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.
Is XMRV for real?
In my last letter and on this website we have been following the blockbuster announcement in August 2009 by the Whittemore-Peterson Institute (and the Cleveland Clinic and the National Cancer Institute) about their discovery of a little known retrovirus, dubbed XMRV, in a diverse group of CFS patients. Whether or not this retrovirus is a cause of CFS has not yet been proven. There has been much controversy as the CFS/ME world community waits for studies that will confirm or refute that hypothesis. A recent British study did not find XMRV in a group of "CFS" patients but it is said that the criteria used to define CFS patients were not the same as those used by the Whittemore-Peterson group and the laboratory procedures did not duplicate those used by the WPI and their colleagues. A second British study also came up (announced February 17, 2010) with negative results but commentators urge readers not to come to any conclusions yet. So we all are in a waiting mode for other studies to be completed. Whether or not there is confirmation at least there has been a lot more interest in CFS generated and new researchers involved. We will keep you posted.
Our ongoing membership drive, next phase
We have launched our new membership drive announced on this website and via our email list. Our Membership Committee is about to initiate the next phase, contacting people on our "snail mail list." The committee has created a fine new brochure that not only will be included in the letters that will go out but also will be available for general distribution as well as doctor's offices. Please let us know if you would be able to help us distribute the brochure. We will have extra copies available at the lecture on April 24.
Physicians, physicians: Wherefore art thou?
A major problem faced by CFS/ME and FM patients in this and other nearby states (with one exception—see below) is to find physicians and other health professionals knowledgeable about these two often overlapping illnesses. We maintain a list of physicians throughout the state, carefully and confidentially managed by two of our Board members. Indeed, physician referral is one our most requested services but the reality is that the list of physicians is shrinking! We are setting up a new Health Professionals Advisory Committee to help us with recruitment, among other tasks, but our most important source of new names is YOU—that is, recommendations coming from patients throughout the state. We and others would very much appreciate your letting us know the names of any health professionals you have found to be helpful. Tell us a bit about them: their area of interest, location and how they were helpful. You can submit this information via the Contact Us page on our website. If you have had a particularly bad experience with someone please consider letting us know. Your information will be completely confidential. We will be careful in our judgments.
The state that is the exception
The one state nearby that is an exception to the rule is New Jersey. They do not have the shortage of knowledgeable physicians for a number of reasons. Their leaders have been able to get to know prominent people in their state including many physicians in key positions. They have undertaken a number of educational efforts. Perhaps particularly effective has been the work of one retired physician who follows up on recommendations coming from their membership. This physician personally calls each doctor recommended, confirms their licensure, area of medical interest and willingness to see CFS and/or FM patients. We will be considering their methods as we renew our efforts to add to our list. Your recommendations will be vital to that effort.
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.