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
Parents with ME have had to learn to be creative and flexible in their parenting.This will be key in responding to parenting during a pandemic. We have taught our children to wash their hands in hopes of avoiding seasonal illness. We have managed school holidays and cancelled plans. We can teach a master class in
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
The situation of COVID-19 is rapidly changing. We wanted to be optimistic that this situation would improve for the better, but even in the last 48 hours the situation has dramatically shifted. The WHO is officially classifying the virus a pandemic. COVID-19 is now affecting more than 127,000 people worldwide. We can’t in good conscience,
