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.

Assistance for Physician Referral Feedback Letter

Dear Massachusetts CFIDS/ME & FM Association Member and Donor: 

We are in the process of updating our referral data base and hope that you may be able to lend some assistance.

One of our most important services to patients and their families is to provide referrals to knowledgeable and caring physicians and other health care providers. You know how important it is to find a health care provider who actually knows about and validates these illnesses. We have been providing referrals for over 25 years.

Our primary source of referrals is from fellow patients and their families.

Here's how you might help. If you have experience with a doctor/practitioner, specialist or non-specialist, and are willing to provide us with their information and your recommendation, you would really be helping other patients.

The information you provide us is kept strictly confidential and is entered into our referral data base without patients' names attached. We do not make our data base public, and we are careful not to refer too many patients to any one doctor.

You can help in one of two ways:

1. Fill-out a simple online Provider Recommendation Form. After we receive it, with your permission, we will call you to get a few more details on your recommendation.

Or

2. Fill-out our Health Care Provider Recommendation Questionnaire. This gives us the more complete information we need. If you can find the time and energy, just print-out the form, fill it out, and put it in the mail.

Either way, your effort and caring will be of real assistance. We would also like to take this opportunity to wish you a new year filled with peace, prosperity and many good things – Happy 2014!

With our appreciation,

The Massachusetts CFIDS/ME & FM Association

Volunteers needed for Website Committee

Would you like to help with the MassCFIDS website? Work from home and by conference call with a wonderful group of dedicated volunteers! You can “start small” and decide if you would like to do more as you learn more. All new volunteers may participate in our monthly website conference call.

The following positions are open:

Writer(s): Start by writing up short news items – background information/links will be provided. Progress to longer pieces and working with Editorial Committee to help with other needed work. Work closely with our Editorial Committee and participate as desired in monthly website Editorial conference calls.
Qualifications: good writing skills, background in ME/CFS/FM content (research, issues, blogs and commentary).

Book reviewer(s): Read and write reviews of books relating to CFIDS/ME/CFS or FM, and appropriate for patients and families. Books for review will be provided and will become part of our library. Reviews will be submitted to our Editorial Committee for editing/approval, are copyright MassCFIDS, and may be posted on masscfids.org. In some cases, reviewer may recommend not posting a review.
Qualifications: Good judgment and general knowledge of published books on this topic. Excellent writing skills.

Photo Editor: Suggest/select photos for possible use on the website and printed materials, subject to review by the Website and Communications committees. Photos may appear on web pages, within articles/newsletters, and on marketing materials. Start by creating “lightboxes” on stock photo sites and downloading and sizing proofs, and advising on placement. Progress to purchasing the appropriate photos, managing the photo budget, downloading and preparing photos for use. May progress to helping design and format marketing materials, such as brochures and take-ones, for commercial printing online.
Qualifications: Ability to select appropriate images, understanding their potential use on the website or in other materials. Basic knowledge of graphics editing and web/print requirements. Ability to work cooperatively in a group and to meet reasonable deadlines.

Web Analytics: Monitor our web traffic using Google Analytics. Start by looking at Google Analytics standard reports and creating summaries for the Web Committee. Set up a system we can use going forward to track site usage. Progress to helping us understand which pages and content are the most useful and where problems exist, and how to make our site more useful to our visitors. Ultimately we would like to be able to use Google Analytics code to “tag” links to PDF’s and videos.
Qualifications: Analytical bent, curiosity, willingness to ask questions, find answers and learn from documentation. Some experience with web analytics or Google analytics would be helpful. A one-year commitment is requested.

Content posting: Use our content management system to post/update content. Since this requires some training, we ask for a one-year commitment. Work on updating content on MassCFIDS.org, working with graphics, and suggesting improvements to page layouts.
Qualifications: No coding or technical knowledge is needed. Most important qualification is attention to detail. Second is good writing/editing skills (grammar and punctuation) and familiarity with word processing. Some understanding of how websites work would be helpful. Ability to learn new concepts and comfort with computers can substitute for direct experience.

Needs are on-going.

Contact us to volunteer.

New ME/CFS Primer for Clinical Practitioners

Date: 5/15/2012

Dear Members, Colleagues and All who are interested in Chronic Fatigue Syndrome,
On behalf of the board of directors of the International Association for Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (IACFS/ME), I am pleased to announce the release of the ME/CFS Primer for Clinical Practitioners. (ME/CFS and CFS/ME are equivalent terms.) The goal of the Primer is to provide the information necessary for clinicians to understand, diagnose, and manage the symptoms of ME/CFS. The text was developed over two years by the 11-member Primer Committee and externally reviewed by a number of international ME/CFS specialists and advocates.

Highlights of the Primer include:

  • A summary of the pathophysiological effects of ME/CFS to date
  • A user-friendly diagnostic worksheet utilizing the Canadian Consensus Criteria
  • Straightforward treatment suggestions covering an array of ME/CFS symptoms
  • Emphasis on post-exertional malaise and activity management
  • Sections on special populations/ problems (e.g. severely affected, pediatric ME/CFS, pregnancy)

The full Primer document is available on the IACFS/ME website (Link to Primer) in a printer-friendly format with a requested donation of $15 to help continue the work of IACFS/ME. We hope you find the Primer to be a useful adjunct to your practice and a worthy companion to your reference library.

With best regards,
Fred

Fred Friedberg, PhD
Chairperson
Primer Committee

President
IACFS/ME
www.iacfsme.org

Link to Primer

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.