“Madeline” is a woman who has been suffering with a post viral syndrome for 40 years which includes Severe Myalgic Encephalomyelitis (ME) and fibromyalgia. Madeline lives in British Columbia, Canada and she urgently needs your help. There is a need to seek alternative medical treatments due to the lack of coverage for treatments within the
#MEAction continues to prioritize getting ME in the press. We are very thankful to be featured in USA Today, North Jersey, New York Times, Infection Control Today, Times-Herald and Well+Good, all in the last few weeks! Our press reach continues to focus on multiple audiences, including scientists and medical practitioners, the disability and chronic illness
No Increase in Funding in Latest Plan for ME/CFS Collaborative Research Centers The National Institutes of Health (NIH) has announced their intent to extend the ME/CFS Collaborative Research Center (CRC) program, first launched in 2017, beyond its initial 5-year lifetime. They have issued a $7.1M annual funding opportunity for the ME/CFS CRCs, and another $500K
#MEAction has been a leader in the fight for health equity for people with Myalgic Encephalomyelitis for the past six years, as led by our visionary co-founder and first executive director, Jen Brea, and then by our current executive director, Julia Miele, over the past year. Julia has helped our growing organization streamline our processes,
This year, we are excited to announce that #MillionsMissing will be held in two parts: May and September! #MillionsMissing is about demonstrating our community’s collective refusal to let the stories of people with ME be erased, or access to healthcare and medical research blocked. We protest against all barriers to justice for the growing community
NICE news for Scotland! Throughout the development of the NICE guideline for ME/CFS, #MEAction Scotland has been in regular contact with the Scottish Government about the change needed in Scotland. Now that the guideline has been published, the government has got in touch to involve us in a development. What is the plan?The government plans
We are excited to launch an all-new educational feature – Facets of ME! We will be diving into the multiple facets of ME/CFS including symptoms, comorbidities, practical tips, and more. Our goal is to take the first Friday of each month and delve into one particular facet of ME in a way that is easy
As you know, Adriane Tillman, has been working extremely hard, alongside her team of volunteers to get featured in the press and she has tapped into a new audience with her latest press hit in Infection Control Today’s article, “Long COVID Shouldn’t Have Taken Us by Surprise”, by Frank Diamond. This new audience includes researchers
MEAction has written to the National Institutes of Health (NIH) expressing our deep concern that the RECOVER Initiative research agenda lacks a clear plan for how to accurately identify or consistently track the onset of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) cases among patients with Long COVID. This is of particular importance because a sizable fraction
What a year 2021 was! People with ME have always faced formidable challenges: every day combatting stigma, lack of understanding from clinicians, NIH’s and CDC’s low budgetary commitments, and a world of challenges navigating disability on top of symptoms. It’s no exaggeration to say that 2020 and 2021 changed the world – and the world of chronic,
