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.
To obtain services, please fill out the Contact Us form or call our Information Line (617) 471-5559.
- 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.
Information Line and Email
The Information Line 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 at (617) 471-5559 you will hear a message giving you the name and phone number of the volunteer of the day, as well as the hours the volunteer is available to take calls that day. Then call the volunteer directly during the hours given. We ask you to please respect the hours the volunteer is available—the volunteer is a patient just like yourself, with limited time and energy.
We ask that you wait, if necessary, and call the volunteer directly, at the time given and not just leave a message on our answering machine. We do not have an office staff. The more messages left on the tape, the more work for our volunteers. Please, only leave a message if you have some specialized concern or business with the Association and wish to have the Info Line coordinator call you back.
You are also welcome to submit your questions and contact us online 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 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 CFIDS/ME 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".
Sign up for our e-newsletter.
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.