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: 03 September 2017 03 September 2017
A support group member in another state, herself a long-time ME/CFS advocate, recently remarked that no one in her support group seemed interested to hear about advocacy activities. Their concerns were with sharing their symptoms and getting ideas from others on how to treat them, where to find knowledgeable doctors, and finding support in the group – all legitimate and powerful concerns, totally appropriate for members of a support group. Still, she wondered, why aren’t more ME/CFS patients interested in what other patients and family members (advocates) are doing to bring more public and government awareness and funding to their disease?
- Last Updated: 11 August 2017 11 August 2017
Save the Date! – Nov 4, 2017
The Association’s annual public lecture will be held on Saturday, Nov. 4, 2017, at Newton Wellesley Hospital. Our speaker this year is Linda Tannenbaum from the Open Medicine Foundation, where some very exciting research is underway.
Mark your calendar now. More details will follow!
Research Symposium at Stanford THIS SATURDAY will be live-streamed!
COMMUNITY SYMPOSIUM at Stanford University (on behalf of Open Medicine Foundation)
We are pleased to announce that the Community Symposium on the Molecular Basis of ME/CFS at Stanford University on Saturday, August 12th will be live-streamed. The event will begin at 9:00 AM Pacific Time and will conclude at 5:00 PM Pacific Time. Patients, parents, researchers, clinicians, family and friends are invited to register to watch all or part of the program from anywhere in the world via live-stream.
Pre-registration is required. There is still time to register to watch the program live. Please tell a friend - forward this announcement to share this unique experience with our worldwide community.
Ronald W. Davis (Stanford)
Robert Naviaux (UCSD)
Chris Armstrong (U Melbourne)
Jonas Bergquist (Uppsala U)
Maureen Hanson (Cornell)
Neil McGregor (U Melbourne)
Baldomero Olivera (U Utah)
Mark Davis (Stanford)
Alan Light (U Utah)
Alain Moreau (U Montreal)
Wenzhong Xiao (MGH)
The Symposium will be made available on OMF's YouTube Channel for free or you can order a DVD for $15 (which includes shipping). All orders are due by September 10. Order your DVD today.
For more information, see www.omf.ngo/community-symposium
Tell Congress "Don't defund ME/CFS!"
Urge your Congress people to restore funding for CDC (thanks to Solve ME/CFS Initiative)
Last week, the House Appropriations Subcommittee on Labor-HHS zeroed out the $5.4 million line item for Chronic Fatigue Syndrome at the CDC....again!
Tell your members of congress to restore the funding for ME/CFS for next year’s budget. We cannot abandon the progress we've made so far!
Here's a simple form you can fill out to send a personalized letter directly to your U.S. Senators and Congressperson who will be voting on the 2018 Federal Budget. We want as many letters as possible from as many states as possible! Here’s another chance to make ME/CFS visible to your representatives in D.C. Be sure to personalize your letter by writing a sentence or two about yourself in the “Add a Personal Message” box. Your personal message will appear at the beginning of the letter. To access the form: https://solvecfs.secure.force.com/actions/kwac__takeaction?actionId=AR00009
Action is needed NOW, since the Senate will begin work on the budget as soon as they return in September.
NASA 10-minute Lean Test for Orthostatic Intolerance
Have you been tested for Orthostatic Intolerance?
OI is one of the 5 key symptoms of ME/CFS identified in the Institute of Medicine report. Although it appears to be more common in children and adolescent patients, many adult patients also have this condition but it may not have been recognized. It is treatable! There is a simple test which requires no special equipment that your doctor can do can show if you have OI.
Here’s one patient’s experience with the test. The page has links to more description about the test and complete instructions that you can take to your doctor.
We need your help to identify doctors who can treat ME/CFS and FM patients!
Here’s a note from our Patient Services team. Help finding doctors is our most requested service. We have very few doctors to recommend – we need more names! Please help us by letting us know of any doctor you see who has helped you. They don’t have to be ME/CFS or FM experts, just open-minded, respectful, and willing to learn and work with you to help you feel better. Our focus is on doctors in Massachusetts or surrounding states.
Dear fellow patients, family members and friends,
One of the most important of patient needs is to find physicians and health care providers that are knowledgeable about ME/CFS, fibromyalgia, Lyme Disease, and other associated illnesses.
