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Portraits of invisible illness
Juliet Chenery-Robson is a freelance photo-journalist and editor in the UK. She had to put aside her career and become
Take the funding equality petition to the streets
The US funding equality petition has over 4,000 signatures. We still have a lot of work to do to
UK Equality Act: share your view
Has the Equality Act helped prevent discrimination against people with M.E. in the UK? Share your views and experience in Action for M.E.’s short survey.
Thank you DePaul! #ChilliMEchallenge for #MEAction
Leonard Jason and the DePaul Research team’s #ChilliMEchallenge supporting #MEAction Thank you to the entire team at DePaul’s Center
CDC – Public Health Promotion of Chronic Fatigue Syndrome
The CDC wants information from businesses about producing public radio/audio recordings to increase ME/CFS awareness
Deadline: Aug 05, 2015 4:00 pm Eastern
Objectives:
The goal of this work is to increase awareness of CFS through the use of public radio/audio recording. The specific objectives are to 1) produce radio/audio recording, 2) produce segments that are broadcast on NPR’s Morning Edition and on the NPR website; and 3) increase awareness of CFS and further facilitate the support of loved ones and society as a whole to improve the quality of life for patients with CFS.
Suffering the Silence: Portraits of Chronic Illness
This beautiful photography project, Suffering the Silence, aims to make more visible the millions of Americans suffering from invisible
Cort Johnson: Fibromyalgia and the 'Advocacy Gap'
Cort Johnson has a fascinating new post up about the rise and fall of Fibromyalgia funding over the last fifteen years
ME patients have among the poorest quality of life
A new Danish study shows that ME patients have among the greatest levels of disability when compared to other common
Australian politician Nicole Lawder takes the Chilli ME Challenge
A constituent with ME in the Australian Capital Territory (ACT) sent the Chilli ME Challenge to one of her representatives and
Fund the SMCI Defeat ME/CFS Research Plan
ME/CFS is an extremely complex disease that is poorly understood by medical science. To date, much of the research has been conducted on a small scale, targeting single aspects of the disease. Ambitious and groundbreaking, the Solve ME/CFS Initiative’s DEFEAT ME/CFS is a comprehensive plan aimed at mastering the complexity of ME/CFS to render meaningful results, bringing us closer to a cure.
News from Wales
The situation for people with ME in Wales is extremely difficult. This is because there is no Specialist Care
Stanford: Women's immune system genes are different from men's
Using a new technology that allows the sampling of living T-cells in real time, researchers at Stanford University have found
Help Action for ME Give Feedback to the House of Lords
Action for M.E. is submitting feedback to the United Kingdom’s House of Lords Select Committee on Equality Act The
Comment on the US NIH Strategic Plan
The US NIH requests public comments on their strategic plan The United States National Institutes of Health wants feedback
U.S. Funding petition: help us target key states
Is your senator a member of the Health, Education, Labor and Pensions (HELP) Committee? Do you have friends
Life with M.E. – Short Film Fundraiser
Change For M.E. Change For Us is creating a short film about discrimination and neglect that those living with M.E. must face every day in the medical community. Our volunteers are raring to go, now we just need vital funding…
Tell Congress We Need An ME Champion
Use the easy one click letter to send Llewellyn King’s article in the Congress Blog looking for a congressional representative to take on the campaign for ME.
CFSAC Meeting Welcomes Public Comments
The Chronic Fatigue Syndrome Advisory Committee (CFSAC) will hold a public meeting on Tuesday, August 18, 2015, from 9:00
#MEAction Launch Video
Myalgic Encephalomyelitis needs activism. There is so much work to be done in our community and so many people
Vote Daily To Help Win Research Money For ME!
Please vote DAILY to help the National ME/FM Action Network win $2,000 in research money in the Karma Wellness Water contest!
Llewellyn King: Virus Hunters Turn to Chilli Peppers
Excerpts from Llewellyn King’s article Virus Hunters Turn to Social Media — and Chili Peppers posted on Huffington Post,
Norway Combats the "Stress Theory" for ME/CFS
This article by Ola Didrik Saugstad was originally published 14 July 2015, at. 8:00 in leading Norwegian newspaper Dagbladet.no.
BBC journalist's blog on ME
I would like to share an incredible blog post written by John Darvall, the BBC radio journalist who interviewed
How to Organize a World-Changing Petition
Consider your target It’s only natural that targets might be institutions. Try to address your petition to specific individuals
Write to the Australian Government's Inquiry into Chronic Disease
Australian Parliament is asking for public submissions into chronic disease prevention and management in primary health care, let’s tell them about ME and ask for help!
