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As I Age with ME
By Marianne Granger In my forties I was moving forward fulfilling my drive to be a community organizer/communicator/coach (my
Erin Roediger: Igniting a Fire for ME
As the U.S. Advocacy Manager for #MEAction, I have the great pleasure of connecting fully to my life’s purpose:
Action Alert: Support A Funding Increase for ME!
We need YOU to contact your Senators. Your voice makes all the difference. Our champion, Senator Markey, led two
We need Effective, Strategic, and Respectful Engagement from CDC
On June 3rd the CDC held its latest MECFS Stakeholder Engagement and Communication (SEC) Webinar/Conference Call with the ME
Why #MEAction is Taking Action towards the CDC on Two Fronts
#MEAction has announced two CDC-related advocacy actions today and yesterday. We are asking you to contact your Senators to
Meet the #MEAction Staff: Espe Moreno
I am delighted to be part of the series in which you are getting to know the #MEAction staff!
Meet the Staff: Holly Latham
It is an honor to volunteer and work for #MEAction. #MEAction came to me at a time in my
Hundreds gather for #MillionsMissing Glasgow
#MillionsMissing Glasgow on 12 May, 2019, was a huge success, and took place in glorious sunshine which is fairly
Thank The Senate Resolution Co-Sponsors!
Thank The Senate Resolution Co-Sponsors! This past weekend we celebrated the passing of the bipartisan Senate Resolution, S.Res. 225,
ME Friendly Forms of Escapism, and How Best to Undertake Them
Jack Croxall is an author, scriptwriter and blogger living in Nottinghamshire, UK. He fights ME both in life and
Meet the #MEAction Staff: Laurie Jones
Meet the #MEAction Staff! Over the next couple of weeks, the staff at #MEAction will be sharing their experiences
Historic Congressional Resolution Passes for ME!
Senate Resolution passed! This is a great victory for all people with ME.
Enrolling: EDS Genetics Study
What: The Ehlers-Danlos Syndrome (EDS) Society is recruiting individuals to participate in a genetic evaluation study. ME/CFS and EDS have
A Letter from Jennifer Brea about her ME Remission
Listen to the article: #MEAction co-founder, Jennifer Brea, wrote this letter to the community about her remission of
Read #MEAction’s Request for Information response to the NIH
The story so far NINDS, the National Institute for Neurological Disorder and Stroke at the NIH has solicited an RFI,
We are building a movement at #MEAction UK. Join us!
#MillionsMissing – organised by #MEAction – has been such a successful campaign this year, and we thank everyone in
We did it! This is what the #MillionsMissing Look Like.
It has been a big week, with over 100 public and virtual events happening across the world! We are
Enrolling: Stony Brook University ANS Study
Who: Researchers at Stony Brook University– funded by the National Institue of Health What: The goal of this study is
#MillionsMissing from ME: 2019 Stories
We asked you, the #MillionsMissing from ME to tell us your stories. We are grateful for all that you’ve
Remembering the Forgotten: How AMMES Lessens Isolation and Neglect
Erica Verrillo is the president of the American ME and CFS Society, a 501(c)(3) nonprofit. May is the month
Help Simmaron Research AMPlify Therapies for ME!!
Simmaron Research is conducting a one-of-a-kind study to analyze data from ME/CFS patients who respond to treatments like Ampligen®, IVIG, and cidofovir, and we need your help funding this data analysis! Our goal is to publish peer-reviewed data to stimulate treatment trials and inform rigorous trial design ASAP!
Twitch Gaming Show Fundraises for #MEAction!
Rat Queens, a show on the popular Twitch channel, HyperRPG, is hosting a fundraiser for #MEAction this Wednesday, May 8th
South Carolina Raises Awareness about ME
My name is Robert Jacobs, MD and I am a retired Physician and caregiver for my wife who has
Urgent – Contact Your Senators Now to Co-sponsor the ME/CFS Awareness Day Resolution
***UPDATE: THIS ACTION IS NOW OVER*** Please contact your SENATORS and urge them to co-sponsor a ME/CFS Awareness
#MillionsMissing from ME: Your Stories
Myalgic encephalomyelitis (ME) is a debilitating, chronic disease that steals so much from the person. We received heart felt
Career and Loss for People with ME
Australia: Sign the Petition to Provide Disability Services to People with ME!
Australians with ME/CFS are routinely rejected from the country’s National Disability Insurance Scheme (NDIS), because the Australian government doesn’t consider ME/CFS to be a permanent condition for most living with the illness. Sign this petition to support Aussies with ME/CFS and demand policy change!
The Unique Challenge of Aging with M.E.
Aging can be a challenging time for anyone but people with the debilitating, chronic disease of myalgic encephalomyelitis (ME) often
Parents and Children Missing from their Lives due to M.E.
