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.

Dr. Lipkin's ME/CFS research project pending publication

Soon to be published ME/CFS research project expected to provide valuable data

The Centers for Disease Control and Prevention (CDC) Chronic Fatigue Syndrome (CFS) Patient-Centered Outreach and Communication Activity (PCOCA) held its second conference call for this year, on September 10, 2013. Elizabeth Unger, PhD, MD, Branch Chief, Chronic Viral Diseases Branch at the CDC served as host for this call that featured the world-renowned scientist, Dr. W. Ian Lipkin, who spoke about "Infection and Immunity in CFS." Dr. Lipkin is the John Snow Professor of Epidemiology Professor of Neurology and Pathology Director, Center for Infection and Immunity at Columbia University Medical Center, New York, NY. He has spent the past 30 years doing high-caliber research of many infectious agents, outbreaks, and emerging infectious diseases.

Dr. Lipkin has also worked on Chronic Fatigue Syndrome (CFS) research on several occasions. Several years ago, he was asked to lead the research project that re-examined XMRV/PMV in CFS (no infections were found in CFS); however, that study revealed many of the CFS patients had evidence of immune activation which captured Dr. Lipkin's interest. In this telephone broadcast, Dr. Lipkin provided a preview of some of the findings to come from a large research ME/CFS project, prior to its publication. This project was supported by the Chronic Fatigue Initiative (funded by the Hutchins Family Foundation). Although Dr. Lipkin prefaced his report with remarks that no single agent or cause was identified for CFS, he spoke about what he considers to be valuable data and where the focus of future research should go.

Phoenix Rising provides an excellent summary of the material presented by Dr. Lipkin in the following article, Lipkin finds biomarkers not bugs. Their article incorporates the transcript from this telephone broadcast; the link appears at the top of the article (i.e, this is highly recommended reading).

Research from Invest in ME (IiME)

Invest in ME (IiME) is an independent UK charity campaigning for bio-medical research into Myalgic Encephalomyelitis (M.E.), as defined by WHO-ICD-10-G93.3. Invest in ME are one of the founding members of The European ME Alliance (http://www.euro-me.org).

This organization provides links nationwide (for the UK) as well as internationally, including The Journal of IiME (current and prior issues). 

In 2012, they released this comprehensive 108 page article titled, THE IMMUNOLOGICAL BASIS OF ME/CFS: what is already known?,  (original source: CO-CURE). A compilation of documented immune system abnormalities in ME/CFS from 1983-2011 by Margaret Williams, published in the Journal of Invest in ME, Vol 6 Issue 1, 29-98 (June 2012). This article serves as an important resource for researchers, clinicians and patients.

To view and download previous journals, click on The Journal of IiME. To learn more about this organization and current events, go to Invest in ME (IiME) home page.

Summary of the 7th Invest in ME International ME/CFS Conference 2012 report (IIMEC7 - June 1, 2012 London, UK) by Rosamund Vallings, MNZM, MBBS, of the Associated New Zealand ME Society.


XMRV/HGRV status December 2011

A series of articles updating the status of XMRV, MLV and HGRV research at Y/E 2011, as follows:

“A Message from CII Director W. Ian Lipkin Regarding the XMRV/MLV CFS/ME Study”
(The Center for Infection and Immunity, Columbia University, December 28, 2011)

“Authors retract paper on detection of murine leukemia virus-releated sequences in CFS patients” (Virology Blog, December 26, 2011)

”Changing status of XMRV / HGRV research” (The Cheney Clinic, December 5, 2011)

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.