- Last Updated: 11 September 2021 11 September 2021
In this month's newsletter:
- Invisible Disabilities Panel Discussion, September 15, 12 noon
- MassME Annual Meeting: NIH Research Update, October 23, 12:30 PM
- Research Studies Need You!
- Mayo Clinic Proceedings Article on ME/CFS
- Beyond the Symptom: The Biology of Fatigue Conference, September 27-28
- Solve ME/CFS Initiative Lecture Series on Long COVID, Part 2, September 20
- NIH Seeks Public Comments on Gaps in Women's Health Research
Invisible Disabilities: Long COVID and Other Post-Infectious Chronic Illnesses, Wednesday, September 15, 12 noon ET
The Health and Disability Partnership at the Massachusetts Department of Public Health, in conjunction with the Massachusetts ME/CFS & FM Association, invites you to a Zoom webinar. Imagine getting what you think is a common cold or flu, or even an insect bite, and then never getting better. Public health experts join a diverse panel to discuss post-infectious chronic illnesses and disabilities, including Long COVID, Lyme Disease and ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome). See the event flyer here (or watch the promotional video with audio description) and register here. Registration is open until right before the event. Thanks to our friends at #MEAction for making the introductions that made this event possible!
MassME Annual Meeting, Saturday, October 23, 12:30 - 4:00 PM ET
Join us for our virtual Annual Meeting on Saturday, October 23, 2021. We are delighted to announce that we will have presentations from researchers in the NIH-funded ME/CFS Collaborative Research Network, including Vicky Whittemore (NIH), Avi Nath (NIH), Ian Lipkin (Columbia), Derya Unutmaz (Jackson Laboratory), Maureen Hanson (Cornell), and Cindy Bateman (Bateman-Horne Center). Attendance is free for members, so join or renew today! Watch your email for registration information for members (September 13th) and for the general public (September 17th).
Research Studies Need You!
Tufts University Study on ME/CFS Health Assessment Questionnaires. Tufts is seeking people with an ME or CFS diagnosis to participate in this online study: www.tinyurl.com/TuftsMECFS. The study presents good and bad questionnaires that have been used in ME and CFS research. Many of the questionnaires may be frustrating or upsetting because they are not appropriate for ME or CFS, but please give the response you think is most correct, even if none of the options are right. It is a study about how people answer these questionnaires. Participation will take about an hour, but you can stop and return as long as you leave your internet browser window open.
Study of Brain Blood Flow in Severe ME/CFS Patients. Michael VanElzakker and Kenneth Kwong at Mass General Hospital/Harvard Medical School are conducting a functional magnetic resonance imaging (fMRI) study of blood flow in the brain. They are looking for participants with severe ME/CFS. The study involves lying flat in the scanner -- there are no injections or blood draws. A wheelchair is available at the study location. Participants will receive $75 and may request a high-resolution image of their brain. If you think you could participate please contact Michael VanElzakker's team at HBUES at mgh dot harvard dot edu.
Mass General Study on Vitamin B3 Treatment for Long COVID. Did you have COVID-19 at least two months ago and are still experiencing symptoms? This study will examine whether Niagen, a safe dietary supplement, can improve recovery in individuals with "brain fog" and other neurological and physical symptoms that have persisted for at least 2 months after having COVID-19 (Long COVID). The study involves 6 visits over 6 months at MGH-Charleston Navy Yard and participants will be compensated. Learn more here or contact Gabriel González Irizarry at COVIDNiagenStudy at mgh dot harvard dot edu or (617) 726-2671.
Mayo Clinic Proceedings Article on ME/CFS
The Mayo Clinic Proceedings published an article on the diagnosis and management of ME/CFS by the ME/CFS Clinician Coalition. The article also highlights key biological impairments in ME, the need to identify and treat comorbidities, why CBT/GET is not recommended, and the link to Long COVID. The published article is here and is open access. Mayo Clinic Proceeding also posted a video of Dr. Lucinda Bateman discussing the article on its Youtube channel.
Beyond the Symptom: The Biology of Fatigue (September 27-28, 2021) is a joint workshop organized by the Sleep Research Society and the Neurobiology of Fatigue Working Group of the NIH Blueprint Neuroscience Research Program, with support from the Blueprint Neuroscience Research Program. The workshop will be held via Zoom webinar from 10:00 am to 6:00 pm Eastern time on both days. Please go to this link for more information about the workshop and to register to attend.
Long COVID: What do we know so far? is a three part lecture series offered by Solve M.E. The second lecture is Monday, September 20 at 2:30 PM ET and features Dr. Bhupresh Prusty (University of Wuerzburg). Register here. View the video of the first lecture here.
NIH Seeks Public Comments to Help Identify Gaps in Women's Health Research
In preparation for the congressionally requested Advancing NIH Research on the Health of Women: A 2021 Conference, NIH is inviting comments from the extramural scientific community, professional societies, and the general public to assist in identifying women's health research gaps and pitfalls in clinical practices. Comments received will be used to inform discussion and help shape the direction and scope of the conference.
Volunteer with Us!
Looking for a way to contribute your talents and energy to an important cause? Look no further! Check out our volunteer page for great volunteer opportunities or email us at volunteer at massmecfs dot org and let us know what you are interested in doing.