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Research: supporting advocacy orgs yields huge payoffs
This Giving Tuesday, I’ve got some good science to show why you should donate to #MEAction and other advocacy
A Poet Contextualizes Our Struggle
Poet and artist, Christiana Baltais, writes about moving the mountains of stigma that harm people with myalgic encephalomyelitis (ME)
Community Roundup – Telling Our Story to the World
Across the globe, we are pursuing creative projects across all mediums to tell the world about myalgic encephalomyelitis (ME).
Volunteer of the Month – the Woman Behind the Per Fink Protest
We are thrilled to honor Terri Wilder as our fall Volunteer of the Month. Terri spearheaded the protest and
Suomalaisen Äidin Kertomus
Suomalaiset ME/CFS-potilaat tarvitsevat apuasi. Allekirjoitathan vetoomuksen! [maxbutton id=”21″ url=”https://my.meaction.net/petitions/me-cfs-is-not-a-functional-disorder-we-call-for-appropriate-treatment” text=”Allekirjoita vetoomus!” ] Editorilta: Klikkaa tätä lukeaksesi englanninkielinen versio artikkelista.
Advocacy Round-up – A Season of Protest and Petition
The #MEAction community has dug in deep this fall to undertake the incredibly important work – and heavy lifting
The Story of a Finnish Mother
People with ME/CFS in Finland need your help. Please sign their petition! [maxbutton id=”21″ url=”https://my.meaction.net/petitions/me-cfs-is-not-a-functional-disorder-we-call-for-appropriate-treatment” text=”Sign the petition” ]
Donate on #GivingTuesday
Donating on #GivingTuesday helps #MEAction get ready for the new year, with all there is to come! We have
Sept & Oct — Research Roundup
The end of September was a whirlwind! Between the CDC’s website work, the CDC’s awarding of a sole contract,
Scotland: Review Treatment of People with ME Petition
On Thursday, 8th November, the Scottish Parliament Public Petitions Committee met to review evidence submitted in support of various
Ten Organizations Ask Congress to Create Legislation for ME/CFS
On Friday, November 2nd, #MEAction, the Solve ME/CFS Initiative, and eight other ME/CFS organizations sent a letter to our
Alphabet Soup: Read the Latest about our U.S. Health Agencies and M.E.
There are a lot of moving pieces to keep track of as we push for our U.S. federal agencies
Enrolling: Online Pediatric Research Survey
As there is currently limited research on pediatric ME/CFS, the purpose of the study is to improve our understanding
Stop the FDA from Banning Compounded Medications that Help People with ME – Take Action!
For the past 35 years the FDA has neglected to bring meaningful treatments to market for people with Myalgic
NICE Appoints Committee Rife with Bias – Take Action!
What’s been happening at NICE? The National Institute of Clinical Excellence (NICE) is re-writing its guidelines on ME/CFS. Health
UK: MPs fight for a crucial parliamentary debate on ME
Carol Monaghan MP presented her application for a debate on ME to the Backbench Business Committee on Tuesday October
Honoring Our Elite Seniors: 70+
We are a group of people over the age of 55 with ME. In August, Bob Gawron wrote our
Australia: National TV Program Debates ME/CFS, Raises Ire of Community
Australia: An hour-long, nationally televised discussion panel on myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) on Oct. 16 has
UPDATE: Cochrane Has NOT Removed "Exercise Therapy for CFS" Review
It appears that Cochrane will NOT temporarily remove a review from its database that claims exercise therapy is effective for
#MEAction Scotland launch their Manifesto
After many, many months of writing, editing and revising, #MEAction Scotland is finally ready to launch its manifesto! Thank
Mary Gelpi Sends 50K Petition to NIH Director, Francis Collins
Mary Gelpi first published this post on her blog, 25 Pills a Day. Mary launched a petition asking the
Cochrane Temporarily Removes Review of "Exercise Therapy for CFS"
Cochrane has temporarily removed a review from its database that claims exercise therapy is effective for chronic fatigue syndrome
The final NICE scope is here: read our analysis
N.b. We wrote this article prior to more of the appointments for the guideline development committee being made. Some
New York #MEAction Protests Per Fink at Columbia University – Here's what happened
The protest against the Danish physician, Per Fink, last week demonstrates how our community takes action in a variety
#MEAction keeps up the political heat of ME in the UK Parliament
A productive and extremely positive meeting on the current developments on ME in the UK took place on Monday,
It has been an Intense Week!
