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.
The IOM report is this month’s Big News, and it has generated quite a bit of response from the patient community, much of which is focusing on the name issue. However the proposed new name is only one part of the report’s content and recommendations, and the rest of the report is equally important, even more so to the medical/research community. We need to make sure that the name controversy does not overshadow the rest of what is so important in the report. The full report, in addition to a Report Brief and Key Facts sheets, can be found here: http://www.iom.edu/Reports/2015/ME-CFS.aspx.
It is key to make sure the patient community has a voice in what happens next. The recommendations (perhaps tweaked as a result of the evaluation of the report) will go nowhere if patients don’t support them, and we will have missed an important opportunity to gain credibility for this illness within the broad medical community. So we need to gather information from the patient community that can be used to make our next steps as constructive as possible.
As one way to do this, our Association is using an information-gathering survey to reach out to our members and friends through our website, newsletter and Facebook page. This survey is intended to put a focus on the entire report, not only the name. The goal is to identify the major issues and concerns of patients and advocates, as well as the positive aspects of the report that we can build on. The summarized results of the survey will be provided to the Chronic Fatigue Syndrome Advisory Committee (CFSAC) as valuable stakeholder input.
The link to the survey is https://www.surveymonkey.com/r/G2LC3MH. Please note that this is not a multiple-choice survey. There are four open-ended "content" questions plus a general comment field. If you have read and thought about the report we would love to hear from you. Responses from people outside the U.S. are also welcome. Please respond by March 20, 2015.
1) What are the positive things in the Report that we can use to move forward?
2) What questions do you have?
3) What goals would you like to see accomplished with regard to this illness in the next 3 - 5 years? Are these goals supported by the Report?
4) What parts of the Report are problematic for you?
5) Do you have other comments you would like to share?
Charmian Proskauer, President
Massachusetts CFIDS/ME & FM Association
Working to improve the lives of all people affected by ME/CFS/FM, advancing awareness, care, treatment and research
The Massachusetts CFIDS/ME & FM Association Disability Committee recently met with Mala Rafik and Kate Sullivan, two very knowledgeable disability attorneys at the firm of Rosenfeld, Rafik, and Sullivan in Boston. Both attorneys are familiar with the current issues and problems patients encounter as they go through the disability claims processes.
This report outlines some of these problems – as well as how patients, their doctors, and their attorneys can properly respond to them.
With the present implementation of the federal Affordable Care Act (the new federal health care law), it is useful to review and update some of the eligibility requirements for medical benefits under Medicare and, in Massachusetts, for Medicaid and the Health Care Safety Net. Several of the eligibility cut-offs have been raised, so disabled patients may be newly eligible for health insurance benefits. Learn more.
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.
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 2013 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 2010 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.