Rainbow at shoreline

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) or 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 severely-disabling physical illnesses. We also support patients and their families and advocate for more effective treatment and research.

A press release was issued on July 1, 2011 by Massachusetts State Senator Dan Wolf (D- Harwich), representing Cape Cod and the Islands District, regarding legislation he had co-sponsored for creation of a state commission on Lyme Disease (LD). It is important to note that State Representative David P. Linsky (D-Natick) was also highly instrumental in moving this legislation through, along with other supportive colleagues. This item was included with budget amendments proposed for 2012 and was approved under Public Health issues, as follows: "a special commission, hereafter referred to as the commission, is hereby established for the purpose of investigating and studying the incidence and impacts in the Commonwealth of Lyme disease and other tick-borne diseases, including but not limited to anaplasmosis, babesiosis, bartonellosis, and ehrlichiosis."

Senator Wolf realizes that LD is frequently misunderstood and misdiagnosed and wants to improve education as well as medical and insurance issues surrounding this illness. Representative Linsky has been outspoken about inadequate response by the state to LD. These amendments were approved by the House and Senate and sent to Governor Patrick's office for final decision.

On July 12, 2011, Jay Coburn, the Director of Community Relations and Legislative Aide for Senator Wolf, confirmed that establishment of the Commission for LD had been signed into law by Governor Patrick when he signed the Fiscal Year 2012 State Budget. As encouraging as this development is for the Commonwealth, Mr. Coburn cautiously pointed out that it will take some time for the Commission to be appointed (i.e., it will be comprised of seventeen members from a wide representation of disciplines) and to be organized with existing resources. More information will be posted about the LD Commission as it becomes available.

Given the news about an exceptionally active season for LD, but also hearing reports about a rise in two other tick-borne diseases, babesiosis and anaplasmosis, people with ME/CFS and FM are strongly urged not to ignore sudden worsening of symptoms and/or any new or persistent symptom.

The primary symptoms of the latter two infections are reported to be flu-like: fever, fatigue and achiness, but no rash (which does not always present with LD).

An infection with anaplasmosis tends to come on suddenly, within one week or so, and it can be life-threatening without immediate care and treatment, according to recent TheBostonChannel.com (WCVB-5) health reports. They also remind pet owners to check their dogs for ticks anytime they've spent time outside.

The Massachusetts CFIDS/ME & FM Association has paid close attention to problems that ME/CFS and FM patients have encountered, even before this surge of tick-borne illnesses, particularly in trying to differentiate symptoms of the various diseases and getting properly diagnosed. It is important to realize that LD and/or other tick-borne illnesses are not limited to the Cape; these pose a statewide health risk. We have five informative articles, at our website, readily available for your information.

Differential Diagnosis of ME/CFS and Chronic Lyme Disease

Symptoms Common to Lyme Disease and ME/CFS

• A patient shares her journey from a diagnosis of Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) to a diagnosis of Lyme disease. An interview with her Lyme disease specialist follows. Read her inspiring story, A Personal Journey into Lyme Disease.

• A lecture featuring prominent New England Lyme Disease specialist, Dr. Sam Donta: The Interface of Chronic Lyme Disease, CFS and FM.

• An excellent review of Pamela Weintraub's book discussing the Lyme Disease Epidemic, is available in this article, Diagnosis, Treatment and Cure Unknown.


Since the July 2011 developments concerning Lyme Disease, the following stories aired on Boston local news:

New legislation creating a Commission on Lyme Disease was signed into law by Governor Patrick when he approved the state’s budget for Fiscal Year 2012. The new Commission on Lyme Disease will not only  investigate and study the incidence and impact  of Lyme Disease in the Commonwealth, but will also do so for other tick-borne illness including but not limited to anaplasmosis, babesiosis, bartonellosis, and ehrlichiosus.

  • Chronic Lyme disease diagnosis stirs controversy, concern (WCVB - Ch. 5, aired on Aug. 9, 2012) Lyme Disease (LD) is quite prevalent in New England and it has gain recognition as a serious and stubborn infection requiring treatment with antibiotics. However, differences of opinion continue among doctors regarding the length of time to keep a patient on antibiotics and whether residual illness will go away by itself or if it persists as chronic LD. This report features local LD specialist, Dr. Sam Donta from Falmouth, MA.

  • TOUCHED BY LYME: Massachusetts activist slams back at Lyme disease Lyme Disease (LD) activist Trish McCleary describes what led her to establish a support group for this illness called, "S-L-A-M", the Sturbridge Lyme Awareness of Massachusetts. For more information about this group, meetings (which are shown under Calendar) and review of LD symptoms, go to the S-L-A-M site .

 

 

Notice about names

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 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) 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.