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NIH Employs Creative Effort to Boost Current Research for ME/CFS
In a first for ME/CFS research, NIH launched a creative grant expansion program to jump start ME/CFS research in the short term by supplementing current grants.
NIH Calls For Additional Research Proposals to Study ME/CFS
In essence, the NIH is posting an open call for research scientists with proposals that may fall under the purview of the original grant for the NIH’s intramural ME/CFS study.
Join this day of protest: May 25th
#MEAction is excited to announce its first protest in Washington DC! (Now rescheduled for May 25, 2016) Please join
PETITION: ME is not MUPS (Medically Unexplained Physical Symptoms)
Dutch ME patients strongly disagree with the composition of the Dutch Health Council ME Committee and start petition “ME
Caravana La Paz: The continued fight for equality in Bolivia
On March 21st, the brave Bolivian AKIPerDis protestors began their 265 mile journey by wheelchair through the Andes mountains to
Meet the Scientists: Dr Brett Lidbury
Meet Dr Brett Lidbury, biometrics researcher at the Australian National University in Canberra, Australia.
Tell your Wales, Northern Ireland or Scotland election candidate that M.E. Matters Now!
Do you live in Wales, Northern Ireland or Scotland? Can you help push M.E. up the political agenda by sharing the M.E. Matters Now campaign manifesto?
Ask UNSW To Cancel CBT/GET Training Study
Write to the University of New South Wales and ask them not to allow a trial to train health professionals in graded exercise therapy and cognitive behaviour therapy for chronic fatigue syndrome patients in Australia.
How the UNSW Chronic Fatigue Syndrome Studies Use ‘Potentially Harmful' Guidelines
Two studies at the University of NSW are using the ‘potentially harmful’ 2002 Australian guidelines. It is time for Australia to adopt the International Consensus Criteria.
Three Biomarker Discoveries in March
March 2015 has been a busy month for biomarker discoveries for patients with chronic fatigue syndrome (Fukuda criteria), Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (Canadian Consensus Criteria) and International Consensus Criteria ME.
HHS publishes revised responses to CFSAC recommendations about NIH initiative
After responding negatively to most of CFSAC’s recommendations for the ME/CFS research program, the NIH has now revised many of their
Help Canary crowdsource archival research
Canary in a Coal Mine (working title), my documentary film about myalgic encephalomyelitis, is heading toward rough cut, an early
Sense About Statistics says: PACE trial doomed by flaws
Dr Rebecca Goldin, blogging for Sense About Statistics, has said that flaws in the design of the PACE trial
George Davey Smith to patients: “new era” for ME/CFS research
In an invited post on UK charity Action for ME’s blog, Professor George Davey Smith of Bristol University has
Petition: Keep psychiatry out of NIH study on ME/CFS
This is the first study on ME/CFS conducted by NIH in two decades. One million patients suffer from this disease, too long neglected by both CDC and NIH. It is critical that the Principle Investigators recognize existing biomedical research on the disease, as well as the results of recently commissioned studies by the Institute of Medicine for DHHS and the P2P (Pathways to Prevention) program at NIH.
Why is MEpedia so crucial?
MEpedia is a crucial tool for advocates, researchers, doctors, policy makers, and even the general public, that will allow them to find all current information on myalgic encephalomyelitis in one place.
NIH to patients, “We are your partners”
The National Institutes of Health’s (NIH’s) ‘New Deal’ for ME/CFS, particularly the intramural study, has had a very mixed
Clarification on NINDS role in ME/CFS Research
After the March 8th telebriefing with the NIH, many advocates in the ME community still came away with questions. Billie Moore, NJME/CFSA
Study says scientists must agree on classifying patients
New US paper says it is critical that scientists world-wide develop consensus on how to identify and classify chronic fatigue syndrome and myalgic encephalomyelitis patients using clinical and research criteria.
Help Disabled Bolivian Activists Cross Andes in Wheelchairs
#MEAction, in collaboration with the Association of People with Disability (APD) in Bolivia, have launched a campaign to raise
Please Donate to Help Liisa Lugus Find Housing and Long Term Care
Liisa Lugus has been bedbound with extreme myalgic encephalomyelitis for 13 years and is losing her current home. She has nowhere to go and needs our help: https://www.tilt.com/tilts/liisa-lugus-urgent-housing-and-long-term-care-fund https://www.facebook.com/friendsofliisalugus/info/?tab=page_info
#MEAction meets with Senate staffers
This week #MEAction, in collaboration with Solve ME/CFS and USAWG, conducted advocacy efforts with members of Congress to make
James Coyne Stormont talk on YouTube: PACE "outrageously bad"
Professor James Coyne’s February 9 Belfast talk, “The Scandal of the £5m PACE Trial”, is now available on YouTube.
Australia: Ask the medical research council to fund studies
Australia: Write to the National Health and Medical Research Council about funding research and updating criteria.
Announcement: May 18th Protest in Washington DC has now been rescheduled for May 25th!
