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A song for ME: Blowin’ in the Wind
The following arrangement of Blowin’ in the Wind, with alternative lyrics about the struggles faced by people
NIH reply to my open letter (and a legal question from a peasant)
Samuel Wales, who has had ME for many years, has kindly allowed us to republish his latest blog post,
Action Alert: Ask Francis Collins Anything this Friday at 2pm EST
The National Human Genome Research Institute (NHGRI) will launch the National DNA Day Reddit “Ask Me Anything” (AMA) Series
Sharing UNREST through Library Donations
Activism doesn’t always have to take place in government offices or with signs and shouting; it can take
A Tribute to Mag Friel
I know hardly anything of Mag’s life before she fell ill in 1993. We were witnesses to each other’s ‘now’. There are clues though: when I sent our shoes to the #MillionsMissing protest, Mag selected a pair of dainty black Velours stiletto heels with pointed toes. Imagine her staccato gait – upright and stable! Last year, while Cannes was in the news, she wrote: “May 1991 sailed to Cannes on my partner’s yacht, hoping to complete on 5 million film deal we’d worked on for 4 years. May 2017 achieved my goal of having bed sheet changed, first time in months. Heaven. Happy ME Awareness Day. Love and eternal hope for us all. xxxxxx”
Activism Update from NY – Reaching Out to LGBTQ Community
Photo from The Center’s 1994 Gay Pride March on the U.N. Recently, ME activists have been reaching out
Join the #MillionsMissing – from your bed, your home, a local park
#MillionsMissing is fast approaching on May 12th, and we are thrilled to see cities across the world
Internship Opportunity: Medical Outreach and Science Communications
#MEAction is a global, grassroots network for people with Myalgic Encephalomyelitis based in Los Angeles. We’re seeking a summer
Chronic Illness Foundation Launches in Pakistan – Call for Support
Looking for volunteers to launch our Neglected Chronic Illnesses Foundation – Pakistan’s Facebook page. This foundation will be the first to tackle MECFS in Pakistan and will serve as a charity and advocacy organisation – providing patients care; with a fully rounded approach.
#MEAction Volunteer of the Month: Congressional Advocate
The success of #MEAction – to achieve health equity for people with myalgic encephalomyelitis – is in
CFS Advisory Committee Seeks Voting Members
The U.S. Chronic Fatigue Advisory Committee (CFSAC) is looking to fill six vacant positions as voting members: One
Reanalysis of PACE Trial Shows GET and CBT are Ineffective
What would have been the outcome of the PACE trial had the investigators followed its original protocol instead of
Dutch Health Council Downgrades GET for ME/CFS
Author: Dutch Citizens’ Initiative “Recognize ME” (Group ME-TheHague). In the release of its much-anticipated report, the Dutch Health Council
Join SMCI on Capitol Hill for ME/CFS Advocacy Day
The Solve ME/CFS Initiative’s second annual ME/CFS Advocacy Day is May 15th in Washington, D.C. Registration is recommended by April 1st.
Ten Percent of U.S. House Representatives Show Support for ME
Yes, you read right! Thanks to the incredible community outreach over the course of just a few days, TEN
A tribute to ‘Bob’ – Robert Courtney, ME activist, fundraiser, researcher, and friend
Following the tragic death of Robert Courtney, some of his friends created the tribute below, and provided the message
Call-to-Action: Urge your State Health Department to Track ME!
Urge your state health department to track myalgic encephalomyelitis/ chronic fatigue syndrome!
Call-to-Action: Please email your state health department and request they track ME/CFS (we have provided the email script for your convenience). A national conference will take place mid-April where states will decide which diseases to track as part of its Behavioral Risk Factor Surveillance System (BRFSS).
If government officials don’t track ME/CFS, how will they know that it is a problem!
Join our Support Group for Caregivers
Are you a caregiver (spouse, partner, sibling, parent) of someone with Myalgic Encephalomyelitis? Are you looking for a community
OMF's End ME/CFS Worldwide Tour Announces Visits to The Netherlands and Italy
On OMF’s End ME/CFS Worldwide Tour to the Netherlands and Italy will include a presentation from Linda Tannenbaum, OMF CEO/President and interactive Q&A. The Tour is sharing hope and raising awareness.
OMF to Attend First ME/CFS Conference in Montreal
“Advancing an International Research Agenda to Address ME/CFS Research Priorities,” the first International Canadian Conference on ME/CFS will be held May 3 – 5, 2018. Ronald W. Davis, PhD, OMF SAB Director and Linda Tannenbaum, OMF CEO/President will be presenting.
Ron Davis to speak at Biomedical Research into ME Colloquium and IIMEC13 in London
Ronald W. Davis, PhD will be a speaker at both the Biomedical Research into ME Colloquium on May 30-31, 2018 and Invest in ME Research International ME Conference (IIMEC13) on June 1, 2018 in London.
Urgent Congressional Action! Ask your Rep. to Sign Letter for ME/CFS
URGENT Congressional Action! Please take this opportunity to call and email your House representative today to request they sign
The First Draft of the Common Data Elements for ME/CFS is Ready for Review
The first draft of the ME/CFS Common Data Elements (CDE) project is now available to review, conducted by the National
Jackson Laboratory ME/CFS Center Starts Blog to Connect with Patients
The main goal of the JAX CRC project is to understand how the immune system, microbiome, and metabolome are connected and disrupted in ME/CFS, and to discover the biological basis of this chronic disease. We are hopeful that the knowledge gained from these studies will help to develop molecular markers for the diagnosis of ME/CFS, and the development of new treatments based on these new targets discovered.
