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#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
NIH Telebriefing: Advancing the Research on ME/CFS
The NIH Pathways to Prevention workshop panel will hold a press telebriefing to discuss their findings and answer questions
Mike's EU Marathons: Raising Myalgic Encephalomyelitis Awareness across Europe
28 Marathons for Myalgic Encephalomyelitis Awareness and Research I’ll be running a marathon in each of the 28 EU
Update: Occupy USDOJ Demonstration in Washington DC
The demonstration has kicked off yesterday June 1st, with a great start, at the Justice Department in Washington DC.
Update: Marathon for Myalgic Encephalomyelitis
Tom Whittingham, running for his sister and ME Research UK Tom ran the Edinburgh marathon on May 31st as
Lymphatic vessels in the brain: Gamechanger for Neuroimmune diseases?
It’s rare that new research means rewriting textbooks. But new information discovered by University of Virginia School of Medicine researchers
Occupy the US Department of Justice
Groups of chronically disabled patients, victims of medical abuse, will be assembling for a peaceful but passionate protest on the steps of USDOJ, 950 Pennsylvania Avenue NW, Washington, DC 20530, from June 1 until July 4.
Takeaways from The ME Association's CBT, GET, and Pacing Report
ME/CFS Illness Management Survey Results “No Decisions about me without me” The ME Association just released the results of
Q&A with the OMF Severely Ill Big Data Study
The Open Medicine Foundation’s big data study on severely ill patients with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome is an exciting
New hope for those with Chronic Fatigue Syndrome
Could new cytokine research be paving the way to a diagnostic test for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome? Excerpted from
Recapping ME/CFS Awareness Day – #May12BlogBomb
May 12th is Awareness Day for ME, Fibromyalgia, Lyme Disease, Chronic Fatigue Syndrome and Multiple Chemical Sensitivity. Every year
ME Awareness – Tom's Appeal
My brother has made a video to promote his participation in the Edinburgh marathon (31st May) in aid of ME Research UK. Although partly a fundraising initiative, the video also delivers a powerful message and can be used as a tool for raising awareness. It has been viewed over 4,000 times in one week, and so far raised roughly the same amount in £. Please share as widely as possible. https://www.youtube.com/watch?v=dgovI7Q273g (or go to YouTube and search for ‘ME awareness – Tom’s appeal”
Take The Chilli M.E. Challenge
Take The Chilli M.E. Challenge. The Chilli M.E. Challenge is an advocacy initiative started by four girls who met
Recapping ME Awareness Day – May 12th, 2015
While ME awareness day does not garner the attention that other illness do, patients and advocates are working hard
Take Action for Equal Funding at NIH
Join hundreds of patients in emailing Secretary of Health Burwell and NIH Director Collins for Equal Funding for ME/CFS!
Help DePaul Researchers Learn About Post-Exertional Malaise
We are conducting a research study because we are trying to learn more about what occurs before and during post-exertional malaise for individuals with Myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS), as well as how these individuals define the term post-exertional malaise. We are asking you to be in the research because you have a diagnosis of ME or CFS, speak English, and are 18 years of age or older. If you agree to be in this study, you will be asked to complete a survey. The survey will include questions about your post-exertional malaise experiences related to your ME or CFS. We will also collect some personal and demographic information about you, such as age, gender, race, marital status, income, level of schooling, disability information, and work status. The full survey can be completed online. If there is a question you do not want to answer, you may skip it.
New Potential Cause of ME Found
New potential cause of ME found. Research found that Important signalling mechanisms are disrupted with receptors in the brain, gut,
Crowd funding for The OMF ME/CFS Severely Ill Big Data Study
As part of our OMF End ME/CFS Project, this study will conduct a comprehensive, “Big Data,” analysis on severely
ME Awareness at the Brighton Wheel and Brighton Sea Life Center
The Brighton Wheel and the Brighton Sea Life Centre were lit up blue last night in support of
More NIH Funding Needed for ME/CFS Research!
According to the recent Institute of Medicine report, up to 2.5 million Americans have chronic fatigue syndrome (ME/CFS). Patients
The $10 Challenge For Columbia CII ME/CFS Research
The Microbe Discovery Project began as a patient-driven crowdfund to raise funds for world-class researchers Dr Ian Lipkin and
Emerge Australia Health and Welfare Survey
Federation University, in collaboration with Emerge Australia, would like to invite you to participate in a health and welfare study of people with ME/CFS.
Help DePaul researchers learn more about ME related mortality
DePaul University’s Center for Community Research (under the leadership of Dr. Leonard Jason) is currently recruiting respondents for a study on myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) mortality.
Spain hologram protest
Activists in Spain, after a new gag law curtailed the freedom to protest in front of Congress or parliament buildings, staged
Retire this stock photo
Tired of reading news about ME and seeing images of people slumped at their desks or yawning? Submit your REAL photo
Fund Mike's North Pole Marathon
Running a 26.2 mile marathon at the north pole for IiME This is the challenge of a lifetime and
Scientists find clues into cognitive dysfunction in chronic fatigue syndrome
A unique pattern of immune molecules in the cerebrospinal fluid of people with myalgic encephalomyelitis/chronic fatigue syndrome have been