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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) and 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 often severely-disabling physical illnesses. We provide supportive services for patients and their families and advocate for more effective treatment and research.

News from around the Web

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Important Social Security Disability Alert PDF Print E-mail

The Social Security Administration, on April 3, 2014, has issued a new Ruling, Evaluating Claims Involving Chronic Fatigue Syndrome. This Ruling is now the legal basis by which Social Security evaluates CFS/CFIDS/ME disability claims and reviews for both Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). This is a very important development for disabled patients who are unable to work and need to obtain Social Security financial and medical benefits.

The new Ruling replaces the former CFS Ruling (SSR-99-2p) issued in 1999. The 2014 Ruling sets detailed standards for the medical evaluation of claims: including the documentation of specific symptoms, signs, laboratory findings and medical tests by a physician. The Ruling places importance on detailed, longitudinal medical notes in the patient's record - as well as the physician's evaluation of the severity of the illness and its limiting effects on the person's ability to work.

The new Ruling is an improvement on the 1999 Ruling and includes findings from both the 2003 Canadian Definition and the 2011 International Consensus Definition.

The Massachusetts CFIDS/ME & FM Association will shortly post a full evaluation and explanation of the new Ruling as a guide for patients.

To view the new Ruling:
http://www.ssa.gov/OP_Home/rulings/di/01/SSR2014-01-di-01.html

 
If you missed the FDA's recent meeting on Fibromyalgia... PDF Print E-mail

The Food and Drug Administration held its first meeting on Patient-Focused Drug Development for Fibromyalgia on March 26, 2014. The purpose was to collect "voice of the patient" information about what it is like to live with fibromyalgia, what are the symptoms, and what treatments help (or do not). Patient presenters included two panels of invited speakers, as well as callers who were viewing the meeting via web and comments from those in the audience.

A recording of the entire meeting has been posted on the FDA website. It is not too late to submit your comments in response to the questions the FDA is asking. Public input will be compiled by the FDA into a "Voice of the Patient" report which will be used to help inform the development of new drugs and treatments. This process is also underway for ME/CFS.  Get details here.

 
Next IOM public session May 5, 2014 PDF Print E-mail

The third meeting of the Institute of Medicine committee on Diagnostic Criteria for ME/CFS will be held May 5-6, 2014 in Washington, D.C. On the afternoon of May 5, the committee will hold an information-gathering session that will be open to the public. Interested individuals will be able to attend the open session in person at the National Academies of Science building or virtually via webcast. 

The Committee is looking for input on specific questions relating to education of health care providers and the name of the illness. For more details, and instructions on how to submit your comments before and after April 23, please read more here.

 
Site Highlights PDF Print E-mail

Chronic Fatigue Syndrome Mortality Survey Begins

If you know someone who passed away after being sick with ME or CFS, please participate in this important survey. If you can distribute this request for study participants to all whom you know in the ME and CFS communities, please do so. This research can help to make the disease(s) of ME and CFS less invisible for patients and their loved ones. Read more for complete information, disclosures, and a link to the survey.


Featured Articles

Mitochondrial Dysfunction, Post-Exertional Malaise and CFS/ME
This extensive review, written for both lay and professional readers, explains the role of mitochondria in cellular function and describes the characteristics and consequences of mitochondrial dysfunction fatigue in skeletal muscle. Illnesses with mitochondrial dysfunction are reviewed, including CFS/ME. Some treatments that are used are also described, as well as notes regarding exercise for patients with CFS/ME. There is an extensive bibliography.

Dental caries and oral problems have a strong and proven link to poor salivation and persistent dry mouth. Dry mouth and various oral and dental complications are problematic for many people with Chronic Fatigue and Immune Dysfunction Syndrome/Myalgic Encephaloyelitis (CFIDS/ME), and/or Fibromyalgia (FM). Persistent dryness could indicate an autoimmune illness like Sjögren's, linked to poorly functioning or damaged salivary glands, or be the result of side effects associated with many medications. Either way, it is a serious problem that warrants prompt medical or dental attention. Read more at Oral Complications in Sjögren's Syndrome and Chronic Dry Mouth.

Newsletters are now online!

Starting in January 2014 the monthly newsletter can be accessed online. Find links to important research, announcements of upcoming events, advocacy updates, coping tips, and more... Go to About Us - Newsletters.

New CME course: A Case-Based Approach to Chronic Fatigue Syndrome

This 30-minute online course featuring clinicians Lisa W. Corbin, MD; Anthony L. Komaroff, MD; Benjamin H. Natelson, MD; and Peter C. Rowe, MD, was published on April 19, 2013 and is available for CME/CE credit until April 19, 2014, and also available to the public. Free registration on the Medscape website is required in order to view this course.

 

View videos of recent lectures

View the video of Dr. Anthony Komaroff's lecture, "CFS Research: Recent Progress and Challenges"

View the video of Dr. Jo Solet's lecture, “The Science of Sleep.”

View the video of Dr. Byron Hyde's lecture, “Why Doctors Can’t Diagnose and What Tests Should be Considered.”

View the video of Dr. David Bell's lecture, "25 Year Follow-up in Chronic Fatigue Syndrome: Rising Incapacity."

View the video of Dr. Anthony Komaroff's lecture, "The Latest Research on CFS."

NOTICE  July 2012
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 CFS/CFIDS/ME. 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.

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