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.
- Last Updated: 23 January 2016 23 January 2016
Benjamin Natelson, "Brain dysfunction as one cause of CFS symptoms including difficulty with attention and concentration," Frontiers in Physiology 4 (2013): 1-5, accessed June 20, 2013, doi: 10.3389/fphys.2013.00109. This article reviews major strategies used to stratify patients with Chronic Fatigue Syndrome (CFS ) into subgroups and how subgroups suggest there are different underlying pathophysiological processes responsible for symptoms in CFS.
A news alert, New Findings Suggest Fibromyalgia Is Neuropathic, Not Depression Variant, released on June 19, 2013 (Psychiatric News Alert) by the Voice of the American Psychiatric Association and the Psychiatric Community recognizes research findings by a German team headed by Nurcan Uceyler, M.D., at the University of Wurzburg, that small nerve fibers in subjects with Fibromyalgia (FM) are impaired. Their study suggests that pain in FM might be neuropathic in nature. The study cited in the Psychiatric News Alert: Uceyler N. et al, "Small fibre pathology in patients with fibromyalgia syndrome," Brain (2013) 136 (6): 1857-1867. doi: 10.1093/brain/awt053.
Mainstreaming ME Research: The 8th Invest in ME International ME Conference 2013 — This is an excellent summary by Mark Berry, Board Member and writer for Phoenix Rising, 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 about the need for new diagnostics and biomarkers by more than a dozen international physicians and scientists. Read more at Summary of 8th Invest in ME International ME Conference 2013.
IiMEC8 – Infection, Immunity and ME – Mainstreaming ME Research, held on May 31, 2013 in London, UK. Dr. Rosamund Vallings from Auckland, New Zealand attended this conference, as she does with most major international symposiums, and felt this was an event where "...presentations, brainstorming and discussion will, I am sure, lead to much collaborative research, sharing of ideas and furtherance of understanding of this complex and very serious illness." Be sure to read Dr. Vallings' interesting and informative report (posted in its entirety, with permission).
News about significant changes planned for the diagnosis of mental disorders comes directly from the National Institutes of Mental Health (NIMH) in an article, Transforming Diagnosis (Director's Blog) by Thomas R. Insel, M.D., the Director of the NIMH. Dr. Insel clearly voices his disapproval of the DSM-5—a manual once regarded for its reliability in the definition and classification of mental disorders, because the newest edition lacks validity. Dr. Insel reviews the deficiencies in the current methods and feels that, "Patients with mental disorders deserve better." The article discusses a project, launched by the NIMH, Research Domain Criteria (RDoC), which will change direction of its research away from DSM categories; will work to create a new nosology for mental disorders; and will serve as the catalyst for this transformation.
Web Seminars featuring Dr. Kenny De Meirleir on ME/CFS: Videos 1-9. (Phoenix Rising) Dr. De Meirleir, an internationally renowned researcher and Professor of Physiology, Pathophysiology and Medicine at Vrije Universiteit of Brussels, Belgium (VUB), speaks about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in a series of interviews with ME/CFS researchers and doctors. These are produced by the ME/CVS Vereniging (a patient organization in the Netherlands) and are available as short, but very informative videos on YouTube with English subtitles.
Nine videos have been posted so far (Feb. 21 to May 6, 2013): Is ME and/or CFS a disease?, Is it possible to diagnose ME/CFS?, Is ME a hereditary condition? ME and sleep disorders, ME and pain, ME and hormones, ME, the immune-system and several viruses, ME and Blood circulation, and ME and gastrointestinal problems.
Restless Legs Syndrome, Insomnia And Brain Chemistry: A Tangled Mystery Solved? (Source: John Hopkins Medicine, Media News Release dated 05/07/2013) This article looks at results from a small study headed by Richard P. Allen, Ph.D., Associate Professor of Neurology at John Hopkins University School of Medicine that discovered glutamate was abnormally high in patients with Restless Legs Syndrome (RLS) and increased levels of glutamate correlated decreased sleep. Up until now, dopamine was considered the prime suspect in RLS and treatment usually targeted dopamine adjustment. This research may help to improve treatment of RLS and other forms of insomnia.
