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.

Mainstreaming ME Research: The 8th Invest in ME International ME Conference 2013 (Phoenix Rising) This is an excellent summary by Mark Berry on the 8th Invest in ME International ME Conference (IIMEC8) held May 31, 2013 in London, UK. The conference titled, "Mainstreaming ME Research: Infections, Immunity and Myalgic Encephalomyelitis," featured clinical and research updates as well as frank discussion by more than a dozen international physicians and scientists about the need for new diagnostics and biomarkers. 

Conference speakers represented Australia, Germany, Norway, the United Kingdom and four researchers from the United States: Drs. Daniel Peterson with the Simmaron Research Foundation in Incline Village, NV; Andreas Kogelnik with the Open Medicine Institute in Mountain View, CA; Mady Hornig with the Center for Infection and Immunity (CII) at the Columbia University Mailman School of Public Health, New York, NY and Rakib Rayhan with the Chronic Pain and Fatigue Research Center, Georgetown University Medical Center in Washington, D.C.

Conference Highlights (taken directly from the report) describe key messages discussed by each speaker:

  • Dr Ian Gibson announces new PhD studentship in Norwich looking at gut bacteria. "Things are beginning to pop, across the nation and across the world...There's a new spirit loose, I think, in the ME field".
  • Dr Peterson keynote: "It's time to stop querying patients and begin developing new diagnostics". We need both clear endpoints and clear populations for successful research.
  • Dr Kogelnik: Medicine is at a crossroads, and ME will be "key disease" in coming "health/disease revolution": technology enables the 'Quantified Self' and personalized medicine. Govt agencies "not the enemy", it's "their ignorance and our lack of data" —our job is to bring them the data so it can't be ignored.
  • Dr Rakib Rayhan: In Gulf War Illness, Baraniuk et al believe their brain scans after exercise challenge produced a "quite robust biomarker", and they want to extend to ME/CFS. New study out in a couple of weeks finds 2 subgroups for pain and fatigue post-exercise.
  • Professor Greg Towers puts XMRV saga to bed: valuable lessons learned mean this kind of situation should never happen again.
  • Professor Mady Hornig: Final analysis of cerebrospinal fluid now underway; possible finding of 'different patterns of cytokine associative networks' and 'potential novel candidate' in CSF still needs to be confirmed.
  • Dr Clare Gerada steps into the lions' den and "tells it straight"—attempts to "build a bridge between the largest Royal College and a very important problem"—hopes to "be better able to work with you to improve the care you receive from my profession".
  • Dr Donald Staines stands in for Professor Sonya Marshall-Gradisnik. Publications expected in next weeks and months; still finding "sustained, demonstrable, significant impairment in NK cell function", "highly confident" of up-regulation of T-reg cells; "clear derangement in the immune system...it's irrefutable", and "anyone who suggests that this might be fixed by exercise therapy should probably be de-registered I think".
  • Dr Amolak Bansal senses a "paradigm shift" towards model of subtle form of autoimmunity in ME; suspects patients' B cells are failing to mature properly and producing low avidity antibodies; lasting response to B-cell depletion therapy may require clearing the viruses responsible in addition to 'rebooting' the B cells.
  • Norwegian ME Association presents awards to Invest in ME founders Richard and Pia Simpson, and to Professor Malcolm Hooper for "untiring and exceptional contribution to the ME cause". Hooper accepts with his shortest ever speech.
  • Carmen Scheibenbogen and her team at Charite are finding similar immune dysfunction and share many of the same theories as Bansal, Fluge and Mella. They're trying to develop a diagnostic test, investigating EBV infections in depth, and seeing 3 immune subtypes of CFS. Hoping for solid data in about 6 months.
  • Professor Mella and Dr Fluge are closing in on publication of their follow-up study on Rituximab therapy.

The above excerpt is posted with permission from Mark Berry, Board Member and writer for Phoenix Rising.

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.