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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.
The UK CFS/ME Research Collaborative to livestream AGM on 27 April
The 2016 Annual General Meeting of the UK CFS/ME Research Collaborative (CMRC) will be livestreamed on Wednesday 27 April, from 2.45
Help Me Find Treatment for M.E.
A link to my GoFundMe, so that I can afford to find a specialist
Put us on the map!
How many of us are out there with ME/CFS? Put yourself on the map so that we can show
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