Two years ago, #MEAction embarked on an ambitious project, the Chronic Illness Survey Adventure! The Adventure is a survey to deeply examine the symptoms experienced by people with diseases that are triggered or unmasked by infection, including ME, POTS, hEDS, MCAS, and Long COVID.  At the end of this year, we will close the Adventure with over 1.5 million data points illustrating the connections between these diseases’ symptom presentation, and what makes each disease– and e

Alison Sbrana will be co-presenting our introduction to Canary Corps. on Wednesday. This is her story.

Have you registered yet to join us this Wednesday, December 6th at 4pm ET / 1pm PT for a community presentation introducing the Canary Corps program?Ahead of Wednesday’s event we wanted to share with you Alison’s story. Alison Sbrana will be co-presenting this event, and much of the design of Canary Corps has been shaped by both her professional and lived experience. Her story is a sneak peek of what’s gone into the making of Canary Corps.The purpose of Wednesday’s event is t

A year ago, we were proud to announce that #MEAction and Mayo Clinic Rochester had won a grant for diagnostic improvement, with Ravindra Ganesh, and Stephanie Grach, and I on the grant as co-investigators. Our project, Improving Diagnostic Accuracy of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Through Implementation of an Enhanced Education Protocol and Care Process Model has so far produced: • Updates to the Mayo Clinic public-facing page on ME/CFS • A new diagnostic

During this time of thankfulness and gratitude, #MEAction staff wants to share what BOLD ACTIONS we are thankful our volunteers and community have taken throughout the year. We thought we could reflect together on all that we have accomplished this year and how every single one of us is important in this powerful community. A community who never ceases to amaze us with BOLDNESS, STRENGTH, COMPASSION, and VULNERABILITY!#MEAction is able to do what we do, because of you! You ar

Great news! About six months ago, we began a project to update, expand, and revamp MEpedia. Due to a generous grant, we were able to create a project scope, hire respected experts in accessibility and MediaWiki development, and make several important changes to MEpedia!MEpedia is a Vital ResourceMEpedia is one of the most utilized resources for researchers, clinicians, and people living with ME/CFS, with over 36 million page views.  However, the software running MEpedia, Medi

I’ve got exciting news to share!In early 2024, #MEAction will launch a new grassroots, peer-run program in the United States to help people with ME, Long COVID, and other infection-associated chronic illnesses find and access local services and support for people with disabilities.This will be an innovative and radical program that is run by, and built for, our sick and disabled community. We call it: Canary Corps.Our community knows well what it’s like to be the “canaries in

#MEAction is thrilled to announce a new travel scholarship for providers and medical students to the National Institutes of Health’s (NIH) Conference, Advancing ME/CFS Research: Identifying Targets for Intervention and Learning from Long COVID, this coming December 12- 13, 2023 in Bethesda, MD.  #MEAction is providing this opportunity for one to two promising medical students (MD, DO, NP,  or PA)  and one to two practicing medical providers (MD, DO, NP, or PA). All scholarshi

#MEAction is excited to announce we are partnering with the Writers Guild Initiative (WGI) to offer creative writing workshops for people with ME and Long COVID**. WGI has graciously donated their time to offer these writer workshops through personal mentorship with the writers of the #MEAction community! The workshops consist of three sessions during the weekends in November. The WGI’s mission is to make the art of storytelling accessible to people of all ethnic, cultural, a

The National Institutes of Health (NIH) announced they will designate people with disabilities as a population with health disparities. This is a win that could have a large impact on people with ME and the millions of people with disabilities across the country. "This designation recognizes the importance and need for research advances to improve our understanding of the complexities leading to disparate health outcomes and multilevel interventions,” said Dr. Pérez-Stable. “

#MEAction is thrilled to share the incredible work our State Chapters have been up to over the past couple of months! They continue to amaze us daily with their dedication and hard work to bring awareness to the ME community. Read more about their success stories:California: • The University of California has added some disclaimers about the harm of exercise therapy in its Long COVID modules; however, further corrections are still in order. • We have continued successful mont

As a charity we were pleased to be able to submit a longer response than is possible using the online survey. Below is the text as submitted to the DHSC. (PDF version available here)This response is submitted by #MEAction Scotland, the Scottish arm of #MEAction UK, a not for profit organisation. Our response is based on the two areas identified in the Foreword of the Interim Delivery Plan (IDP) where it states that the “Scottish Government is keen to understand the views of s

As a charity we were pleased to be able to submit a longer response than is possible using the online survey. Below is the text as submitted to the DHSC. (PDF Version available here)IntroductionThis response is submitted on behalf of #MEAction UK, a not for profit organisation operating in all regions of the UK. We thank the DHSC staff past and present who supported the Delivery Plan and the volunteers on the working groups who put so much effort into this report. We give mor

We are writing this article to share some exciting news!On Tuesday, September 26, ME advocates delivered copies of the book, The Puzzle Solver, by Tracie White with Ronald W. Davis, PhD, along with information about ME and Long Covid to Senators on the Hill. The books were donated by an individual living with severe ME/CFS in an effort to raise awareness and delivered by health allies. Advocates will return next session to deliver books to the remaining Senate offices.Myalgic

RSVP TODAY: We are hosting a preview party for the new, virtual Home of the #MillionsMissing this Sunday, September 24th, at 12 pm PT/ 3 pm ET/ 8 pm BST!We have always had to be creative in telling Our Story - the story of M.E. - to the world since so many of us cannot protest in the streets. How do we shine a light into our darkened rooms and demand the world’s attention? We started with shoes. Send in your shoes with a tag to tell your story. We will show the world that you

MEAction UK have been in communication with the BMJ and are delighted to announce that the Journal of Neurology, Neurosurgery & Psychiatry (JNNP) are publishing an edited version of our rapid response to  ‘Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis’. We have taken out some of the more direct language but left the sense and the sentiment intact. We agreed to a few selected

#MEAction and Long COVID Justice issued a press statement yesterday about our communities’ deep concerns regarding the rollout of RECOVER’s clinical trials for Long COVID. As studies show half of the Long COVID community meets the diagnostic criteria for ME/CFS - and our core symptoms overlap - RECOVER’s research has major implications for our community. In the press release, we wrote about the great need to trial pharmacological drugs that have already shown promise in the M

#MEAction UK has now received a reply to our complaint about the removal of our rapid response from the Journal of Neurology, Neurosurgery & Psychiatry (JNNP). ‘Thank you for your email. I can confirm that your complaint has been received and is currently under review by the Content Integrity team at BMJ. We will endeavour to respond to you in full as soon as possible.’ In order to understand who/what might have been behind the re-evaluation and removal of our rapid response

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 A

WHO: Dr. Benjamin Natelson at the Mount Sinai Hospital (New York)WHAT: The Pain and Fatigue Study Center at Mount Sinai is looking to examine why post activity fatigue (Post-exertional malaise) occurs in patients with ME/CFS and at what level. We are looking for patients that are between the ages of 25-60 and BMI of 30 and below.In order to confirm your eligibility, we will complete a brief phone intake.WHEN: The study will run for two years or until we reach our target numbe