- Last Updated: 26 March 2021 26 March 2021
In this month's newsletter:
- Big NIH ME/CFS Research Grant to UMass Medical School
- Pandemic Resources
- NIH Telebriefing, March 30th
- Advocacy Day, April 20th
- In Memory of Heather Colman-McGill
- Support Groups in March
Exciting News! Big ME/CFS Research Grant
We are thrilled to announce that the NIH has awarded a $2.5 million grant to the two-woman UMass Medical School research team of Liisa Selin, MD, PhD, and Anna Gil, PhD, for their work on ME/CFS. This grant builds on the research they did with a small seed grant from the Solve ME/CFS Initiative's Ramsay Program.
MassME is pleased to have supported this research team over the years, including notifying our newsletter recipients that these innovative researchers had received the Ramsey Award and needed blood donations. People responded enthusiastically, allowing Selin and Gil to move this necessary research forward. Additionally, the UMass Medical School researchers met with our Research Club and shared their cutting-edge findings. A video excerpt of that meeting can be found here and the research is summarized on this poster. It is also exciting to us that this money is coming to a Massachusetts institution. After all, Massachusetts is a medical hub for the world, and it should also be that for ME/CFS. For more details, read the MassME press release.
Thanks, Liisa Selin and Anna Gil, for all your hard work for our community!
A Year into the Pandemic
It is hard to believe that we are more than a year into the pandemic, but hopefully vaccines will bring much welcomed relief. Sadly, what our community feared is coming to pass -- COVID-19 is leading to a large number of survivors with long-term symptoms that often resemble ME/CFS. We are here to help. We have joined the Long Covid Alliance and we have put together a web page about lessons learned from ME/CFS that will be useful for the Long Haulers. Here are a few more resources:
A Comprehensive Guide for COVID-19 Long Haulers and Physicians. This google document was put together by the Covid-19 Long Hauler Advocacy Project and has a wealth of information about diagnostic testing, symptoms, co-morbidities, and how to advocate for yourself with doctors and in the workplace. Much of the advice is directly relevant for people with ME/CFS.
Long covid in primary care. If you want a visual summary, the British Medical Journal published this infographic for primary care physicians about initial assessment and ongoing management of long covid, much of which is applicable for people with ME/CFS.
Mark Your Calendar: NIH Update on Advancing ME/CFS Research, Tuesday, March 30
NIH is hosting a telebriefing about updates on their efforts to advance ME/CFS research on Tuesday, March 30, 2 - 3 PM ET. Click this link to join the telebriefing on March 30 -- preregistration is not required. Passcode is NIHMECFS. Participants may ask questions during the Q&A using the chat function.
Mark Your Calendar: Advocacy Day, Tuesday, April 20!
Advocacy Day, organized by Solve ME/CFS Initiative, will be virtual again this year. This is your chance to advocate on Capitol Hill in Washington, DC. Phone meetings with US Senators and Representatives will be on Tuesday, April 20th, 2021. The deadline to register for a meeting is April 6th. Click here to register and check out the schedule for the whole week here. Last year Massachusetts had a great showing with 28 advocates joining the meetings. Please let us know if you are from Massachusetts and register this year, particularly if you are a constituent of Reps. Moulton, Lynch, Keating or Trahan. Send an email to Bob Robitaille, our Legislative Coordinator, at advocacy at massmecfs dot org.
In Memory of Heather Colman-McGill
"Please be as vocal, public, ferocious as your time permits, in sharing my story...This situation must be heard" -Heather Colman-McGill
Heather died a little over a year ago after a long struggle with very severe ME/CFS. In one of her last messages, she asked that her story be used to raise awareness about this devastating disease. We have done that in a recent article on severe ME/CFS in the journal Healthcare that has been read by more than 1,100 people. To further raise awareness, Heather's mother asked that we hold a fundraiser in Heather's memory on her birthday, March 7th. She would have been 40 this year. Many of Heather's friends and family have donated for which we are very grateful. If you would like to join them, you can donate here.
Support Groups on Zoom!
DIY Club: Sunday, March 28, 5:00 PM (EST). Register here. Join our ongoing discussion of how to use a systematic approach to improve our physical well-being. This month's topic is hormones.
Questions? Comments? Need assistance? Email Jeanne Perrin, Support Group Coordinator, at supportgroups at massmecfs dot org or Direct Message (DM) her on Slack.
Welcome to our new Social Media Coordinator, Rebecca Redner
If you follow us on social media, no doubt you have noticed quite a bit more activity and more regular dissemination of information. Thank you Rebecca! If you’re interested in more frequent communications and interaction with others, head over to our channels and sign up!
You Can Help Us!
Volunteer! Find out more about all the exciting projects you can work on at our next volunteer meeting on Saturday, April 10th at 12 noon. Do you have web skills? Can you edit a video? Do you have fundraising experience? Do you want to help plan our next event? We have lots of projects and even if you only have an hour or two a month, we would love your help. Contact Loryn, our Volunteer Coordinator, at volunteer at massmecfs dot org.
Support our Work! We welcome financial donations to help us support people with ME/CFS and FM, and now Long COVID. All of our funding comes from individual donations and any amount will help. Please support us by becoming a member or donating now!