Dear Friend,
It has been a busy March and we are gearing up for an even busier April with the Washington DC Advocacy Day on April 3rd and the NIH Conference on April 4th and 5th. In this issue, we have an advocacy alert about a Veteran's Administration proposal, an invitation to join a research study at MGH, an arts and culture benefit with EBT cards, and a way for you to help us get free advertising in the Boston Globe.
Washington DC Lobby Day, organized by Solve ME/CFS and #MEAction, will take place on Wednesday, April 3, 2019. More than 200 advocates from across the country will be meeting with congressional representatives. We have eight people going from New England and will meet with all 11 members of the MA delegation, plus members of the VT and Maine delegations. You can participate by writing a letter to your Senator or Representative, describing your personal ME/CFS story. If you send these letters to us at general "at" massmecfs "dot" org, we will hand deliver them on April 3rd.
The NIH Conference "Accelerating Research on ME/CFS" will take place April 4th and 5th on the NIH campus in Bethesda, MD. The conference is for researchers, but members of the public are welcome to attend and it will be videocast. Please register here to attend in person or remotely. Even if you can only watch part of the conference, we hope that you will sign up. This is an important opportunity for the patient community to underscore the need for more research.
Tell the Veterans Administration what you think about their proposal to change the name and diagnostic criteria for ME/CFS in the Veterans Administration Schedule for Rating Disabilities (VASRD). The proposal is to:
a) Adopt the name “systemic exertion intolerance disease (SEID)/chronic fatigue syndrome (CFS)”
b) Adopt Fukuda as diagnostic criteria – including its symptom requirements and diagnosis by exclusion.
It is important to note that the proposal specifically states the VA intends to adopt the National Academy of Medicine (NAM, formerly the Institute of Medicine, IOM) criteria as rolled out by the CDC on its website in July of 2017. But then, with no explanation, the proposal instead recommends the adoption of Fukuda and the name SEID/CFS.
Fukuda is outdated and was dismissed by the NAM because it does not require hallmark criteria such as post-exertional mailaise (PEM) and would thus include patients who do not have ME/CFS. While the NAM originally recommended the name SEID, HHS adopted the term ME/CFS. No US medical education provider or medical association has adopted either SEID or SEID/CFS.
The VA’s adopting Fukuda at this time is clinically indefensible and will do a serious disservice to US veterans seeking appropriate medical care and disability for ME/CFS. Further, the VA’s adopting a different name and diagnostic criteria than that being rolled out by CDC and other medical education providers in the United States will create unnecessary confusion and perpetuate diagnostic inaccuracy in the US medical community.
This proposal is open for public comment until April 8th, 2019. You can submit comments by mail, online, or by fax (contact details below). Comments should indicate that they are submitted in response to ‘‘RIN 2900–AQ43—Schedule for Rating Disabilities: Infectious Diseases, Immune Disorders, and Nutritional Deficiencies.’’ Please let the VA know what you think about their proposal. If you can, please write a comment in your own words. They will discount multiple comments with identical language. Comments will be publicly viewable during the comment period. The Federal Register Announcement for this proposal can be found here.
Written comments may be submitted by mail or hand-delivery to:
Director, Regulation Policy and Management (00REG)
Department of Veterans Affairs
810 Vermont Ave. NW, Room 1063B
Washington, DC 20420
Submit comments online here.
Comments may be faxed to (202) 273-9026.
Study: Dr. Michael VanElzakker and colleagues at the Massachusetts General Hospital (MGH) are conducting a research study to examine the neural mechanisms that cause chronic fatigue syndrome (CFS) symptoms to worsen the day following physical exertion. Participation will involve functional magnetic resonance imaging (fMRI) scanning on two separate days, 1-3 days apart, and will take approximately 6 total hours. Each scan will take approximately 1 hour. After the first day's scan, participants will be asked to pedal on an elliptical device at a moderate pace while pedal resistance steadily increases until you cannot maintain pace (usually approximately 6-8 minutes). Participants will then return to be scanned again when their symptoms are worst, 24-72 hours later.
Who is eligible: Adults (18-65 years old) who:
Have been diagnosed with chronic fatigue syndrome (CFS) by a medical doctor, or
Are healthy and do not have CFS, especially healthy siblings of CFS participants.
Participants will be compensated $150 for their time.
For more information: Please email Paula Sofia Lara Mejia at pslaramejia "at" mgh "dot" harvard "dot" edu, or call her at 617-726-8120,
The Massachusetts Department of Transitional Assistance offers the EBT Card to Culture program with discounted or free admission to a wide variety of cultural and arts institutions and events in Massachusetts. The full list can be found here. A few examples are $5 tickets to the American Repertory Theater, free tickets to the Boston Symphony Orchestra, $2 admission to MassMOCA, free admission to the Science Museum and many more.
Do you subscribe to the Boston Globe, either in print or online? You may have received an email from the Globe about their GRANT program which awards free advertising to non-profits. You can help us win free advertising by clicking on the button in the email or by going here. Submit your subscriber number (found on your invoice) and type CFIDS in the search box. Choose Massachusetts CFIDS/ME & FM Association (our old name). The deadline is April 30th, 2019. More information about the Boston Globe GRANT program is here. Thank you!
We are always in search of more people to help with our activities. We particularly need assistance with organizing events, revamping our website, and maintaining our database. If you want to volunteer, please let us know through the Contact Us form on our website. Or join our next volunteer phone call on Monday, April 8th at 12 noon (dial 712-775-8962, then enter 698-286). And, of course, we always welcome finanical support for our activities in advocacy, education and patient services.
Warmly,
Leah Williams
Association President