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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.
Carol Head of SMCI to step down
After five years of advocacy leadership, Carol Head, the President of Solve ME/CFS (SMCI), will be stepping down from
Fighting for Rigorous Science and Accurate Reporting
On March 13, Reuters published an article, “Special Report: Online activists are silencing us, scientists say“. Reuters used their
Denmark: MPs will Vote whether to Recognise ME as WHO-defined disease!
This past Tuesday, March 12, Danish Health MPs unanimously agreed on a declaration that will recognise myalgic encephalomyelitis (ME)
Enrolling: NIH Intramural Study
Overview The objective of this research study is to look in-depth at the clinical and biological characteristics of ME/CFS.
Australia: School Study on Teenagers with Chronic Fatigue Syndrome
A recent study of Australian teenagers with chronic fatigue syndrome found CFS impacted their development of academic, cognitive and
Meet the Scientists: Australia’s Prof. Don Staines
‘Meet the Scientists’ is a series of interviews with researchers working on ME and chronic fatigue syndrome. We ask them
Denmark Parliament Holds Query on ME
#MEAction supports people with ME in Denmark today as the Danish Parliament discusses the treatment of people with myalgic
Plan for #MillionsMissing Now! Read the Toolkit!
#MillionsMissing 2019 is fast approaching, and now is the time to get started! Demonstrations calling for health equality for
Here’s What to Expect for ME Advocacy Day 2019
Last day to register to attend Advocacy Day in Washington, DC on April 2-3rd! If you are wondering if
Amazing [email protected] fundraiser in the UK!
On 3rd, February 2019, [email protected] held a supper quiz in North London to raise awareness for myalgic encephalomyelitis (ME).
Advocate for ME on the Hill! Only One Week left to Register!
You still have one week left to register for Advocacy Day 2019 in Washington, DC! You may be trying to decide
Announcing #MillionsMissing 2019! Join us!
Listen to the article: We are thrilled to announce #MillionsMissing 2019! This May, we will take to the
Get involved: support science and advocacy this April
April is going to be an incredibly exciting month for advocacy and for research into ME! The NIH is
Enrolling: Harvard brain scan PEM study — local only
Who: Michael VanElzakker, PhD, Massachusetts General Hospital/ Harvard Medical School is looking for participants living in, or near the
Amy Carlson – an Ally to the ME Community
Listen to the article: Allies are critical to the success of any movement and even more so in
Enrolling: Take an online survey to give feedback on a new app for ME
Listen to the article: Who: Doctors from Columbia Medical center are interested in creating a mobile app called
A loss to the ME community: Jonas Blomberg
You can listen to this article read aloud by visiting #MEAction’s Soundcloud here. It is with a heavy heart
HOMELESS: How AMMES is Keeping People with ME in their Homes
Listen to the article: Erica Verrillo is President of the American ME and CFS Society (AMMES) | Photo
Proud Accessible Activism: The ME Debate Virtual Demonstration
Throughout history, activism and campaigning have been a driving force for positive change across the world. From civil rights
HUGE Event for ME in Boston
Follow Rivka Solomon on Twitter: @RivkaTweets “Now that’s the kind of event that gives hope. Real hope. Tangible, actionable
Extended deadline – Attend the NIH Conference with a Scholarship from #MEAction!
#MEAction is currently accepting applications from medical students and practicing medical professionals to attend the National Institutes of Health meeting
Scottish Parliament Committee Hears Petition on ME
Listen to the article: On 24th January, the Scottish Parliament Public Petitions Committee heard evidence on three continuing petitions,
Historic Parliamentary Debate Shaped by People with ME
Listen to the article: On Thursday 24th January 2019 a historic debate took place. Over 40 MPs from
The Effects of Graded Exercise Therapy and Positive Thinking on a Young Girl with ME
Listen to the article: Exercise protocols prescribed for myalgic encephalomyelitis (ME) were powerful enough for Cherry to ignore the
Register Now for ME/CFS Advocacy Week 2019!
Listen to the article: #MEAction and Solve ME/CFS Initiative (SMCI) are excited to announce a joint partnership for
Join the virtual demonstration in support of the ME debate!
Listen to this article on #MEAction’s Soundcloud here On Thursday afternoon, 24th January, MPs from all parties will be
What can you do before this Thursday’s ME debate?
Listen to this article on #MEAction’s Soundcloud here This Thursday 24th January, myalgic encephalomyelitis (ME) will be discussed in
UK Parliament will debate ME in historic House of Commons debate
UK PARLIAMENT WILL DEBATE ME IN HISTORIC HOUSE OF COMMONS DEBATE FOR IMMEDIATE RELEASE Parliament has announced that it
Stuart Murdoch’s open letter ahead of the ME Debate
Stuart Murdoch is the lead singer of Belle and Sebastian. He has had ME for 28 years and he
Take Action Now! The UK debate on ME has been granted
Listen to this article on #MEAction’s Soundcloud here We are delighted that Carol Monaghan MP has managed to secure
Neuroinflammation review by #MEAction research fellows
Though science may speed along a bit fast to ‘catch’ on audio, you can also listen to me read
How to Represent ME at the Women’s March
#MEAction Colorado is organizing a small cohort to join the Women’s March in Denver this Saturday, Jan. 19th. (See
Are You a Young Person Affected by ME? How do you Visualize Health Equity? Join a National Contest
The U.S. National Academy of Medicine (NAM) is holding a contest for young people (ages 5 to 26) to
Tell NICE your experience of CBT/GET. Take the survey now!
The National Institute of Health and Care Excellence (NICE) is rewriting the UK ME guidelines. As part of this
Comment on Australia’s National Draft Report on ME/CFS – Open to Global Feedback
Australia’s NHMRC has released the ME/CFS Advisory Committee’s draft report for public consultation. The public consultation process will remain open until Monday February 18, 2019.
How Does ME Research Fare? Check Out these Piecharts.
Research scientist, Dr Mark Guthridge, PhD, from Melbourne Australia created this piechart to show that of these 13 diseases,
Enrolling: NIH Focus Group on PEM
Overview The NIH is currently looking for volunteers with ME/CFS to participate in a focus group that will be
Apply for Stanford Medicine X Conference as ePatient or Presenter – deadline Jan. 31st
Stanford University hosts an annual academic conference, Medicine X, every September to bring together community stakeholders, innovators and leaders
Study Shows that Red Blood Cells are Stiffer in People with ME
Listen to the article: Researchers have published a paper that shows various measures of deformability in the
2018 ME/CFS Research Summary
Commissioned and originally published by the Solve ME/CFS Initiative. Be sure to check out their interactive guide here. Follow
A Year in Review: Celebrating the 2018 Achievements of Our Community
2018 has been a big year at #MEAction! Thank you to all of you who have put forth immense
#MEAction Responds to NIH
As many of you know, #MEAction activists for myalgic encephalomyelitis (ME) met with the director of the National Institutes