There is widespread anger in the ME community today as NICE announced that it will not be publishing their finalised guideline on ME/CFS after pressure from sections of the medical establishment. At #MEAction UK, we are furious that NICE have capitulated to vested interests of those who support graded exercise therapy instead of defending their
Category: Long Covid
Darren Randon, a poet, qualified teacher, community builder, facilitator, host and co-founder of Well Versed Ink from Thornton Heath, is launching a new group aimed at supporting Black and Black-mixed people with ME and/or long Covid in the UK. The group plans to create a safe space to share experiences and create community with the
#MEAction CA’s advocacy work resulted in getting an article & interview published in Medical Board of CA’s newsletter!
The U.S. Centers for Disease Control and Prevention (CDC) has published interim guidance for evaluating and caring for patients with post-COVID conditions.* The CDC will present this guidance to clinicians on a public COCA Call on Thursday, June 17th from 2:00 PM – 3:00 PM ET. This guidance deserves a detailed review of what has
#MEAction has sent a letter to the Congressional House Subcommittee on Health (Energy & Commerce Committee), following their recent congressional hearing on Long COVID. Our letter urges Congress to hold the National Institutes of Health (NIH) accountable for expediting treatments to people with ME/CFS and Long COVID. To make this happen, we urge Congress to
We are thrilled to see the press tell our story of the #MillionsMissing this year, and the #MillionsMore “long haulers” expected to develop ME/CFS following a COVID-19 infection. In Pittsburgh, a mother of four told her story in the Tribune-Review about her 25-year journey of never recovering after contracting EBV, the virus that causes Mono.
In light of this new evidence of exacerbation of ME from Covid-19, #MEAction UK have again written to Matt Hancock and Professor Stephen Powis to make them aware of the risk to people with ME in not being able to access the Covid-19 vaccine as a priority.
Read the first findings from the survey #MEAction UK and #MEAction Scotland are conducting with Action for ME to gather evidence of the impact of Covid-19 on people with ME. Preliminary Report The aim of the survey is to provide data that can be used, along with personal stories, to help our campaign to make
Outreach to BIPOC communities has always been a challenge in ME/CFS. In a disease where diagnosis is so hard to come by, who gets a diagnosis is not a matter of prevalence but a matter of privilege. While community-based studies show just as many Black people get ME as white people, if not more, white
We are gearing up for #MillionsMissing 2021! This year will be a week long event, from May 9 to 15, of action and activities to strengthen our community, and fight for recognition, research and medical education for myalgic encephalomyelitis (ME). Check out our website for the #MillionsMissing timeline of events, grab your t-shirt, and plan a local event! We