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.

By Rosamond Vallings
March 19, 2014

The day opened with a very good overview of the work being undertaken at Stanford: Â Jose Montoya; The Stanford ME/CFS initiative; a brief history of collaboration, innovation and discovery in the filed of infection-associated chronic diseases.

He talked of a large team working over 4 years. He described ME/CFS as a real illness affecting many lives.

He presented a case study initially of a patient who had HHV-6 in the blood and cerebrospinal fluid, treated with valganciclovir with a good response. The MRI had shown bright lesions in the right thalamus. Antivirals were again being considered after this patient relapsed later.

He then elaborated on the fact that there are subsets of this illness, and evolution of the illness over time. Stanford got involved as they came upon many patients face-to-face.

The Stanford Initiative is looking at the immune system, genes, neuroradiology, EEGs, cardiology and infectious diseases. He mentioned how some patients are bedridden and have extreme sensitivities. It is likely that there are infections triggering the illness or perpetuating it. Valganciclovir is helpful for HHV6 and EBV. But none of this is necessarily the full answer. Trials did demonstrate the effects of antiviral therapy, which also has an immunomodulatory effect. They are now looking at the effects of methylphenindate as a treatment plus a nutrient formula.

The underlying principles: much time and questions, a multidisciplinary team, clinical and translational research and methodology (double blinded, placebo controlled trials). There needs to be a candid and rigorous approach.

Their clinic has 600 patients currently and a waiting list of 300. They have a multidisciplinary team and have weekly meetings. 3 groups of trials are currently running: drug studies, longitudinal studies and case control studies—e.g., cytokine levels associated with severity. In this one, 13 cytokines are found to have an upward trend leading to many effects, and levels correlate with severity. In addition there are associations with autoimmune disease, and this may be consistent with an auto-immune process going on in ME/CFS. 2 cytokines are particularly higher in women: leptin and resistan. The LASSO method is used. TGFbeta correlates with duration of illness, is decreased and levels correlate with severity. This opens the door for treatment with antiinflammatory agents. Rest, good sleep and meditation are all options to be considered.

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.