Halfway through summer, we have so much to report about our immense, day-to-day work advocating for M.E., for you, and for each other.
On the medical front, our ongoing, grant-funded project with Mayo Clinic Rochester continues to transform medical education at Mayo. Together, we have updated the ME/CFS homepage, written a Concise Clinical Review article that will debut in Mayo Clinic Proceedings with an attendant CME, and created a new diagnostic and treatment algorithm on AskMayoExpert, available to Mayo staff and subscribers. We will finish our project with extensive clinical education work this fall.
We’re bringing our expertise to the table by serving as a panelist for Project ECHO Long COVID and Fatiguing Illnesses, an ongoing medical education effort funded by CDC. And, we are participating in the NANDSC ME/CFS Research Roadmap Working Groups along with #MEAction volunteers.
On the advocacy front, we’re advocating for Congress to establish a COVID-19 Task Force to investigate our nation’s response to the pandemic, and are calling for ME and Long COVID to be a part of that investigation. We met with Senator Kirsten Gillibrand’s (D-NY) office this spring to discuss the legislation she’s proposed, and to educate her office about the importance of including ME.
On the community front, we held the 3rd Annual Severe ME Artists Project that featured beautiful, inspiring work from over 150 people! We announced #MEAction’s collaboration with Body Politic, and will now host Body Politic’s advocacy work as a project of #MEAction. We’ve held two amazing welcome meetings for new volunteers this summer, and are developing volunteer working groups to launch this fall!
On the press front, we’ve spent many long hours educating the media about the nature of post-exertional malaise, and why ME must be at the forefront of NIH’s Long COVID research. This season, we’ve had many in-depth conversations with reporters from The Atlantic, Stat News, the Washington Post, Nature, Muck Rock, and National Geographic about PEM, ME and the future of infection-associated chronic disease.
In the United Kingdom and Scotland, #MEAction UK volunteers participated in working groups developing the UK Government’s Department of Health and Social Care Delivery plan. #MEAction UK is are encouraging people to respond to make sure the voices of people with ME are heard. You can learn more and how to respond here. Plus, they recently challenged the the Journal of Neurology, Neurosurgery, and Psychiatry (JNNP) and the British Medical Journal of the removal of our Rapid Response to the article attacking the 2021 NICE guideline on ME/CFS. Read #MEAction UK’s response here.
Scotland has continued to campaign to get the 2022 NICE guideline on ME/CFS implemented. Our campaign included an event at the Scottish Parliament attended by 20 Members of the Scottish Parliament (MSPs), meeting with the Scottish Health Minister and regular meetings with civil servants. A total of 41 MSPs have engaged with us this year through meetings, signing our pledge, attending the Parliamentary event and attending MillionsMissing. You can learn more about #MEAction Scotland’s campaign here.
Research and Medical Education:
* Revamped MEpedia with a developer and project manager, work which will continue through the winter; worked on revamping our search tool to find ME-literate clinicians, which will finish this summer.
* Continued to do outreach to the press, individual researchers and clinicians, and research and clinical institutions to educate them on ME/CFS and Long COVID.
* Continuing to build a new site to highlight the amazing work of #MillionsMissing 2023 and creative pillow cases designed by the community.
* Hosted an extremely adapted yoga class with almost 200 attendees. Recording and mediations–coming soon!
* Submitted a response to The Guardian in reply to their article covering the publication in the JNNP of criticism of the NICE process and new ME Guideline. Read our letter here.
* Key partners in a project led by Action for ME to promote Dr Nina Muirhead’s training module on ME to healthcare professionals, including participating in podcasts on specific topics.