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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.
Don't Miss the CFS Advisory Committee Meeting This Wednesday & Thursday
CFSAC is Wednesday (12/13) and Thursday (12/14) of this week! Please stand with us as we continue to urge
UNREST: Best Practices for Hosting a Community Screening
This guide will provide you with ideas for hosting your own impactful screening of Unrest that will be well-attended,
A New Non-Profit for ME & CFS Comes Online
The American ME and CFS Society is live, and we need your participation!
OMF Shares Resources to Help Children with ME/CFS Succeed in School
Dr. Faith Newton, Deleware State University, has created several resources to help children with ME/CFS improve their educational outcomes including the newest piece, a sample physician’s letter.
OMF Welcomes Jonas Bergquist, MD, PhD, to the OMF Scientific Advisory Board
#OMFScienceWednesday showcases Dr. Jonas Bergquist.
OMF Science Wednesday – Personalized Medicine
What is Personalized Health? – How researchers are using personalized health to understand ME/CFS
Innovative Organizing for UNREST in Boston: Don't Miss our Nov. 12 Screening
This is an exciting time for ME advocacy in Boston, Massachusetts. We are preparing for our November 12th, Sunday
What Did the Parliamentary Unrest Event Achieve?
Tuesday 24th Oct., 2017 will long be remembered as a significant day for anyone involved in ME politics.
Solve ME/CFS Initiative Announces 2017 Ramsay Award Recipients
The Solve ME/CFS Initiative (SMCI) announced the recipients of the 2017 Ramsay Award Program on Tuesday. The Ramsay Award Program, now in its second year, is a competitive grant that funds ME/CFS researchers at every stage of their careers. The five winning proposals receive one year of funding to research a diverse range of topics including immunology, bioenergetics, metabolomics, microbiome and neuroendocrine biology. The awardees hail from six different countries across the globe.
Finding Ourselves in Others: A Tale of Watching Unrest
This past spring I attended a screening for Unrest at the Ted Rogers Cinema in Toronto. Something powerfully transformative happened during the screening. Something that can’t be articulated in a review.
Living w/ ME Support Group: November & December Schedule
Our November and December schedule for the Living w/ ME Support Group has just been announced. Sunday, November 12:
OMF Introduces #OMFScienceWednesday
Learn about science that OMF is supporting. Follow OMF on Facebook and Twitter.
NICE: Listen to the People
As the U.K. prepares to review its national clinical guidelines for ME, it is high-time that the National Institute for
Stanford Med X Conference offers grant for patients & caregivers
The Stanford Medicine X conference is offering a scholarship to attend the April 28-29, 2018 conference, and receive funding for
How to Volunteer with #MEAction
Want to become a part of the global team of #MEAction volunteers? Interested in getting more involved in general
SMCI Holds ME/CFS Research Discovery Forum
The Solve ME/CFS Initiative (SMCI) held its second annual Discovery Forum Saturday October 14. The forum dubbed “a new era in ME/CFS research” brought together leaders from academia, government agencies, private clinics, biotech and research institutions to discuss developments in the field of ME/CFS research.
OMF TRIPLE TUESDAY: TRIPLE YOUR IMPACT FOR A CURE
Open Medicine Foundation is excited to launch Triple Giving Tuesday OMF which will run from Tuesday, Oct. 17, through
The End ME/CFS Tour in Boston w/ Linda Tannenbaum
Open Medicine Foundation (OMF) president, Linda Tannenbaum, will give a special lecture on the state of ME/CFS research at Newton-Wellesley Hospital
Is the Dutch Health Council really going to Ignore 10,000 signatures?
Keep up-to-date on this issue by following the Twitter accounts @mecvsnieuws and @ME_gids More than 10,400 signatures for the Dutch
The End ME/CFS Tour in NYC w/ Linda Tannenbaum
Open Medicine Foundation (OMF) president, Linda Tannenbaum, will give a special lecture on the state of ME/CFS research at
OMF Strengthens Our International Ties – Corrected Link to Translations
OMF expands international outreach. Corrected link to the translation page.
A New Era for ME/CFS Research – SMCI’s Discovery Forum
Announcing Discovery Forum 2017: A New Era in ME/CFS Research