Important Announcements

Upcoming events – THIS MONTH

• Tuesday, September 9 - PCOCA call

CDC CFS PATIENT-CENTERED OUTREACH AND COMMUNICATION ACTIVITY (PCOCA) CONFERENCE CALL
Sept 9, 3 – 4 p.m. EDT; Pre-registration is not required, but call a few minutes early to get connected.

Call in number: 800 857 5128. Access code: 4459244

Featured presentation: "Can ME/CFS and FM Sleep Research Help You Sleep?"
Lucinda Bateman MD, Director, Fatigue Consultation Clinic, Salt Lake City, Utah
For more information, see http://www.cdc.gov/cfs/meetings/cfspcoca.html

• Thursday, September 18 - Webinar

Solve ME/CFS Initiative Investigator Report: Deciphering Post-Exertional Malaise
Thursday, September 18, 2014
2-3:00pm Eastern (1pm Central/Noon Mountain/11am Pacific)

Dane B. Cook, Ph.D. is assistant professor of Kinesiology at the University of Wisconsin, Madison. Cook is one of the Solve ME/CFS Initiative's 2011 funded investigators. Cook will describe the system biology approach his team is taking to provide a clear picture as to what causes post-exertional malaise. This is critically important research for ME/CFS because as Cook notes, "You can't begin to fix a problem like post-exertional malaise until you can understand its underlying cause."

For more information on the webinar series, including future sessions, see http://solvecfs.org/mecfs-resources/patient-resources/solve-mecfs-initiative-2014-webinar-series/

• Monday – Tuesday, Sepember 29 and 30 – P2P Opioids and Chronic Pain workshop

Are you being treated for chronic pain? If so, you may be interested in "The Role of Opioids in the Treatment of Chronic Pain" Workshop Sept 29-30, 2014, sponsored by the National Institutes of Health (NIH) Pathways to Prevention program. This workshop and the final report seek to identify research gaps and set future research priorities. For more information, and to register for the videocast, see https://prevention.nih.gov/programs-events/pathways-to-prevention/upcoming-workshops/opioids-chronic-pain. You can register for the videocast on this page. NOTE: this workshop is similar in format to the upcoming meeting "Advancing the Research on Myalgic Encephomyelitis/Chronic Fatigue Syndrome," scheduled for Dec. 9 and 10, 2014.

• Save the date! Saturday, November 15, 2014.

Massachusetts CFIDS/ME & FM Association general membership meeting, and special program to be announced. Morse Institute Library, Natick, MA, 1 - 3:30 p.m.

Research news

• Two studies sponsored by Solve ME/CFS Initiative (formerly CFIDS Association of America) were recently published. These brief descriptions of the work appear on the solvecfs.org page, http://solvecfs.org/research-digest-july-2014-define-diagnose/

Jordan Dimitrakoff, M.D., a former member of the CFS Advisory Committee, is the corresponding author on a paper reviewing the evidence for neurological and immunological biomarkers in ME/CFS. He teamed up with investigators at Harvard, Dartmouth, DePaul, University of Mississippi, Johns Hopkins and CDC to conduct this review. Potential neurological biomarkers included brain anatomy using neuroimaging, brain blow flow, brain function (as measured by functional neuroimaging), brain chemistry and cognition. Potential immunological biomarkers included cytokines, NK cell markers, humoral immunity and inflammation characteristics. The authors discussed the limitations of these potential biomarkers and some reasons why none have been validated. They recommended that because ME/CFS is heterogeneous that these biomarkers be used to define subtypes. This important paper is published in the June 2014 issue of Fatigue: http://www.ncbi.nlm.nih.gov/pubmed/24932428

Investigators from Stony Brook University including Jenna L. Adamowicz, Indre Caikauskaite and Fred Friedberg teamed up to review the literature on how recovery in ME/CFS is defined. This paper was published in the journal Quality of Life Research in May 2014. The investigators identified 22 studies on ME/CFS recovery and found that each defined recovery differently – which could explain the range in recovery rates of 0-66% described in these studies. They concluded that a consistent definition for recovery – one that captures a return to health and includes assessments of fatigue and function – is needed. Ways to think about recovery were provided including concepts such as recovery time following physical and mental exertion. Importantly, they note that patients' perspectives on recovery could help inform treatment, education and outcome studies. http://www.ncbi.nlm.nih.gov/pubmed/24791749

• On Fibromyalgia

"Fibromyalgia is NOT a diagnosis of exclusion." In "The 2013 Fibromyalgia Alternative Diagnostic Criteria: Interpretation for Patients and Providers" Celeste Cooper, R.N., compares the latest FM diagnostic criteria, 2013AltCR, with the 2011 "modified" criteria, 2011ModCR, and the older 1990CR. Read the article at http://www.prohealth.com/library/showarticle.cfm?libid=19197

Melatonin to ease fibromyalgia pain? "Melatonin analgesia is associated with improvement of the descending endogenous pain-modulating system in fibromyalgia: a phase II, randomized, double-dummy, controlled trial." This study, conducted in Brazil, found that melatonin alone or associated with amitriptyline (brand name: Elavil) was better than amitriptyline alone in improving fibromyalgia pain as measured by several scales, whereas its association with amitriptyline produced only marginal additional clinical effects. The authors suggest that this is due to melatonin's effect on the inhibitory endogenous pain-modulating system. To read the abstract or access the full text of this paper, see http://www.biomedcentral.com/2050-6511/15/40/abstract#

Association News

• Volunteer profile – Brian Holliday, 2014 BIDMC Community Health Fellow

Brian, an employee of Beth Israel Deaconess Medical Center in the Surgery/Urology Department, was selected by BIDMC as a 2014 Community Health Fellow in recognition of his volunteer work as a support group leader with the Massachusetts CFIDS/ME & FM Association.

