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Just In Time for the School Year: A New Pediatric Pacing Guide
#MEAction is excited to share a new and much-needed resource just in time for back to school! We are
![A laptop on a desk displaying the PDF of the NICE guideline for diagnosis and management of ME. There is a cup to the left and a pair of glasses and some folder to the right. White text in a red box reads ‘Update on Scottish implementation of the NICE Guideline’ and the ME Action Scotland logo is in the top left.](https://www.meaction.net/wp-content/uploads/2022/07/NICE-implementation-Scotland_with-title-300x157.jpg)
An update on the Scottish implementation of the NICE guideline
As we announced in February, the Scottish Government has committed to implementing the new NICE guideline for diagnosis and
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Dept. of Labor hosts dialogue on Long COVID in the workplace
The U.S. Department of Labor (DOL) has opened a national online dialogue on “Understanding and Addressing the Workplace Challenges
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#DisabilityPrideMonth: Listen to The Century Foundation’s podcast Off-Kilter
As part of #DisabilityPrideMonth, The Century Foundation’s podcast Off-Kilter has been hosting a series of conversations featuring Disability Economic
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New #MEAction Volunteer Survey
#MEAction is excited to announce our new Volunteer Survey! We invite everyone to complete the survey. The survey link
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#MEAction Recognizes & Celebrates Pride Month 2022!
#MEAction recognizes and celebrates Pride Month! As a community that welcomes and encompasses all, this Pride Month, we asked
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Top 10 ME/CFS Recommendations for the Long COVID National Research Action Plan
#MEAction has been hard at work continuing to advocate to the Department of Health and Human Services (HHS) on
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Severe ME Artists Project 2022!
#MEAction is once again excited to announce our Severe ME Artists Project 2022 that will feature work from those
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NEW YORK ACTION ALERT: NEED NY GOVERNOR KATHY HOCHUL TO SIGN ME/CFS BILL INTO LAW!
Dear New York Community- We need urgent action now to persuade New York Governor Kathy Hochul to sign our
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Facets of ME: Temperature Dysregulation
Welcome to June’s #FacetsOfME! Facets of ME is an educational feature where we dive into a particular aspect (or
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Dept. of Labor Updates Information on ME/CFS for Workers, Employers
The U.S. Department of Labor’s Office of Disability Employment Policy (ODEP) has updated the information on ME/CFS provided at
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#MillionsMissing: 7 Days in Self Portraits with ME/CFS
After taking #MEAction’s photography workshop with photographer Lucia Doynel for #MillionsMissing, Terra Dumont produced these stunning photos as a
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U.S. Healthcare Coding Revisions Enable Tracking of ME/CFS Cases
Since 2015, the 1-2.5 million Americans with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) have been effectively nonexistent, at least as
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We can’t believe it! Another $50k matching gift!
I am so thrilled to tell you that we have another $50,000 (£39,873.50) matching gift for #MEAction’s #MillionsMissing fundraiser.
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Email Doctor Unger about the Misinformation at CDC
People with ME deserve accurate & clear ME/CFS education from the Centers for Disease Control, not recycling of discredited
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#MillionsMissing: Videos Created by our Amazing Community
This year’s #MillionsMissing, our community created some amazing videos that we are privileged to highlight. This is just a
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#MillionsMissing MAY 2022 Wrap Up
Thank you for sharing your stories, for illustrating our common thread so that our governments, healthcare systems, and other
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New T-Cell Research at the University of Massachusetts
#MEAction’s Director of Scientific and Medical Outreach, Jaime Seltzer, sat down with Dr. Liisa Selin, MD, PhD, and Dr.
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Exciting news about Mayo Clinic!
We’ve got some very exciting news this week! Clinicians working at the Long COVID clinic at Mayo Clinic’s campus
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New Volunteer Leadership Program Led by Experts!
We are thrilled to announce that Chimére Smith and Terri Wilder will be joining #MEAction as consultants to execute
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Research Update: The NIH Intramural ME/CFS Study
National Institutes of Health researchers who began what may be the deepest biological investigation ever of myalgic encephalomyelitis/chronic fatigue
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#MEAction Meets with the Department of Labor
#MEAction continues our advocacy for the #MillionsMissing in a recent meeting with the Office of Disability Employment Policy (ODEP)
![Word: #MEAction Scotland: First Community Call with an image of a laptop showing a video call with 10 people of different ages, races and genders. In the background to the right of the laptop is a green plant and in the foreground in soft focus is a white hand holding a blue mug.](https://www.meaction.net/wp-content/uploads/2022/05/Scotland-Community-Call-Featured-Image-300x157.png)
#MEAction Scotland holds its first community call
Last week, #MEAction Scotland volunteers held the first in a series of community calls. The online meetings will take
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Call-to-action for California: Centers of Excellence
We have a golden opportunity to secure substantial funds to address the clinical care crisis in ME/CFS and Long
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Elevating stories of the #MillionsMissing to HHS leadership
#MEAction is advancing ME/CFS advocacy efforts through our ongoing engagement with U.S. federal agencies, including at the Department of
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#MEAction Presents: Not Going Quietly Screening & Panel
We have a very exciting opportunity to come together and watch the award-winning documentary Not Going Quietly. We also
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ME/CFS on TV (Part 3)
RETURN TO PART 1 OF THIS SERIES HERE ME/CFS ON THE ITALIAN TV SCREEN: A VIRTUOUS MODEL by Giada
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The Virtual Choir is Back — Submissions now Open!
