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CFS Advisory Committee Meets
The CFS Advisory Committee meeting included reports from federal agencies and substantive recommendations from subcommittees. But public comments were a reminder that we are running out of time.
Swedish Government “no interest at all” in ME/CFS
A Swedish ME/CFS charity has slammed the attitude of the country’s government towards the disease. In an interview with
Donate to Columbia's Center for Infection and Immunity
The Center for Infection and Immunity (CII) at the Mailman School of Public Health in New York is internationally recognized as the world’s largest and most advanced academic center in microbe discovery, identification and diagnosis. Dr. Lipkin and Dr. Hornig and the CII team are thoroughly on the case of ME/CFS but they need our community support.
AIDS activist with ME speaks at CFSAC
An AIDS activist and member of ACT UP/NY who has been newly diagnosed with ME has criticized US government
A personal appeal by Holly L.
Recently, I was sitting in my floor sorting through old shoes. I came across the shoe in the picture.
#MillionsMissing Global Protest coming to Melbourne
Melbourne’s #MillionsMissing event is on 25 May from 12-2pm on the lawns of Melbourne’s State Library of Victoria, Australia. Part of the globlal protest movement!
Dr Hornig’s talk in Sweden now available
Dr Hornig went into more depth about their published cytokine work, as well as what they are working on and trying to achieve. The talk was jam-packed with great science and information. Dr Hornig talks about the crisis in funding, looking at gene expression and gene variants, screening for up to 1.7 million vertebrate viruses, metabolomics, looking at how the immune system and the microbiome could affect metabolism and the brain – and much, much more!
Donate to Marathon Runner to Support Invest in ME
I’m running my sixth EU marathon in Stockholm, Sweden on June 4th for biomedical ME research projects via Invest
UK plans world’s biggest biomedical ME/CFS study
Biomedical scientists from a range of disciplines met for a two-day workshop in Bristol on 13 and 14 April to
UK ME/CFS Biobank opens for business
Dr Charles Shepherd of the ME Association has announced that the UK’s ME/CFS Biobank is now ready to send
CFSAC May 17-18 meetings to be livestreamed
The spring meeting of the US CFS Advisory Committee (CFSAC) will take place on Tuesday May 17 and Wednesday
Send this personal appeal to healthy volunteers
Hi, everyone! This is more of an opinion piece, though it does have to do with #MillionsMissing. As you
Brain connectivity problems cause signalling problems in CFS
Australian researchers have found an abnormal centre in the brain which may explain problems with the signalling around the body.
Share #DontIgnoreME films to raise awareness
This M.E. Awareness Month, our is simple: don’t ignore M.E. To spread this message, Action for M.E. launched three films as part of M.E. Awareness Week. Starring Sharon and Douglas, who have M.E., Sharon’s partner Connor, and our medical advisers Dr Gregor Purdie and Prof Julia Newton, each focuses on a different aspect of M.E. and its impact.
Racianello: PACE obfuscation will continue “until we are all dead”
Professor Vincent Racianello of Columbia University has said of the PACE trial controversy, “I think they are going to
Create a walk, run, or swimming event to raise money for ME!
The idea behind Walk for ME is that friends and family of an ME sufferer do a sponsored walk, run or swim on their behalf, hence the name Walk for ME or Walk for me.
Use these incredible #MillionsMissing posters!
Recently, a #MillionsMissing artist has created a compelling series of posters for the campaign that illustrate the concept of
Patient-friendly version of Edwards et al.'s assessment of ME/CFS research
ME/CFS patient and science blogger Simon McGrath has produced a patient-friendly version of a recent peer-reviewed editorial on the disease that
IACFS/ME conference to include Koroshetz and Fluge
This year’s conference of the International Association for CFS/ME (IACFS/ME) in Fort Lauderdale, Florida on 27–30 October will include
Fluge and Mella's search for genetic markers
In Dr. Albright’s study of the families of ME/CFS patients in Utah, risk of ME was found to be
UNSW tests graded exercise on mild CFS patients
Australia’s University of NSW’s Psychiatry Department tested a graded activity program on 25 patients with chronic fatigue syndrome. Before the study, patients could complete around 4 hours of ‘moderate intensity exercise’ a week (self-reported). It was not measured or recorded at the end of the program but the study found small improvements in cognitive performance, with some caveats.
Online TV show to discuss ME/CFS Centers of Excellence
Dr Kenneth J. Friedman will discuss the CFS Advisory Committee’s (CFSAC’s) upcoming proposal for ME/CFS Centers of Excellence and
Attend the Protest Meeting Tomorrow
These demands were originally intended for a protest in Washington D.C. alone, but over time, #MillionsMissing has grown into
Jason study compares housebound and non-housebound patients
A new study was published recently in the journal Chronic Illness, entitled Housebound versus nonhousebound patients with myalgic encephalomyelitis
Download the #MillionsMissing Twibbon
Announcing the #MillionsMissing Twibbon — now it’s easier than ever to add the #MillionsMissing filter to your photo on
Send your shoes to #MillionsMissing by Thursday
#MillionsMissing is calling for some literal boots on the ground, and the deadline is fast approaching. If you want
Latest in Solve webinar series
The latest webinars in Solve ME/CFS Initiative’s 2016 series will soon take place, with Dr Jarred Younger speaking on
Purchase your #MillionsMissing T-Shirt!