#MEAction is excited to announce its first protest in Washington DC! Now rescheduled for May 25, 2016! Please join
24 organisations in 14 countries tell QMUL: release PACE data
All 13 organisations in the European ME Alliance (EMEA) have answered ME/CFS patient Clark Ellis’s call to request Queen
Art contest for young people with ME/CFS
The Pediatric and Adolescent ME/CFS Primer team is aiming to complete the new Primer by mid-October, 2016. As was done for the adult ME/CFS Primer, the team would appreciate having original artwork for the cover of the Pediatric and Adolescent ME/CFS Primer
Australia: Write to the Health Minister
Want to write to the Health Minister but need a hand? Here’s a handy guide to creating your own letter.
Now’s the time to write, before the election!
New Bill Would Up NIH/FDA Funding For Neglected Diseases
Last Thursday, Elizabeth Warren (D-MA) and Patty Murray (D-WA) introduced an important new bill which seeks to increase funding
NIH aiming to commit RFA funds to ME/CFS research
Update: NIH confirms RFAs will happen On March 30 NIH revised it’s response to the CFSAC recommendations and made
NIH: Solving ME/CFS will need “an army of really good researchers working together”
At the NIH tele-briefing on Tuesday, March 8th, Dr Walter Koroshetz, Director of NINDS set out the NIH’s strategy
CureME research news email service launches
Swedish ME patient Kasper Ezelius has announced the launch of an email service called CureME that will allow subscribers
NIH Telebriefing Full Transcript + Audio
On Tuesday, March 8th, NIH held a one hour tele-briefing to answer the community’s questions about their plans for
Unity in activism: on abusive attacks within the ME community
“Facts are stubborn things; and whatever may be our wishes, our inclinations, or the dictates of our passion, they
#MEAction delivers Lancet PACE petition, makes Wall Street Journal
#MEAction delivers Lancet PACE petition, makes Wall Street Journal #MEAction has sent an 11,000-signature petition to The Lancet, calling
March 10th Sacramento screening of Forgotten Plague
Forgotten Plague, the new documentary about ME/CFS is screening at Reading Cinemas The Tower Theatre in Sacramento, CA at 6:30pm on March 10th, 2016.
ME lectures by Mella and others available on DVD
In November 2015, six lectures on ME were held in Stavanger, Norway. The event was filmed and made into a DVD which is now available for an international audience with English subtitles for the Norwegian lectures.
Participate in the Tuesday March 8th NIH telebriefing
On Tuesday, March 8th at 10am ET, the NIH is holding a one hour tele-briefing to answer the community’s questions about
Ten organisations call for PACE data release, AYME refuses
Ten organisations so far have joined ME/CFS patient Clark Ellis’s call to Queen Mary University of London (QMUL) to
NIH to drop functional movement disorder control group from study
NIH is dropping the functional movement disorder (FMD) control group from their intramural study, according to an email Simon McGrath received from Vicky Whittemore.
#MEAction's Questions for NIH's Intramural Study Team
The US National Institutes of Health (NIH) is hosting a telebriefing on Tuesday to “share information about [their] upcoming activities and to
#MEAction Co-founder taking Leave of Absence
Our co-founder, Beth, is taking an indefinite leave-of-absence to focus on her health. She is very grateful for all
Extraordinary NIH ME/CFS study may be most comprehensive and in-depth ever
Update (Sunday March 6, 1630 GMT): NIH drops FMD control group I’d asked Dr Vicky Whittemore is she had
Griffith Uni claims breakthrough on diagnostic blood test
Australian scientists say they are close to marketing a diagnostic test for Chronic Fatigue Syndrome.
*NEW TIME * Australia: See Forgotten Plague Film in Canberra
UPDATED: Canberra screenings of film ‘Forgotten Plague’ on Friday 1 April at 6pm or Monday 4 April at 1pm.
NINDS to consider recommendations submitted by ME/CFS advocates
Recommendations submitted by advocates to NINDS to proactively contribute to a strong federal research program and to encourage collaboration between NIH and our community.
Vote: USAWG requests to NINDS director
The US Action Working Group (USAWG) is submitting a letter to NINDS director Walter Koroshetz detailing a list of requests relating
Last week at NIH: Feb 28 Update
Last Week at NIH with a focus on the post-infectious ME/CFS intramural study – You can watch an introduction
Wheelchair users in Bolivia suspended from bridge in protest
A small group of wheelchair users suspended themselves from a bridge in Bolivia to protest treatment of disabled people
Australia shouldn't fund 'totally inappropriate' CBT and GET
‘Chronic fatigue syndrome chronically underfunded’, Australian community radio current affairs program.
NIH patient participation and communication: what do you want to see?
How should patients be integrated into the NIH process? The US National Institutes of Health has made several promising, public
Solve ME/CFS discusses Walitt, patient participation with NIH
Solve ME/CFS had a conversation with Vicky Whittemore of the US National Institutes of Health today regarding some pressing issues,
Progress In ME/CFS Patient Advocacy: Overcoming The Militant Meme & Why We Must Keep Evolving
What is the role of outrage in activism? “Anger is justified but, anger can be used against you. Anger can be misplaced or anger can be the flame that fuels the kind of passion that brings about great change.”
NIH's initial response to article and comments on Walitt
Over the weekend we wrote to NIH to share our article about Brian Walitt, along with comments from the