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Samuel Wales, who has had ME for many years, has kindly allowed us to republish his latest blog post,
The National Human Genome Research Institute (NHGRI) will launch the National DNA Day Reddit “Ask Me Anything” (AMA) Series
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”
Photo from The Center’s 1994 Gay Pride March on the U.N. Recently, ME activists have been reaching out
#MillionsMissing is fast approaching on May 12th, and we are thrilled to see cities across the world
#MEAction is a global, grassroots network for people with Myalgic Encephalomyelitis based in Los Angeles. We’re seeking a summer
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.
The success of #MEAction – to achieve health equity for people with myalgic encephalomyelitis – is in
What would have been the outcome of the PACE trial had the investigators followed its original protocol instead of
Yes, you read right! Thanks to the incredible community outreach over the course of just a few days, TEN
Following the tragic death of Robert Courtney, some of his friends created the tribute below, and provided the message
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!
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.
“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.
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! Please take this opportunity to call and email your House representative today to request they sign
The first draft of the ME/CFS Common Data Elements (CDE) project is now available to review, conducted by the National
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.
As was previously reported by #MEAction, Dr Sarah Myhill has made a formal complaint to the General Medical Council
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: an analysis of the response
#MEAction is thrilled to announce that it has received a $50,000 donation from the Pineapple Fund, an anonymous donor who
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.
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.
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.
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.
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.
OMF funded Metabolomics Validation Study update
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.
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.
A Westminster Hall debate on the PACE trial has been scheduled for Tuesday, 20th Feb., 11-11:30 a.m. Carol Monaghan
ME advocate Mary Dimmock has written a comprehensive report about the flawed science that led to the recommendation of
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.
A Medical Education Working Group has been created by the Chronic Fatigue Syndrome Advisory Committee (CFSAC) to provide recommendations
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’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.
CFSAC is Wednesday (12/13) and Thursday (12/14) of this week! Please stand with us as we continue to urge