We are excited to announce that submissions are now open to join our next virtual choir! We have so
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Facets of ME: Cognitive Dysfunction
Welcome to our second Facets of ME! This is an educational feature in which we choose one aspect of
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ME/CFS On TV (Part 2)
RETURN TO PART 1 OF THIS SERIES HERE “THAT’S WHY THEY DON’T BELIEVE YOU, YOU DON’T LOOK SICK!”: FICTIONAL
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You can Still Help Madeline!
“Madeline” is a woman who has been suffering with a post viral syndrome for 40 years which includes Severe
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Black History Month
In honor of Black History Month, #MEAction has gathered a collection of articles, videos, and groups that features Black
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#MEAction Continues to Get Press for ME
#MEAction continues to prioritize getting ME in the press. We are very thankful to be featured in USA Today,
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NIH Comes up Short Once Again
No Increase in Funding in Latest Plan for ME/CFS Collaborative Research Centers The National Institutes of Health (NIH) has
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An Update from #MEAction
#MEAction has been a leader in the fight for health equity for people with Myalgic Encephalomyelitis for the past
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#MillionsMissing 2022 Will be in Two Parts
This year, we are excited to announce that #MillionsMissing will be held in two parts: May and September! #MillionsMissing
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NICE guideline to be implemented in Scotland
NICE news for Scotland! Throughout the development of the NICE guideline for ME/CFS, #MEAction Scotland has been in regular
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Be part of designing UWS research into ME and long COVID
UPDATE: The research team have let us know that they’ve received a huge response to this request and they
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Facets of ME
We are excited to launch an all-new educational feature – Facets of ME! We will be diving into the
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#MEAction Featured in Infection Control Today Whose Audience is Researchers & Medical Practitioners
As you know, Adriane Tillman, has been working extremely hard, alongside her team of volunteers to get featured in
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ME/CFS on TV (Part 1)
ME/CFS IN EARLY TV DISCOURSE: QUESTIONING GOVERNMENTAL POLICIES AND CHALLENGING THE CONCEPTIONS OF DISEASE AND MEDICINE by Giada Da
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Mourning the loss of Dr. Ron Tompkins
Today #MEAction joins the community in mourning the loss of Dr. Ronald G. Tompkins, MD, ScD, who passed away
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NIH Long COVID research lacks clear plan to identify and track ME/CFS
MEAction has written to the National Institutes of Health (NIH) expressing our deep concern that the RECOVER Initiative research
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The Last Two Years Changed the World…
What a year 2021 was! People with ME have always faced formidable challenges: every day combatting stigma, lack of understanding
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CDC decides not to publish flawed ME/CFS treatments review!
As we enter the holidays we have a positive development to report coming out of yesterday’s ME/CFS stakeholder call
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Apply to join the UK’s ME/CFS priority setting workshops
Over 2,000 people with ME/CFS, carers and health professionals in the UK engaged with the recent survey from the ME/CFS Priority Setting Partnership.
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#MEAction Arrives in the Medieval Town of Med-Ed
Here’s a hearty hello from the Medieval Town of Medical Education! Lords and Ladies, We did it!… we got
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NICE Committee Member Community Call Review
Two NICE ME/CFS guideline committee members joined #MEAction for a community call, to provide their insight into the guideline
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NICE Retweeted #MEAction UK’s Dear Doctor Campaign!
On November 12th, just a few days after our launch of the Dear Doctor Campaign, @NICEGetInvolved retweeted our campaign
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CDC must act now to stop flawed review of ME/CFS treatments
In advance of next week’s CDC ME/CFS Stakeholder Engagement and Communication (SEC) call, #MEAction has sent a letter to
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Last chance to vote for your top ten ME/CFS research priorities in the UK
Over 1,700 people have now voted for their top ten ME/CFS research priorities in the UK. With the deadline
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New Black British support group seeks members with ME and Long Covid
Darren Randon, co-founder of Well Versed Ink, is seeking new members for an online group for UK-based Black and