One of our major services is health care provider referrals. And our primary source for these referrals is the patient community.
We especially need patients and their families to tell us about physicians/health care professionals they've seen who are able to provide diagnosis and treatments.
We are asking for your help. Please click this link: https://www.masscfids.org/provider-recommendation-form to fill-out a questionnaire on health care professionals with whom you've had significant contact. We understand you are sick and may not have a lot of energy at any one time, so go at your own pace. If you can provide feedback on more than one doctor or other provider, please use multiple forms.
We want to assure you that any and all information you provide will be kept strictly confidential and your name will never be associated with the information. Also, we are careful not to overload any one doctor with patient referrals.
We would like to get both positive and negative feedback so that we can help patients obtain the best referrals possible.
By taking a little time, you will be helping patients who need to obtain diagnosis and treatment.
THANK YOU SO MUCH.
Patient Services team, Massachusetts CFIDS/ME & FM Association
This is Part One of our summer newsletter. Part Two will follow shortly and will focus on recent research and advocacy.
- Last Updated: 23 June 2017 23 June 2017
The long-awaited Pediatric ME/CFS Primer, written by an international group of pediatric ME/CFS expert clinicians, is now published and freely available.
Lead author Peter Rowe states, “Three years ago, Ken Friedman, Alan Gurwitt, and Rosemary Underhill invited an international group of experienced ME/CFS clinicians to write a comprehensive guide to the diagnosis and management of ME/CFS in adolescents and young adults. The IACFSME had published a guide for adults, but there was no similar publication to help clinicians manage the unique aspects of ME/CFS in children and adolescents.”
Not only does the Primer contain a wealth of practical clinical advice, it also includes facts sheets and sections on working with schools and a sample physician’s letter to the school, authored by Faith Newton, Ed. D. It is a valuable guide for health care providers, parents and families, and school personnel.
Front. Pediatr., 19 June 2017 | https://doi.org/10.3389/fped.2017.00121
"Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer"
Peter C. Rowe, Rosemary A. Underhill, Kenneth J. Friedman, Alan Gurwitt, Marvin S. Medow, Malcolm S. Schwartz, Nigel Speight, Julian M. Stewart, Rosamund Vallings and Katherine S. Rowe
Faith Newton Ed.D., Department of Education, Delaware State University, Dover, DE, USA contributed Section “The School System” and Appendix D.
Evan Spivak, DDS, Department of Pediatric Dentistry, Rutgers School of Dental Medicine, Newark, NJ, USA contributed Section “Oral and Dental issues.”
Appendix F is based upon “Considerations Prior to Surgery for Adult ME/CFS Patients” by Dr. Charles W Lapp MD, Director, Hunter-Hopkins Center, Charlotte, NC, USA, with permission.
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex disease that affects children and adolescents as well as adults. The etiology has not been established. While many pediatricians and other health-care providers are aware of ME/CFS, they often lack essential knowledge that is necessary for diagnosis and treatment. Many young patients experience symptoms for years before receiving a diagnosis. This primer, written by the International Writing Group for Pediatric ME/CFS, provides information necessary to understand, diagnose, and manage the symptoms of ME/CFS in children and adolescents. ME/CFS is characterized by overwhelming fatigue with a substantial loss of physical and mental stamina. Cardinal features are malaise and a worsening of symptoms following minimal physical or mental exertion. These post-exertional symptoms can persist for hours, days, or weeks and are not relieved by rest or sleep. Other symptoms include cognitive problems, unrefreshing or disturbed sleep, generalized or localized pain, lightheadedness, and additional symptoms in multiple organ systems. While some young patients can attend school, on a full or part-time basis, many others are wheelchair dependent, housebound, or bedbound. Prevalence estimates for pediatric ME/CFS vary from 0.1 to 0.5%. Because there is no diagnostic test for ME/CFS, diagnosis is purely clinical, based on the history and the exclusion of other fatiguing illnesses by physical examination and medical testing. Co-existing medical conditions including orthostatic intolerance (OI) are common. Successful management is based on determining the optimum balance of rest and activity to help prevent post-exertional symptom worsening. Medications are helpful to treat pain, insomnia, OI and other symptoms. The published literature on ME/CFS and specifically that describing the diagnosis and management of pediatric ME/CFS is very limited. Where published studies are lacking, recommendations are based on the clinical observations and practices of the authors.