Anne Louise Oaklander and Max M. Klein, "Evidence of Small-Fiber Polyneuropathy in Unexplained, Juvenile-Onset, Widespread Pain Syndromes," Pediatrics 131, no. 4, (2013), accessed May 15, 2013, doi: 10.1542/peds.2012-2597. Two researchers, Drs. Anne Louise Oaklander and Max M. Klein, affiliated with the Department of Neurology and Department of Pathology (Neuropathology), Massachusetts General Hospital, Boston, MA published an important paper on Small-Fiber Polyneuropathy (SFPN) to facilitate recognition of juvenile-onset of SFPN in patients.
SFPN is a neurological disorder affecting many nerves throughout the body and causing severe, widespread pain (i.e., pain often begins or affects the legs, present as chronic disabling headaches, and/or involve the autonomic system) and associated with certain neurologic and sensory abnormalities. This study looked at and identified SFPN in significant percentage of young patients with a history of widespread pain during childhood. There are specific tests and diagnostic criteria for SFPN as well as known treatments. Proper diagnosis may spare young patients from ineffective, expensive and potentially harmful tests and treatments. In older adults, SFPN will present as multi-system complaints. The authors point out that, "Several new preliminary reports provide objective evidence that SFPN is prevalent in adult fibromyalgia"; moreover, they report some patients with fibromyalgia had subsequently received research diagnoses of SFPN from their laboratory. Dr. Oaklander conducted a study of SFPN in fibromyalgia patients—this research is currently under review, but it was presented at the 2012 American Neurological Association annual meeting.
Many Fibromyalgia Patients Have Small-Fiber Polyneuropathy by Daniel M. Keller, PhD, Oct. 18, 2012 (Medscape: Medscape Medical News from the: American Neurological Association (ANA) 137th Annual Meeting) Dr. Keller reported on a small study conducted at the Massachusetts General Hospital of patients with a Fibromyalgia diagnosis. Almost half of these patients were found to have small fiber polyneuropathy (SFPN) — a condition for which there are diagnostic tests and treatments. Dr. Anne Louise Oaklander, one of the authors of this study, noted that, "Despite an emphasis on central mechanisms as the cause of fibromyalgia, these findings suggest that a specific—and sometimes treatable—type of peripheral neuropathy is a common cause of the condition." The study is currently under review and not yet published. To access this article at Medscape, you will need to sign up for a free account: http://www.medscape.com.
In another article disputing controversial changes included in the pending DSM-5, "Has the manual gone mental?" (Current Biology) Michael Gross, Ph.D., a science writer in the UK, challenges how the impact of symptoms on someone's thoughts and behaviors can now fulfill a psychiatric diagnosis. He also questions the rising trend which restricts or deems as abnormal what may very well be natural and reasonable reactions or behaviors under many circumstances. Michael Gross, "Has the manual gone mental?", Current Biology 23:8 (2013):295, DOI: 10.1016/j.cub.2013.04.009.
An exploratory study, Results of switching to milnacipran in fibromyalgia patients with an inadequate response to duloxetine: a phase IV pilot study, was conducted by Dr. Lucinda Bateman, with the Fatigue Consultation Clinic, Salt Lake City, UT, to evaluate the safety, tolerability and effectiveness in treatment when switching medications from the same class of drugs (i.e., milnacipran and duloxetine are both serotonin-norepinephrine reuptake inhibitors (SNRI)). Bateman L et al, "Results of switching to milnacipran in fibromyalgia patients with an inadequate response to duloxetine: a phase IV pilot study," Journal of Pain Research 2013:6 (2013): 311, DOI: http://dx.doi.org/10.2147/JPR.S43395. Select the download button below the journal abstract, to retrieve the full-text article for free—Dovepress provides open access to peer-reviewed medical and scientific journals.