#MEAction proudly announces the launch of its #MillionsMissing Zazzle Store! You can purchase #MillionsMissing tee shirts and buttons for
Support Tanya's life-saving fundraiser
Tanya is a remarkable young woman in desperate need of life-saving financial support. Please visit her fundraising site and share widely.
Patients send Norwegian Research Council over 700 research ideas
The Norwegian Research Council has announced that it received 737 research proposals from ME/CFS patients and their families in
Donate to our play about ME/CFS
Gemma Climbs Her Mountain uses both my story and the testimony of over 200 patients to convey the awful reality of living with this disease.
Fundraiser: #MillionsMissing needs your help!
On May 25, 2016, #MEAction is sponsoring a community-organized protest at Departments of Health and Human Services (HHS) across
UK: Ask your MP to support release of PACE
Send an awareness letter to your MP now and formally invite them to attend the APPG meeting on M.E. and to support the removal of psychiatry from M.E.
Progressive Brain Changes in Patients with Chronic Fatigue Syndrome: Are our brains starved of oxygen?
A recent Australian study, Progressive Brain Changes in Patients With Chronic Fatigue Syndrome: A Longitudinal MRI Study finds that
Add the Filter your profile pic for #MillionsMissing
Introducing the #MillionsMissing Profile Filter App! This app was designed to help raise awareness for the millions of people
Dr Jarred Younger continues YouTube webinars
Dr Jarred Younger has completed another in his ongoing series of live webinars and recorded videos on his research
NIH's Vicky Whittemore to speak at Invest in ME conference
Invest in ME (IiME) have announced that Dr Vicky Whittemore of the US National Institutes of Health (NIH) will
RCCX Project, Inc.: Explore Role of RCCX Module in Familial Chronic Illness Clusters
Physician and patient, Sharon Meglathery MD, describes how she developed the RCCX Theory as a result of clinical observation, being a patient herself and having another patient mention the RCCX. She explains that the full theory is on her website www.rccxandillness.com. She then talks about meeting Karen Herbst MD PhD Endocrinologist through the website and setting up an IRB to study the RCCX Theory. Finally , she describes developing a non-profit to fund research into the RCCX module’s possible connection with familial chronic illness clusters (EDS-HT, CFS, FM, Lyme, MCAS, POTS, Psychiatric Spectrum, Pain, Autoimmune/Immunological, Endocrine, Adipose, Neurological Disorders, etc.). Donations can be made at www.rccxproject.org.
Wear Your Undies on the Outside for the Open Medicine Foundation!
But that doesn’t answer the question: what’s with the cape and tighty-whiteys?
Australia: ME Awareness Week 11-17 May
Australian capital cities light up blue for ME Awareness Week from 11-17 May.
#MillionsMissing announces US protest demands
ANNOUNCING MEETING ABOUT THE DEMANDS These demands were originally intended for a protest in Washington D.C. alone, but over
Response to Professor Stephen Holgate: UK has “dream team” for Grand Challenge
The article Professor Stephen Holgate: UK has “dream team” for Grand Challenge has raised significant concerns in the patient community.
Patients and professor publish biomedical ME/CFS paper
Professor Jonathan Edwards, along with several ME/CFS patients and a carer with scientific backgrounds have co-authored a peer-reviewed editorial
#MillionsMissing: your shoes now have a final destination!
#MillionsMissing now has an address where you can send your shoes! We are asking patients who are unable to
Petition: #MillionsMissing teams up with Mary Gelpi for research funding
Many of us have already seen and signed Mary Gelpi’s petition asking the NIH to increase its research budget
The Psychologist: PACE has “problems with transparency”
Professor Chris Ferguson has called the PACE trial authors’ failure to release data from the trial one of “the
Professor Stephen Holgate: UK has “dream team” for Grand Challenge
________ Note: This article has been updated to provide context about the long-running controversy over the CMRC’s inclusion of
Send your ME/CFS story on a 240-km journey
On Saturday, 7 May 2016, Mike Sutton will begin a 240-km (150-mi) journey along the Camino del Norte to raise
NIH to focus its 'world-class' technology and expertise on ME/CFS
A pdf of this article is now available here. On 21 April Dr Avindra Nath gave a Solve ME/CFS
Contribute to #May12BlogBomb in 2016!
May 12th Awareness Day is a great day to share a blog post. If you are writing a post, please consider using the tag #May12BlogBomb when you share your post on social media, and, also submitting the blog link for inclusion on the 2016 #May12BlogBomb Link List that will be collated on Sally Burch’s blog Just ME
10 things you can do for #MillionsMissing with limited spoons
The #MillionsMissing protest is full-steam-ahead: we’re mobilizing in Washington D.C., Seattle, San Fransisco, and Dallas; we’re revving up our
Centre for Welfare Reform criticises PACE trial
The Centre for Welfare Reform has published a 64-page report criticising the PACE trial and relating the study to
Send a Special #MillionsMissing Advocacy Kit to Congress, Courtesy of the Blue Ribbon Foundation
The Blue Ribbon Foundation will have this offer available until May 19th, and will send out all orders on May 20th to reach the state representatives’ desks on or by May 25th, in a virtual protest. If you are not able to physically attend either of the protest sites, this is an excellent opportunity to make your voice heard.