- Last Updated: 29 May 2017 29 May 2017
In recognition of May 12th, last week and this week (May 8-19) our Association is participating in a national ME/CFS advocacy effort co-led by Solve ME/CFS Initiative and #MEAction. We have completed Week 1, which was “local” week; across the country, ME/CFS advocates visited the local district offices of their U.S. Congressmen/women, and asked for Proclamations from local governments (state, city/town) declaring May 12th ME/CFS Awareness Day.
L to R: Rivka Solomon, Rick Glassman (Advocacy Director, Disability Law Center, Boston), Dr. Michael van Elzakker (ME/CFS researcher MGH and Harvard Medical School), Sen. Cynthia Creem, Robert Price, Senate President Stan Rosenberg, Lt. Governor Karyn Polito, Charmian Proskauer (President of Massachusetts CFIDS/ME & FM Association), Dmitri Gridnev (representing Rep. Ruth Balser), Alina Kaminsky, Leah Williams, Elizabeth Potter, Robert Robitaille, Kathy Robitaille, Nancy Smith (those without titles are all members/volunteers representing Massaschusetts CFIDS/ME & FM Association).
This week, more than 50 advocates, including Leah Williams from our Association, have descended on Washington, DC, to visit the national offices of Representatives and Senators, share their own ME/CFS stories and invite their elected officials and staffers to a Congressional briefing on ME/CFS, sponsored by our own Massachusetts Senator Ed Markey, tomorrow, Thursday, May 18.
Here in Massachusetts, we organized our members and friends across the Commonwealth, and last week they made visits in 7 of our 9 Congressional districts. Thank you all! We also encouraged and supported advocates in six other states who contacted us for information and assistance.
In Congressman Joe Kennedy III's district office. L to R: Bob Robitaille, "Robie" Robitaille, James Cody - District Coordinator for Congressman Kennedy, Dr. Alan Gurwitt, Amy Cuzzupoli, Charmian Proskauer - President of Massachusetts CFIDS/ME & FM Association, Phil Chernin.
Members Margaret Lauritson-Lada and Susan Buckley at Rep. Michael Capuano's district office
N.H. advocate Grace Woodham with Patrick Carroll and Sharon Nichols at Rep. Carol Shea Porter's office in Dover, N.H.
Our members also got Proclamations for ME/CFS Awareness Day in 4 cities: Northampton, Pittsfield, North Adams and Cambridge, and one from the Commonwealth of Massachusetts. This helps increase awareness in our own cities and towns, especially if accompanied by articles or letters in local papers. Taking one extra step with the Proclamations, by inviting dignitaries for a “photo op” of the presentation, led to a series of very productive discussions with elected officials and supporters at the city and state level.
Advocates with Massachusetts State Representative Ted Speliotis (3rd from left)
Advocates with Cambridge, MA, Mayor Denise Simmons at Cambridge City Hall
Many thanks to our national advocacy leaders, Emily Taylor from Solve ME/CFS and Gail Cooper from #MEAction! Thanks to Bob and Kathy Robitaille, our Association volunteers who coordinated our state-wide effort, to super advocates Rivka Solomon, Mark Camenzind and Harvey Keith Carden who led the Proclamation project, and to all of you who participated in so many ways! We are Creating Awareness!! And taking Action!!
- Last Updated: 30 August 2017 30 August 2017
Board member Leah Williams advocated for more funding for ME/CFS research during several meetings with Massachusetts members of congress in Washington DC in mid-March 2017. These meetings were some of the 30 meetings held by a group of advocates, coordinated by the Solve ME/CFS Initiative and the Congressional group of the U.S. Action Working Group.
Left to right: Leah Williams, patient advocate and board member of Massachusetts CFIDS/ME & FM Association; Carol Head, President of SMCI; Senator Ed Markey (MA), Emily Taylor, SMCI Director of Advocacy and Public Relations; Mike Atherton, member of SMCI board of directors, and Gail Cooper, #MEAction Congressional Chair
Left to right: Carol Head, President of SMCI; Emily Taylor, SMCI Director of Advocacy and Public Relations; Senator Elizabeth Warren (MA) and Leah Williams, patient advocate and board member of Massachusetts CFIDS/ME & FM Association.
For a more complete report on the week's activities, see "Solve ME/CFS Initiative storms DC to tackle the Federal Budget."
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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.