UPDATE: New Details from Open Medicine Foundation's End ME/CFS Project
Open Medicine Foundation (OMF) End ME/CFS Project This is a game-changing initiative to find a cure for ME/CFS, a
Trio of Articles from Palo Alto Online Highlight ME/CFS Patients
Palo Alto Online recently published a series of three articles highlighting the struggles faced by Mylagic Encephalomyelitis (Chronic Fatigue
Acknowledge those suffering from Chronic Illnesses.
I have started a petition as I feel the general public need to be more educated on chronic illnesses.
New Features at #MEAction!
Announcing Private Messaging, and an Idea Center with real-time notifications. You’ve all been unreasonably patient and understanding as we
Meet Marathon Mike: Running 28 Marathons for Invest in ME
Meet Mike, the man behind Mike’s EU Marathon Challenge Mike has pledged to run 28 marathons for Myalgic Encephalomyelitis
Real sufferers vs. models (portrayal of FM, CFS and CSM in the media)
Compare real sufferers of FM, CFS and MCS to models who ‘portray’ these illnesses for magazines and articles on the net is very easy (and sad)
Promote your Action at #MEAction: Why and How
Why should you promote your action at #MEAction? This article is part of an ongoing series highlighting different #MEAction
#myMEstory
As part of the #chilliMEchallenge we are encouraging people to tell us their #myMEstory and create awareness by putting a voice and a face to this illness.
UPDATE: Marathon for ME BBC Interview with Tom and Naomi Whittingham
BBC Interview about ME Awareness and Fundraising! We have been overwhelmed by the response to Tom’s Marathon for ME
Create a Petition at #MEAction: Why and How
Create a Petition at #MEAction This article is part of an ongoing series highlighting different #MEAction features and how
Create an Event at #MEAction: Why and How
Why should anyone create a #MEAction event? This article is part of an ongoing series highlighting different #MEAction features
Behind the Numbers of the #MEAction Funding Equality Petition
Why $250,000,000 in research funding? The #MEAction flagship Funding Equality Petition is called “Tell Congress to Support Funding Equality
#MEawarenesshour Special Post Exertional Malaise Hour
#MEawarenesshour: first symptom-themed hour, 24th June Next Wednesday (24th june) we’ve decided to try something a little different for
Live Webcast – Dr Lipkin and Dr Hornig take the #ChilliMEchallenge
Tune in to the LIVE webcast on July 1st, 1:00PM EST and watch Dr Ian Lipkin and Dr Mady
Ian Lipkin and Mady Hornig respond to the #ChilliMEchallenge
Researchers at Columbia CII have taken on the #chilliMEchallenge – and they just made it a whole lot spicier!
UPDATE: OMF's END ME/CFS Severely Ill Big Data study nearly 1/3 to target!
We have our next update on END ME/CFS’s Big Data study of severely ill patients and the sum raised so far is an amazing $103,840, from 235 donations.
The NIH talks ME/CFS: The P2P Workshop Report
The National Institutes of Health have released the results of their 1.5 day workshop on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.
UPDATE: #MEAwarenesshour reaches beyond Myalgic Encephalomyelitis Patients
#MEAwarenesshour uses Twitter to reach beyond the ME/CFS patient community From the organizer, Amanda Carroll: The 10th of June
Living with ME Radio interview
Radio Interview about living with ME on RTE – The Irish National Radio station After the article about living
Into the Light – An Artist book in a box, by Corina Duyn
The Artist book consists of a set of loose A5 sheets, gathered in a custom-made wooden box, reflecting on life with chronic illness seen through art and nature.
The Well Made Project – A Sense of Unexpected Events
Online art and health exhibition featuring extracts from “The State of ME” As part of London Creativity and Wellbeing
Help 6000 ME/CFS sufferers in New Zealand get a field worker
We humbly ask for the community’s help to fundraise for a field worker in Auckland, New Zealand. We hope to set a precedent for the international community, providing a platform for other countries to campaign for their own field workers
Virscan: 1 Test for every virus that has ever infected you
Excerpted from Science and Popular Science A new test called VirScan would allow a patient to be tested for
#MEawarenesshour – Time To Put ME In The Spotlight Using Twitter
Every Wednesday #MEawarenesshour is a set time to tweet and share stories about the illness, personal experiences, research, funding
A Job for a Lone Congress Member – Speak Up for ME/CFS, a Forgotten Disease
Contact your Congressional Delegation – Share Llewellyn King’s article and ask them to speak up for ME/CFS Please find
Mike's EU Marathons – #3 Helsinki (Finland)
Episode 3 of my 28 European Marathon challenge takes me to Finland! I’m running a marathon in every country
I was led to believe there was ‘no future’ with with my diagnosis. Well, I beg to differ.
I have learned to cope with M.E., a serious and potentially disabling chronic disorder, through art and creativity. Excerpted