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Transcript: Solve ME/CFS Interviews Dr. Avi Nath
Dr. Zaher Nahle from the Solve ME/CFS Initiative recently interviewed Dr. Avi Nath, who is leading the intramural study
Updates from the first #MillionsMissing Meeting
Last week, #MEAction had its first planning call for the May 25th #MillionsMissing protest. The protest, with the theme
British doctor known for defending children prohibited from treating ME patients
On 20 April, the UK’s General Medical Council (GMC) imposed limits on the medical license of Dr Nigel Speight, well known for his work in protecting children with ME/CFS against inappropriate psychological intervention and removal from their families. The limits come after a complaint from Esther Crawley, medical advisor to the Association of Young People with ME.
Support the #MillionsMissing Seattle Protest on May 25
#MEAction Washington is asking all of Seattle to come out and support our #MissingMillions protest scheduled for May 25 in front of the Henry M. Jackson Federal building at 915 2nd Avenue in downtown Seattle.
#MEAction welcomes our new deputy community organizer
Paige is a recent graduate from NC State University with a degree in biomedical engineering. She was diagnosed with
#MEAction welcomes our new community organizer
Adriane Tillman is a writer, journalist, traveler, thinker, lover of art, dance and books. Adriane graduated with degrees in
Light up the Night on May 12, 2016!
a may 12 project. The challenge is to get as many buildings as possible in your country to light up with one of the 3 colours used on May 12th – blue, purple or green. We want public buildings/places like City Halls, Niagara Falls and we want individual homes lit up too!
Enter the #MillionsMissing Poetry Contest 2016
#MEAction is seeking poems to honor those around the world struggling with M.E. This call to poets is designed to complement other awareness projects taking place during May. Our goal is to proudly display the creative resources of our community and to celebrate the courage it takes to speak out about the injustices and suffering we face on a daily basis.
#MEAction Welcomes our new managing editor
We would like to welcome Jaime to our team at #MEAction as our new managing editor. With an MS,
Join the #MillionsMissing San Francisco Demonstration on May 25
Please join us in San Francisco, or send us your photo. Help us all to be seen and heard!
FUNDRAISER: Please Donate to Anne's Surgery Fund
Anne LiConti is a member of the ME/CFS community who needs our help to obtain a life-saving surgery. Anne’s
Keep PACE out of WebMD and HealthDay
Web MD, the largest online publisher of news and information regarding health and well-being, has released its “latest news” about ME/CFS in an article based on the discredited PACE trials. It asserts that “British researchers concluded that a form of talk therapy, called cognitive behavior therapy, and graded exercise therapy are among the best treatments for chronic fatigue.”
Meet the Scientists: Dr Sarah Knight
Meet the Scientists: Meet Dr Sarah Knight, looking at brain scans for neurological markers in children and adolescents with ME/CFS (Canadian Consensus Criteria).
Communications with NIH
We wanted to be clear about our communications with NIH since there has been some conflicting information. The founders of #MEAction
#MEAction USA leaves the USAWG
We wanted to take this opportunity to announce to the community that #MEAction USA has decided to formally leave the
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