Opinion: New Diagnosis Risks 'It's All In Your Head' Response To Illness (CommonHealth – WBUR) Laurie Edwards, an author and someone with a rare genetic lung disease, explains why the new psychiatric category, Somatic Symptom Disorder, may be more detrimental to women simply because certain conditions affect them at a disproportionately higher rate than men
On April 11, 2013, the Department of Health and Human Services, Food and Drug Administration (FDA) released an announcement regarding the 20 disease areas that were selected to be addressed during the first 3 years of the Patient-Focused Drug Development in the Federal Register /Vol. 78, No. 70 /Thursday, April 11, 2013 /Notices. Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia are two of the top 20 diseases selected, greatly due to patient advocacy initiatives.
Advocacy Updates on CFSAC Recommendations (Occupy CFS) Since last month, Jennie Spotila has closely followed and added a series of important updates concerning the FDA's Drug Development Workshop for CFS and ME on her Advocacy Page. Be sure to read all of them.
• Learning about FDA (April 13th)
• Down to the Wire (April 7th)
• FDA Deadlines (April 3rd)–includes important deadlines
• What the FDA Wants (April 2nd)
• Clarity on Comment (March 28th)
• Index of FDA Meeting Resources (March 25th)
• Two Surveys, Two Opportunities (March 22nd)
• Evidence Based at NIH (March 21st)
• Showcase (March 19th)
• Quick Announcement (March 18th)
• Tell It to the FDA (March 15th)
Permission was granted by J. Spotila, creator and moderator of Occupy CFS, to link to articles/posts at her website.
Report From Paris: Peterson Reports Antiviral (Vistide) Effective in Treating Herpesvirus Infected Chronic Fatigue Syndrome (ME/CFS) Patients (Simmaron Neuroimmune Research Foundation) Dr. Daniel Peterson, one of the physicians who uncovered the Incline Village CFS outbreak during the mid 1980′s and has continued to diligently work on CFS for more than 25 years, presented at this year's HHV6 Conference in Paris. Dr. Peterson discussed the results from a retrospective study of CFS patients who had been treated with Vistide (administered as an IV) from 2005-2012.
TV & Screenwriter Gives a Voice to Fibromyalgia Patient in New Book (BWWBooksWorld) An article featuring a well-known television producer and screenwriter, Suzanne Fitzpatrick, who has written a book (true story) about a patient's journey with Fibromyalgia. The book is titled, If She Only Knew . . .: Patricia Jacobson's Story of Fibromyalgia, and was published on February 7, 2013 by Xlibris.
Potential of transcranial direct current stimulation shown in fibromyalgia (Internal Medicine News Digital Network) Although this is a news source for physicians, this article discusses results of transcranial direct current stimulation, as a technique for pain reduction, in a group of Fibromyalgia patients. Four of the co-authors of this pilot trial, Villamar MF et al, are affiliated with the Laboratory of Neuromodulation, Department of Physical Medicine & Rehabilitation, Spaulding Rehabilitation Hospital and Massachusetts General Hospital, Harvard Medical School, Boston, MA.
Behm et al. published a study, Unique immunologic patterns in fibromyalgia, in BMC Clinical Pathology 2012, 12:25, the results of which revealed that cell-mediated immunity was impaired in FM patients, in comparison to healthy controls. This research identified “unique and valuable immunologic traits, which, when combined with clinical patterns, can offer a diagnostic methodology in FM.” This is an open access, research article (full-text PDF) provided by BioMed Central.
Alonso-Blanco et al., represents a research group from Spain and Denmark, that conducted a study comparing referred pain patterns in myofascial TMD and FM, Characteristics of referred muscle pain to the head from active trigger points in women with myofascial temporomandibular pain and fibromyalgia syndrome published in the Journal of Headache and Pain 2012 Nov;13(8):625-37. This article includes several helpful diagrams showing neck-face pain patterns associated with FM. This is a peer-reviewed, open access journal (full-text PDF) provided by SpringerOpen.
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.