Since a new coronavirus emerged from Wuhan, China late in 2019, some 3.8 million cases and 265,000 deaths have been reported world-wide. Governments are focused on treating patients acutely sick with COVID-19, the disease caused by the new virus SARS-CoV-2, and slowing the spread of the virus. However, a second crisis of long-term disability is
It’s here. It’s #MillionsMissing week! Are you ready to gather allies, express your art, share your story, tune into some great performances, and celebrate our community? There is a lot to do, and you should only participate when and how you are able. Our numbers are mighty, so you are not in this alone. Together, we
Over the last many months, social media platforms like Twitter, Facebook, and YouTube have been flooded with disinformation about COVID-19. We wanted to make you aware of the problem, equip you with tools for how to recognize and respond to disinformation, and enlist your help keeping our community safe. According to numerous reports, much of this disinformation comes from organized
Ellie Rushton, from Birmingham UK, recently raised an amazing £1000 for #MEAction UK, by doing 1000 bodyweight reps every day for 6 months! We are so thankful to Ellie for her determination to support #MEAction and people with ME. Please, find below a few words from Ellie about her experience! “When I started this fundraiser
In light of an oncoming wave of people experiencing post-viral complications and potentially post-viral ME, telling our story is more important than ever. “I would expect that people who have Covid-19 symptoms quite severely, of those, I would expect about 10% to have fatigue-like syndromes after 6 months, given current evidence.” – Professor Chris Ponting,
On April 13, NIH announced two new funding opportunities for ME/CFS research: PAR-20-165, Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) (R01 Clinical Trials Not Allowed) PAR-20-168, Research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) (R21 Clinical Trials Not Allowed) What is an R01? What is an R21? R01 and R21 are two common types of funding
#MEAction is going to embark on a four week campaign, #WeAreEssential, asking Congress to recognize that the disability/chronic illness community is ESSENTIAL and must be included in the next Covid-19 packages.
The National Institute of Health and Care Excellence (NICE) have suspended work on all guidelines currently in development due to the Covid-19 pandemic, including their update of the ME/CFS guideline, originally due to be published October 2020 and recently delayed by NICE to December 2020. We support NICE’s aim to keep healthcare professionals on the
At the Sundance Film Festival in January, I had the privilege of watching Crip Camp, a documentary film that premieres today on Netflix. It’s about building a community in spite of a world that excludes you; that often tries hard to deny your humanity or ignore your very existence. It’s about how that community birthed a disability
The All-Party Parliamentary Group (APPG) on ME held its first meeting on March 3, where biomedical research was discussed. Twenty MPs attended or sent staff to hear about the urgent need for biomedical research, following its inaugural AGM in January. Chaired by Carol Monaghan MP, the meeting was the first in a series that will