Activism 101: Educate Medical Providers about ME
Most doctors, nurses and other healthcare providers belong to a medical association in order to connect to a community
Petition to support Dr Myhill’s complaint to the GMC
As was previously reported by #MEAction, Dr Sarah Myhill has made a formal complaint to the General Medical Council
#TimeForUnrest Joins #MEAction
We’re thrilled to embark on this next phase by bringing the campaign home, under the umbrella of #MEAction. This will allow us to deepen our efforts around four core areas work: public engagement & education; patient support & community organizing; advocacy; and medical & scientific outreach.
Westminster Hall Debate on the PACE trial and its effects on people with ME
Westminster Hall Debate on the PACE trial and its effects on people with ME: an analysis of the response
#MEAction receives $50K donation from Pineapple Fund
#MEAction is thrilled to announce that it has received a $50,000 donation from the Pineapple Fund, an anonymous donor who
PACE Trial 'medical scandal' Sparks UK Parliament Debate
Members of Parliament heard about the flaws of the PACE Trial – and its devastating effects on people with Myalgic Encephalomyelitis (ME) – in a Westminster Hall debate today. Twenty-six MPs attended the debate.
OMF Announces the New Analyzing Patient Data Study (APS)
This study will gather and analyze the clinical laboratory tests and results ordered by ME/CFS specialists.
OMF is hopeful that analyzing a large number of clinical records using robust statistical methods may reveal new insights.
Watch the Westminster Hall debate on PACE
A Westminster Hall debate on the PACE trial will take place on Tuesday, 20th Feb., from 11 to 11:30
What ME Activists Can Learn from the AIDS Crisis
I read “How To Survive A Plague: The Inside Story of How Citizens and Science Tamed AIDS” by David
Volunteers on Radio Scotland
Listen to MEAction volunteers on Radio Scotland! Available as an MP3 (7Mb) or stream via BBC iPlayer (starts at 36.23)
The Launch of "Science for ME" Internet Forum
Science for ME is our major new ME/CFS internet forum with a focus on community, support, advocacy – and, at the heart of it all, science. The forum opened this October and has already attracted over 500 members, with over 25,000 messages on more than 1,400 threads.
OMF Research Update from Dr. Jonas Bergquist
OMF is funding Dr. Bergquist to determine the role of hormones, proteins, and antibodies in ME/CFS. Research update.
SCMI Shares Research Update: the Ramsay Team 2
Dr. Fane Mensah (University College London (UCL)) and Ramsay Award Program 2016 Team 2 recently provided Solve ME/CFS Initiative (SMCI) with a progress update on their work. Mensah reflected on the driving force behind the study design, potential implications of the research, and the intercontinental partnership making it possible.
When Medicine Fails a Child
Two years ago, our then 10-year old son started to complain of a stomach ache that did not resolve. Other things seemed wrong, too. I did not want to be an alarmist and waited an appropriate amount of time before calling for an appointment, thinking there would be a simple solution.
Hold On, Firebird
Once upon a time, I woke up on fire. This burning was one of invisible flames, curling themselves around me and offering nothing but excruciating pain and the sort of exhaustion which bears down on you like a weight your whole body must carry.
Update on the Metabolomics Validation Study by OMF
OMF funded Metabolomics Validation Study update
OMF receives a $5 Million Gift from the Pineapple Fund – Send a Note of Thanks
OMF invites the ME/CFS community to join together to thank the Pineapple Fund by adding your appreciation to our online community-wide thank you card.
Post-Exertional Malaise & GET in ME/CFS – a guide to the research
A member of #MEAction Network Australia has written a primer, outlining the flaws in the GET research and explaining why GET is likely to be harmful for people with ME/CFS.
Have you been harmed by PACE? Send a letter.
Dr. Sarah Myhill has launched a campaign calling on all patients who feel that they have been harmed by
Urge your MP to Attend Westminster Hall Debate on PACE
A Westminster Hall debate on the PACE trial has been scheduled for Tuesday, 20th Feb., 11-11:30 a.m. Carol Monaghan
'Unrest' at the Scottish Parliament
The Time for Unrest event at the Scottish Parliament on 30th January was an opportunity to raise awareness of
UC Berkeley will Host Unrest Screening
Calling all people in the Bay Area – and beyond, You are invited to attend a screening of the
The Failure of Clinical Guidance for People with ME
ME advocate Mary Dimmock has written a comprehensive report about the flawed science that led to the recommendation of
ME/CFS Featured in Ms. Magazine
The Solve ME/CFS Initiative recently partnered with the widely-circled women’s magazine “Ms.” and connected them with renowned author Julie Rehmeyer to produce an impactful piece on ME/CFS for the Winter 2018 issue.
OMF receives $5 million donation from Pineapple Fund
Pineapple Fund was so moved by the outpouring of support from the patient community and the importance of OMF’s research that they have increased their donation to a total of $5 million for research.
The public testifies about ME
Dozens of people with Myalgic Encephalomyelitis and family members testified about the disease last December before the government agency
U.S. Advisory Committee Holds Meeting on ME/CFS
We need you! #MEAction is looking for volunteers who can help our team ensure that the CFSAC recommendations are
One Step Forward Educating the Medical Community about ME
A Medical Education Working Group has been created by the Chronic Fatigue Syndrome Advisory Committee (CFSAC) to provide recommendations
OMF Raises $1.2M to Ramp Up Collaborative Research Center at Stanford University
Announcing $1.2M in funding for the ME/CFS Collaborative Research Center at Stanford University led by Ronald W. Davis, PhD, Director of OMF’s Scientific Advisory Board.
Australia Announces a New ME/CFS Advisory Committee
Australia’s National Health and Medical Research Council (NHMRC), the Australian equivalent of the NIH, has announced the establishment of an ME/CFS Advisory Committee to advise NHMRC’s CEO, Professor Anne Kelso, on current needs for research into ME/CFS, as well as clinical guidance on the diagnosis and treatment of the illness.