Myalgic encephalomyelitis (ME) is a debilitating, chronic disease that steals so much from the person. Parents with ME are
South Carolina Raises Awareness About ME
May has been declared Myalgic Encephalomyelitis (ME) Awareness Month and May 12, 2019 as ME Awareness Day pursuant to a City of Charleston, South Carolina Proclamation
#MEAction Drafts Response to NIH’s Request for Information
NINDS, the National Institute for Neurological Disorder and Stroke at the NIH has solicited an RFI, or a Request
Q&A with #MillionsMissing UK Organisers
On Thursday 18th April, #MEAction UK held a conference call with organisers of #MillionsMissing event past and present from
How to Protest Virtually with the #MillionsMissing
Join the protest virtually during #MillionsMissing – May 5th to May 12th Use the hashtag: #MillionsMissing Start sharing photos
$1M Biobank Project for Australia
A charitable trust, the Mason Foundation, is asking researchers to submit proposals for a biobank and patient registry as
Unseen: Black People Living With ME
By Wilhelmina Jenkins When I became ill in 1983 with what is now called ME/CFS, my life as I
Missing No More: Improving the Lives of People with ME and CFS
Senator Jordon Steele-John has announced the Australian Greens’ policy on Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS), planning to
Meet The Scientist: Professor Anthony Komaroff
Anthony Komaroff, MD, is the distinguished Simcox-Clifford-Higby Professor of Medicine at Harvard Medical School and Senior Physician at Brigham and Women’s Hospital in Boston. He
Toxic Masculinity Made my ME Much More Punishing
I came to on the floor of a supermarket in an affluent London borough. I was staring up at
Celebrating Our Wins for ME!
It has been been an exciting time for the myalgic encephalomyelitis (ME) community these past few weeks. We are in
#MEAction Medical Travel Scholarship Award Winners
#MEAction Medical Travel Scholarship Because of the generous donation from a private family foundation, #MEAction has been able
What A Day…
What A Day… ME Advocacy Day 2019 was a huge success! #MEAction and Solve ME/CFS Initiative were very excited
CBT and GET survey results published by Forward-ME Group
In January 2019, a survey investigating the impact of graded exercise therapy (GET) and cognitive behavioural therapy (CBT) for
GET and CBT are not safe for ME – summary of survey results
Listen to the recording: #MEAction UK Lay Summary of the 2019 Forward ME Group CBT & GET Survey Topline
Advocacy Week Local Actions
***UPDATE: THIS ACTION IS NOW OVER*** ADVOCACY WEEK LOCAL ACTIONS As many of you know, Advocacy day is
Ask Your Senators to Increase Funding for ME Research and Education
***UPDATE: THIS ACTION IS NOW OVER*** Senator Markey is currently asking for support from his fellow Senators for TWO
#MillionsMissing: Tell Your Story to the World
One of our goals for #MillionsMissing is to tell our story of myalgic encephalomyelitis (ME) to the world. Since 2016,
Food, Clothing and Shelter: Delivering the Basics to People with ME
Erica Verrillo is President of the American ME and CFS Society (AMMES) When I was a child, my mother
Represent #MEAction at the NIH Conference
The National Institutes of Health conference on myalgic encephalomyelitis (ME) research is fast approaching on April 4th-5th in Bethesda,
Australian Government Announces $3M for ME/CFS Research
Australia’s Health Minister Greg Hunt has today announced $3M for research into ME/CFS. Minister Hunt notes that “funding will be provided through the National Health and Medical Research Council (NHMRC) to help researchers develop a better understanding of the cause and condition of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Diagnosis of ME/CFS is difficult, with no diagnostic test and a diverse range of symptoms. Research will drive a better understanding of the condition along with its causes and the mechanisms that lead to its debilitating symptoms.”
A response to Dr. Mark Porter’s article about ME in The Times
Last week, Dr. Mark Porter wrote an article in The Times under the headline, “Treatment for chronic fatigue syndrome
Meta-Analysis Shows Blunted Heart Rate Contributes to Activity Intolerance in People with ME
The Workwell Foundation issued the press release below about its meta-analysis of 20 years of studies that shows “overwhelming evidence” of chronotropic
Our Community will Not Suffer Stigma and Distortion
Last week was a difficult time for the ME community as we watched a few journalists deride and dismiss
Increased Funding for ME Research and Education
***UPDATE: THIS ACTION IS NOW OVER*** Congressmembers Zoe Lofgren and Anna Eshoo, are currently asking for support from their
A Glorious Moment for the Dutch Government to Step Up to the Plate
Today, exactly a year ago, a report by the Dutch Health council expressed the urgent message that immediate intervention is required regarding ME. And last December the current Minister of Medical Care, Bruno Bruins, stated that he would be following up on all accounts. As someone dealing with ME, I am eagerly awaiting the rest of this project, hoping to live a less restricted life.