Brian writes:
"I have been involved with the Boston Fibromyalgia/CFIDS support group since inception over two years ago and have served as facilitator, coach, confident, friend, coordinator and/or shoulder... My participation has persisted because there exists a strong local demand and need for such a support group. Also, it's in my blood as a compassionate health care practitioner who relishes in the "Human First" approach to life and well-being...Although the number of volunteered hours has recently dropped secondary to other commitments, I have and continue to regularly contribute from 3-6 hours monthly; inclusive of the group meeting which is standardized as the second Tuesday of each month from 6-8PM." (Note: this group meets regularly at the St. Margaret's Center of St. Elizabeth's Hospital in Brighton, MA.)

Our Association received a $1000 grant in Brian's honor from Beth Israel Deaconess Medical Center to further our work in educating patients and health care providers, and providing services to ME/CFS and FM patients. The purpose of the funding is to support the volunteer activities of BIDMC employees while strengthening community programs committed to improving health outcomes in the greater Boston area. We thank you, Brian, for your service!

If you work for or are retired from a small or large corporation or health care company, see if your employer supports your service as a volunteer.

• School Health Institute – Hyannis, MA.

For the 3rd year, representatives from our Association attended the School Health Institute, an educational conference for school nurses and school nurse supervisors. We distributed over 70 educational packets on pediatric ME/CFS, which included resources for families and educators as well as medical information on the illness as it affects children of school age. Thanks to our volunteers Bonnie and Libby who attended the conference.

To access the contents of our 2012 CD, Pediatric ME/CFS: Resources for Patients, Parents, Schools and Clinical Practitioners, please visit http://www.masscfids.org/privatefiles/pediatricresourcecd2012/TABLE_OF_CONTENTS.html

• Pathways to Prevention update

Massachusetts CFIDS/ME & FM Association was one of seven ME/CFS patient organizations that signed this letter to the NIH Pathways to Prevention working group, requesting a change in the agenda to include a full discussion of the issues surrounding multiple case definitions at the meeting scheduled for December, 2014, and an extension to the public comment period following the issuance of the draft report in December. There has been no response to this letter to date. Read the entire letter here.

Staying in touch with MassCFIDS

• Follow us on Facebook – for weekly updates, research news, and announcements.

Due to recent changes in Facebook policy, to see postings to our page it's not enough to "Like" the page. If you "Like" us, you may get some updates posted to your news feed, but it is likely that you won't get them all. Instead, bookmark the page and go to it at least once a week to see the new posts. You don't need to be logged in to Facebook or even have a Facebook account to see the page. But you need the entire URL: https://www.facebook.com/pages/Massachusetts-CFIDS-ME-FM-Association/1417893258457858

• If you are signed up to receive our newsletter and you change your email address, please let us know! You can sign up for the newsletter again with your new address, or send us a note about your new email address via Contact Us.

How you can help yourself and others

• Five Ways You Can Be An Activist - #1 Don't be alone

Even if you feel isolated, you can reach out to someone – by phone, through a support group, talking with a friend or fellow patient. If you are "wired" you may have already connected to online groups, or joined a local patient community such as our Association. There is strength and support in numbers. Those who work together to build the patient community need to know you are out there – why else would we do this work? If you are online, support patient associations or ME/CFS and FM causes around the world by voting for them in "contests" that provide cash prizes.

• Amazon Smile

Contribute funds to our Association at no cost to you! A portion of the sales price of most items you buy from Amazon.com will be sent to our Association every quarter. To set this up, click the Amazon Smile graphic on our home page, or click here on Amazon Smile. If you need to search for Massachusetts C F I D S Association in the charities list, and be sure to put spaces between the letters C F I D S. Then start your shopping from smile.amazon.com.

• Make a contribution to ME/CFS research

At the request of some of our members, our contribution page for Dr. Lipkin's Microbiome Discovery Project has re-opened, and contributions to this project will be accepted until 9/30/2014.

• Can you volunteer a few hours a month? Here are some specific ways you can help!

o Editor - Help write our monthly newsletter and/or school nurse newsletter. Content is provided - you just need to create the compelling, clear wording, and create a format that is interesting and easy to read (in other words, better than what you see here!)

o Update our database – contact those whose email is bouncing - by postcard or phone. We don't want to lose touch with anyone!

o Are you analytic and techie? Look at our website's Google analytics reports and let us know how we can make our website better!

o Medical educator - research medical/health care professional meetings in Massachusetts and find out if we can set up a table to distribute information on ME/CFS to doctors and other health care professionals.

o For someone local to Natick, MA: Assist our clerk - Take notes at Board meetings (need to attend in person). For this important task, we need a clear-headed accurate note-taker who can commit to attending 5 Saturday meetings during the year.

If you could help in any of these ways, please Contact Us. You need basic computer skills and ability to work independently. Your contribution of time and skill will make a difference!

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