It Has Been A HUGE Week in the U.S.! This last week has been a bit of a whirlwind
Join the fight against stigma and pseudoscience in New York
This weekend, the New York State Psychiatric Institute is hosting a conference on psychosomatic illness at Columbia University Medical
ACTIVISTS PROTEST SPEAKER AT COLUMBIA UNIVERSITY CONFERENCE
ACTIVISTS PROTEST SPEAKER AT COLUMBIA UNIVERSITY CONFERENCE Human Rights Abuser Per Fink is Not Welcome in New York Follow
#MEAction Welcomes U.S. Advocacy Manager
We at #MEAction are so excited to welcome Erin Roediger as our new U.S. Advocacy Manager! We are thrilled
UK: More than 250 GPs Attended ME Workshop at the RCGP Conference
A week after the recent RCGP Annual Primary Care Conference & Exhibition held in Glasgow on the 4th –
CDC Update: NYS Dept. of Health and #MEAction Bid for Contract
On August 27th, #MEAction published a petition calling for the U.S. Center for Disease Control and Prevention (CDC) to
Mobilize your Medical Providers to Watch Unrest for Credit
PLEASE NOTE: The Unrest CME has now expired. However, you can still recommend the film to your provider and
Per Fink is coming to US this week! Here's 3 actions you can take
The Danish physician, Per Fink, is traveling to the United States to speak about his unscientific and dangerous idea that myalgic encephalomyelitis (ME)
#MEAction Sends Letter to HHS Demanding New Federal Committee on ME
Last month, our community marshaled together in a mass protest on social media to tell the U.S. Health and Human
Enrolling: White Matter Evaluation with Stanford University
Researchers at Stanford University have discovered that the brains of patients with ME display abnormalities in the white matter
Emerge Australia Releases Report on National Survey of ME Patients
Emerge Australia has released a report on the findings of a survey of more than 600 Australians with ME/CFS. The National Survey of the Health and Wellbeing of People with ME/CFS was carried out in conjunction with ASDF Research, and highlights the need for greater understanding of ME/CFS in Australia.
#MEAction Sends Recommendations to CDC to Update its ME Website
This past July, 2018, the U.S. Center for Disease Control and Prevention (CDC) launched new webpages about myalgic encephalomyelitis
Meet with your MP about ME – Our Toolkit shows you how!
Advocates at #MEAction UK are working hard to engage Members of Parliament in the fight for appropriate clinical care
Karina Hansen is Free from State Guardianship!
At long last, Karina Hansen is now free from state guardianship! A local court in Denmark released Karina from
Stop Per Fink from Spreading Misinformation about ME: Sign the Petition
The Danish physician, Per Fink, is traveling to the United States to speak about his unscientific and dangerous idea that myalgic encephalomyelitis (ME)
POTS and Beyond Conference 2018
The POTS and Beyond conference held in Salt Lake City this past weekend brought together experts in the field
Living Deeply in Tiny Rooms
Listen to the article: Here is a question for you: Is your life small or large? How do
Enrolling: Stanford Neuroinflammation Study
This study is interested in ME/CFS patients who would classify themselves in the severe category (mostly bedbound, could be housebound).
Take the NYU Research Survey about your ME Experience
I’m a researcher at NYU interested in the experiences of people with ME/CFS in the U.S.
UK: ME gets Attention at General Practitioners Conference
Volunteers from #MEAction Scotland will attend the annual conference of the Royal College of General Practitioners (RCGP) in Glasgow
Australia: National Committee will Issue Report on ME and CFS
The Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) Advisory Committee, set up by the National Health and Medical
Australia: Macquarie University Study will look for Hypochondria and Somatic Symptoms in CFS, Fibro and MCS
Macquarie University are recruiting people with chronic fatigue syndrome, fibromyalgia, gastrointestinal disorders and multiple chemical sensitivity for a study
Australia: Three Senators Form Parliamentary Friendship Group for ME and CFS
Three senators have formed a Parliamentary Friends of Myalgic Encephalomyelitis (ME) and chronic fatigue syndrome (CFS) group in Australia’s
Enrolling: Bateman-Horne InTime Drug Intervention Trial
The InTime Trial aims to assess the effects of the investigational drug, CT38, in terms of its safety and
Notes from FFAME Sept. 2018 Call
Hi: Greetings from FFAME, Friends, Family and Allies of ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome), Welcome: Join us for our
Join the Stanford Community Symposium via Livestream
The Stanford Genome Technology Center will host the Second Annual Community Symposium on the Molecular Basis of ME/CFS, sponsored
NOW Adopts Resolution for ME
The National Organization for Women (NOW) adopted a resolution for diseases and conditions affecting large numbers of women, including myalgic
Sign Norway's Petition: Demand Resignation of Advisory Board Promoting Biopsychosocial Model
* Nina E. Steinkopf is a ME patient activist and author of the blog www.melivet.com. The petition is addressed to the
UK Coordinator Joins #MEAction Team
#MEAction is thrilled to welcome aboard UK Coordinator, Espe Moreno, for the UK coordinator position this fall. Based in