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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
Open Letter Demands Removal of Netflix's "Afflicted" – Sign the Petition
On September 18th, more than 40 writers, activists, artists, filmmakers, physicians, and scientists came together to write an open
Alphabet Soup – Your Guide to Current U.S. Actions
When it rains, it pours! There has been so much activity in our US health institutions that it’s easy
NIH Creates Council to Advance ME Research
The National Institutes of Health (NIH) has formed a new council focused on how best to advance research into
Enrolling: Stanford Neuroendocrine Investivagtion
Researchers from Stanford University aim to evaluate the endocrine system in female ME patients to learn how the hypothalamic-pituitary-adrenall (HPA) axis functions
Scottish Lib. Dems Pass Motion for ME, with Amendment
ME history was made this week in the historic capital of Scotland when delegates at the Scottish Liberal Democrats
Beauty Sleeping: A Real Life Fairytale
Once upon a time there lived a very beautiful princess, and the way you could tell she was beautiful
How To Protest HHS with #MEAction
We will protest the U.S. Department of Health and Human Service virtually, on social media, on Friday, Sept. 14th. We have canceled
HHS Secretary Kills CFSAC!
If you were on the CFSAC committee, you awoke to the following email in your inbox yesterday morning: Good
Scottish Liberal Democrats will Vote on Motion for ME
At the Scottish Liberal Democrats conference this Saturday in Dunfermline, party member Emma Walker will present a motion about
Enrolling: Cornell Brain Imaging
Cornell Center for Enervating Neuroimmune Disease aims to collect brain images (MRSs) from individuals with ME to study oxidative
NIH UPDATE: COLLINS WILL MEET WITH #MEACTION REPRESENTATIVES!
The persistent dedication of our community to fight for our lives continues to yield results. We are pleased to
August 2018 — Research Roundup
August was a mixed month in the world of ME research, with some truly innovative studies coming out and
Enrolling: 23andMe Genetic Testing Study
The Institute of NeuroImmune Medicine is collecting genetic data from 23andme or ancestry.com for 10,000 patients. Their aim is
Advocacy Roundup – Holding Our Institutions Accountable
It has been a hot summer for many around the world, and another month of courage, resilience and bravery