In this month's newsletter:

  • Meet our New Board Members
  • February Sunday Conversations with MassME
  • Important Request from our Patient Services Coordinator
  • Long Covid Brain Scan Study
  • In Memoriam - Ronald G. Tompkins, MD, ScD
  • Latest Articles, Events, and Links

 

Meet our New Board Members

With the vote of our membership now completed, we welcome our new board members, Attorney Ron Belluso and Dr. Hayla Sluss

Ron Belluso HeadshotAttorney Ron Belluso was born in Warwick, Rhode Island and is a graduate of the Roger Williams University School of Law. During law school, Mr. Belluso served as both a research and teaching assistant. In addition, Mr. Belluso has pro bono experience helping low-income tenants navigate the housing laws while working at Rhode Island Legal Services in Providence, Rhode Island. Attorney Belluso is a member of the Massachusetts Bar Association and the National Organization of Social Security Claimant’s Representatives (NOSSCR). Currently, attorney Belluso focuses his practice on Social Security Disability and workers compensation for Keches Law Group, P.C. where he is devoted to helping the disabled and injured.

 

Hayla Headshot

Hayla Sluss, Ph.D. (Biochemistry), was born in Brazil. She is an Assistant Professor at the UMass Chan Medical School, Worcester, MA.          Throughout her research career, she has researched the role of the tumor suppressor p53 in the childhood disease Ataxia telangiectasia (A-T),      mitochondrial function and metabolism.

Read about all our Board members                      Learn more about Board service

 

Sunday Conversations with MassME

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A monthly speaker series on a wide variety of topics

Please join us on the 3rd Sunday of each month at 4:00 p.m.

Free and open to everyone

February Topic: "Applying for Social Security Disability Benefits if You Have ME/CFS or Fibromyalgia”

The presentation will also be relevant to Long Covid and Chronic Lyme Disease.

Sunday, February 20th at 4:00 p.m. ET on Zoom.

Featured speakers are MassME member Ken Casanova, author of MassME's Disability Handbook, who has guided many, many people through this process over the years, and Atty. Ron Belluso, a MassME Board member whose practice focuses on Social Security Disability and workers compensation at Keches Law Group, P.C. 

Presentations will be recorded for later viewing. Registration is required.

CLICK HERE FOR DETAILS

 

Headshot Ken CasanovaImportant Request from our Patient Services Coordinator, Ken Casanova   

Please help us add caregivers to our Referral Database.

We especially need Functional Medicine Doctors, Bodywork Therapists, and Social Workers.

Read Ken’s personal appeal and use our Provider Recommendation Form for referrals.

 
 

Brain Scan Study

Michael Van Elzakker, Ph.D. is recruiting adults for a brain scan study of Long COVID at MGH Boston. 

The study is designed to test a specific hypothesis about the cause of Long Covid.  It is not a treatment study. 

If you are interested as a patient or healthy control, contact This email address is being protected from spambots. You need JavaScript enabled to view it. or call 617-726-8120.

 

In Memoriam - Ronald G. Tompkins, MD, ScD

 Ron Tompkins edit

It is with great sadness that we report the sudden passing of Ron Tompkins, MD, ScD.

The Massachusetts ME/CFS & FM Association was fortunate to be able to collaborate on a number of projects with Ron, and he was always extraordinarily generous with advice and guidance.

Ron was incredulous of the lack of federal funding for ME/CFS and, while attending to his many research and leadership responsibilities, he was building a pipeline to congressionally directed research programs (CDMRP), which he believed to provide the best opportunity for meaningful increases in federal funding.

The Massachusetts ME/CFS community has lost a strong ally and a good friend.

Read Ron Tompkins's Full Tribute

 

Latest Articles, Events and Links

There is so much important information to share!
Here are our highlights for this month.

 

Solve M.E. will host a virtual booth February 9-11, 2022 during a landmark leadership conference sponsored by Georgetown University and The Foundation for Total Recovery.
The conference will feature distinguished specialists from around the world, and will offer a rethink of how to approach, examine, and treat ME/CFS, neuropsychiatric disorders, PANS/PANDAS, chronic Lyme, fibromyalgia, and Long Covid.

 

The Long Covid Research Boom
Cort Johnson's latest blog has an excellent summary of current Long Covid research efforts and how that may help ME/CFS and FM research. He surveys research studies worldwide that will track hundreds to thousands of COVID-19 patients each in order to understand the development of Long Covid, including ones by well known ME/CFS researchers like Nancy Klimas (Nova Southeastern University) and Lenny Jason (DePaul University). He also gives an overview of some of the large studies funded by the congressionally mandated $1.15 billion Recover Act that NIH is charged with disbursing.

 

Monthly ECHO (Extended Care Health Options) webinar on Long Covid and ME/CFS
Treatment approaches for ME/CFS are being featured in a new monthly ECHO Program, sponsored by the CDC, Family Health Centers of San Diego, University of Colorado Anshultz Medical Campus, University of Washington School of Medicine, and the University of New Mexico Health Sciences. The series, entitled “Long COVID & Fatiguing Illness Recovery Program” will run for a year and is presented monthly. Learn more about the innovative and highly regarded Project ECHO.

 

Cayman Currents features ME/CFS
Cayman Chemicals, a premier provider of chemical reagents used by medical researchers worldwide, featured ME/CFS and POTS in their widely read periodical, Cayman Currents. According to Hayla Sluss, board member and Assistant Professor at the UMass Chan Medical School, Worcester, MA: "this is a real milestone...they are treating ME/CFS like any other disease."   Thank you, Cayman Chemical!

 

For our New York Subscribers
Our friends at ME/CFS Advocates of Rochester are looking to expand their referral database of "ME/CFS Friendly" providers in Upstate New York. If you have seen a provider in the Rochester area that you would recommend to other patients or caregivers, please fill out this form.