name, telephone number, best time to reach you, and what you are calling about. Please speak clearly! A volunteer will call you back, usually within a day or two. Please be patient. We do not have an office staff. All of the calls are returned by volunteers.
You are also welcome to submit your questions online using our email form, contact us, for:
- Disability guidance
- Physician referrals
- General information
Emails are answered by volunteers, so it may be a few days before you get a response.
To recommend a physician or other health care provider
One of the most requested services is Physician Referral. Depending on your needs, we can provide one or more names of physicians or other health care providers who have been recommended by other patients. We can provide more detailed information on providers in Massachusetts. If you live in another state, please see Links to lists of health care providers outside of Massachusetts.
We are always looking for health care provider information to add to our database. If you wish to recommend a physician or other health care provider who has helped you, please fill out our online Provider Recommendation Form. Alternatively, you may download and print the more detailed Health Care Provider Information Questionnaire, fill in as much information as you know, and mail it in to the address at the top of the form.
Information you provide will be used to assist other patients. This is a very important way that you can help.
Over time the number of support groups which meet in person has declined as individuals find sources of support online, such as through internet message boards or chat rooms. However, there are several active groups in the greater Boston area and scattered across the state. Please call the Info Line for locations and contact information.
As wonderful, accessible, and useful as the Internet might be, there is always a need for more support groups "in real life." So, if you feel you have enough personal or working knowledge with ME/CFS and/or Fibromyalgia, and have the desire to create a safe and encouraging environment where you and others could share experiences and information, then we can help you start a new group.
We suggest anyone seriously considering this role to please review the articles on our website which should answer many frequently asked questions. There is a short version covering the basic 5-W's (i.e., Who, What, Where, Why, When) for starting a support group and a complete guide discussing functions and other things to take into account at Resources for Support Groups.
Interested parties should then get in touch with the Association either by email using the contact us form or by calling the Info Line, leaving their name, number and a brief message. You will be contacted by someone who will discuss your interest and this process further with you as well as provide necessary guidance to help you get started. Our groups are established strictly for educational and support purposes and not with the intention of promoting one's own services or products under the guise of a "support group".
Periodically, or when there is important news to share, we will send out an e-newsletter. Your email address will be kept private and used only for this purpose.
Important Note: We do not charge for our services. But if you support our work or receive help from us, then please consider becoming a member or making a donation of whatever amount you can afford to make it possible for us to continue providing these services.
Notice about names
The Massachusetts CFIDS/ME & 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) are currently using ME/CFS. The Centers for Disease Control and Prevention (CDC) are calling the illness CFS.
Until there is consensus on a name for the illness, the Massachusetts CFIDS/ME & FM Association name will not change.