- Last Updated: 11 November 2017 11 November 2017
Tickets are still available if you act NOW! Don’t miss this event!
Award-winning film by ME Patient/Advocate Jen Brea is showing Sunday, November 12, at the historic Regent Theater in Arlington MA! The screening will be followed by a panel discussion moderated by WBUR Senior Correspondent and Host, Deborah Becker.
It's no surprise that @unrestfilm won #GlobeDocsFF Audience Award for Best Film.
Learn more and buy tickets. Members of MassCFIDS get a discounted ticket price if you purchase tickets online.
This event is being co-sponsored by a long list of health care, women’s, and arts organizations, led by the Massachusetts Department of Public Health. Invite your friends, family, and health care providers!
Thanks to some generous donors, if you are a health care provider or ME/CFS researcher, or a member of one of the 19 co-sponsoring organizations, you get in FREE! Please use this link to register for these complimentary tickets.
Our small team of volunteers is working hard to make this event a success. For an inside look at what we are doing, and why this is such a ground-breaking event for ME/CFS advocacy in Massachusetts, read this! Tweet and share this post on your Facebook Page!
A Woman Who Dared
Want to read an inspiring story? Patient/advocate/ME activist Rivka Solomon has published her essay,“A Woman Who Dared, With ME” in Jewish Women’s Archive (JWA). Rivka and her team have been working tirelessly to arrange and promote the Nov. 12 showing of “Unrest” on behalf of our Association and 18 other co-sponsors. If you can comment on Rivka’s story, that will tell the JWA that this story is important!
Follow up on Open Medicine End ME/CFS World Wide Tour event Nov. 4th
A large audience heard Linda Tannenbaum, CEO of Open Medicine Foundation, describe the latest research from the Open Medicine Foundation and answer our questions. We will be posting a video of the same talk, which she gave in NYC a few days before, along with her slides and a written summary of the important points in her talk. So if you couldn't attend in person you can still get the information. We'll let you know when the posting is available.
Important Announcement - Affordable Care Act
If you purchase your health insurance plan on the “open market”:
Open Enrollment for Health Plans on the exchanges is Nov 1 to Dec 15.
Sign up at www.healthcare.gov (in MA https://www.mahealthconnector.org/)
There has been a lot of confusion around the status of the Affordable Care Act this year. Bottom line is that the Affordable Care Act is still in effect. Note that there may be changes in the costs of the plans and the subsidies that are offered. What you had last year may NOT be the best plan for you this year, so be sure to compare plans and costs (including subsidies if you qualify) before making your choice.
Some Good News on ME/CFS!
From our friends at the ME Association in the UK: NICE decides to Fully Update its guideline on ME/CFS! (20 September 2017). This is a more detailed and informative piece than the other two posted earlier. It includes headings such as:
- Assessing the evidence
- Themes from stakeholder comments
The Journal of Translational Medicine is starting a new section, ‘Illnesses of Unknown Etiology’. This section aims to provide a translational medicine forum for the publication of research on illnesses, multisystem diseases and syndromes of unknown etiology. Examples of these include Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Fibromyalgia Syndrome. The Editorial announcing this new initiative goes on to describe the urgent need for more research on ME/CFS and fibromyalgia. The Journal of Translational Medicine is an open access journal.
Nationally syndicated “White House Chronicle” features ME/CFS and the need for research. Llewellyn King interviewed Dr. Walter Koroshetz of NIH’s National Institute of Neurological Diseases and Stroke, and Dr. Zaher Nahle, chief scientific officer of Solve CFS/ME Initiative on his program which aired on October 17, 2017. The 30-minute episode, which was filmed on the NIH campus in Bethesda, MD, just outside of Washington, D.C., is an examination and explanation of the four research centers for ME that NIH is establishing. This broadcast and the filming were made possible by Carol Head and the Solve ME/CFS Initiative. You can view the program here or here.
Ehlers-Danlos Syndrome Hypermobility and ME/CFS
Dr. Peter Rowe at Johns Hopkins was the first to note the correlation between Ehlers-Danlos Syndrome Hypermobility and ME/CFS in his pediatric patients. Here are new 2017 diagnostic criteria for EDS Hypermobility, updated from 1997. “Ehlers-Danlos Syndrome Hypermobility Type: A Genetic Predisposition to the Development of Various Functional Somatic Syndromes” explains why EDS may be an underlying feature of many syndromes for patients whose symptoms cannot otherwise be medically explained, including ME/CFS and fibromyalgia.
If you suspect EDS, please print off this one page PDF, and take it to your physicians. Any physician can do this evaluation, but if they suspect hEDS, they need to refer you to a geneticist to rule out the other types of EDS, which may be more serious.
Thanks to Facebook friend AH for sharing this.
“Orthostatic Intolerance, Part 1: Diagnosing OI”
“Orthostatic Intolerance (OI) is an integral part of ME/CFS and is present in most fibromyalgia patients and many of those with Lyme disease…The good news is that OI is easily diagnosed, effective treatments are readily available, and treating OI often improves all symptoms…” Thanks to Suzan L. Jackson and ProHealth for this excellent article.
Fibromyalgia in the spotlight
“Lady Gaga’s fibromyalgia puts illness in the spotlight"
Even though an estimated 5 to 10 million Americans are affected by fibromyalgia, the illness is often misdiagnosed and poorly understood. However, fibromyalgia received some much-needed attention recently when superstar Lady Gaga announced she has long struggled with the chronic pain condition. Marco Loggia (HMS/Mass General) is quoted.
Patients are needed to participate in a clinical research study evaluating ASP0819 and Placebo for the treatment of Fibromyalgia | Clinical Research Trial Listing (Fibromyalgia) (NCT03056690). This study is recruiting participants. It is to assess the effectiveness and safety of a new drug for pain relief in fibromyalgia.
"Fibromyalgia: Few New Treatments, But Understanding Continues to Grow," Healio Rheumatology, October 2017
There is nothing really new here, but the article is a good summary of the current state of knowledge. If you haven’t caught up on FM research in a while, this is a good article to read.
For those who like to plan ahead, Dr. Ann Louise Oaklander will be giving a lecture, "Small Fibers, Big Pain: New Research on Fibromyalgia and Small Fiber Neuropathy", on Monday Feb. 5 2018 at 5 p.m. in Cambridge MA. The event is sponsored by the Radcliffe Institute for Advanced Study, and it is open for registration now. For information about small fiber polyneuropathy, see our 2015 video featuring Dr. Khosro Farhad.