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Kickstart for Lipkin and Hornig's BIG Microbiome Study
A larger, stronger, even more robust microbial diversity and immunity study is starting at Columbia Center for Infection &
Petition: Get Sweden To Support International ME/CFS Projects
I want Sweden to contribute to international research for ME / CFS – it will also help you! Sweden has about 40 000 people suffering from ME / CFS. I hope that Sweden can contribute to the Open Medicine Foundation and Lipkin / Hornig study.
Contractor: Help CDC Develop ME/CFS Materials from IOM Report
CDC – Collaboration to Develop ME/CFS Educational Materials Based on IOM Report The CDC is requesting quotes from business
Study shows gender differences in CFS
Spanish researchers find differences in men and women with CFS/ME.
Ice Bucket Challenge funds breakthrough
The ALS Ice Bucket Challenge raised more than $100 million, which resulted in a research breakthrough.
Ron Davis on why his NIH proposal was rejected
Ron Davis and Janet Dafoe had to watch as their son Whitney Dafoe deteriorated from an active, world-traveling photographer to
NIH awards $766K to Lipkin and Hornig
The US National Institutes of Health (NIH) has awarded a total of $1.3 million for ME research to three
NIH: ME/CFS research applications are low quality
When we started working on the 21st Century Cures Act lobbying campaign we quickly learned that NIH officials are
Australian research into ME/CFS in adolescents
Research into neurological biomarkers in paediatric ME/CFS begins in Australia
Couple battles ME and HIV
The moving story of Franky, an ME patient and Randy, his HIV positive caretaker and partner. Every once in a while
Lipkin and Hornig nail #ChilliMEchallenge as donations top $0.75 million
Three Quarters of a Million Dollars for ME/CFS Research at Columbia University! [pullquote align=”full” cite=”” link=”” color=”#E7453A” class=”” size=””]”ME/CFS
Help us get ME in the 21st Century Cures Act
#MEAction recently launched as an online platform to help anyone become an advocate. Now we are announcing our own
DePaul Fatigue Study: ME, CFS, MS, Lupus, and Cancer
DePaul University researchers invite persons with ME, CFS, MS, Lupus, and Cancer to participate in a voluntary research study to determine which symptoms may be commonly experienced by individuals in multiple fatiguing illness groups, and which symptoms may be unique to each illness. Participation includes completion of a confidential online questionnaire, which takes approximately 45 minutes to complete.
Australia: Discuss Primary Health Care for Chronic Conditions
Australian survey on ‘Better Outcomes for People with Chronic and Complex Conditions Through Primary Health Care’
Fund Research into CFS/ME and Educate Health Professionals
I am one of the 250,000 people in the UK suffering with CFS/ME. Please help us to get the help that we so desperately need.
Study overturns old ideas on mitochondria
“Scientists are reporting the first clear evidence that muscle cells distribute energy primarily by the rapid conduction of electrical charges through a vast, interconnected network of mitochondria — the cell’s “powerhouse” — in a way that resembles the wire grid that distributes power throughout a city.”
Ampligen price more than doubles, available soon in Europe
Ampligen price more than doubling in the US? As many patients who are receiving Ampligen in the US already know,
Help Shape Research in the NHS
The UK’s National Institute for Health Research (NIHR) is asking for suggestions from patients, carers and members of the public for tests and treatments that need to be researched.
Tell the UK government to speed up use of new treatments and tests
This is the UK government review on how to get newly researched treatments and tests to patients more quickly and has asked patients to engage with our views.
NHS Citizen Gather Tool for Myalgic Encephalomyelitis
NHS Citizen Gather is a way for the public to play a more active role in NHS England’s decision making.
Get ME/CFS on HBO's "Last Night Tonight with John Oliver"
John Oliver, please talk about ME/CFS Funding! Please sign up/login to HBO’s “Last Week with John Oliver” page to
Should we oppose the Senate proposal to cut CDC funding to zero?
Jennie Spotila is an ME/CFS patient and advocate who has done extensive research on government funding for CFS. She
Suffering the Silence Campaign for M.E.
Write “M.E.” on your left hand or forearm (if you do not want to use marker on your skin, you can improvise with a piece of paper as many have done). Cover your mouth with your hand and make sure to look into your camera lens. Upload to Twitter or Instagram with the hashtags: #sufferingthesilence #MEAction and #severeme. If you are on Facebook, you will need to post to The #MEAction Network page AND use the hashtags above.
Four ways to Observe Severe ME Awareness Day
Saturday, August 8th is Severe ME Day. It is a day of awareness raising for those suffering severe myalgic
Send a letter to Reinstate CDC Funding for ME/CFS
We at the Solve ME/CFS initiative are calling for the CDC to reinstate funding for ME/CFS and we need your
OMF Severely Ill Patient Study Gets $500,000 donation
Sign a petition to Reinstate Federal Research Funding for ME/CFS
Help Find a Cure for Whitney Dafoe and others like him!
Hearing that funding has been reduced to nothing is heartbreaking. Please hear out these words from something who is suffering, and help him:
Portraits of invisible illness
Juliet Chenery-Robson is a freelance photo-journalist and editor in the UK. She had to put aside her career and become
Take the funding equality petition to the streets
The US funding equality petition has over 4,000 signatures. We still have a lot of work to do to
UK Equality Act: share your view
Has the Equality Act helped prevent discrimination against people with M.E. in the UK? Share your views and experience in Action for M.E.’s short survey.
Thank you DePaul! #ChilliMEchallenge for #MEAction
Leonard Jason and the DePaul Research team’s #ChilliMEchallenge supporting #MEAction Thank you to the entire team at DePaul’s Center
CDC – Public Health Promotion of Chronic Fatigue Syndrome
The CDC wants information from businesses about producing public radio/audio recordings to increase ME/CFS awareness
Deadline: Aug 05, 2015 4:00 pm Eastern
Objectives:
The goal of this work is to increase awareness of CFS through the use of public radio/audio recording. The specific objectives are to 1) produce radio/audio recording, 2) produce segments that are broadcast on NPR’s Morning Edition and on the NPR website; and 3) increase awareness of CFS and further facilitate the support of loved ones and society as a whole to improve the quality of life for patients with CFS.
Suffering the Silence: Portraits of Chronic Illness
This beautiful photography project, Suffering the Silence, aims to make more visible the millions of Americans suffering from invisible
Cort Johnson: Fibromyalgia and the 'Advocacy Gap'
Cort Johnson has a fascinating new post up about the rise and fall of Fibromyalgia funding over the last fifteen years
ME patients have among the poorest quality of life
A new Danish study shows that ME patients have among the greatest levels of disability when compared to other common
Australian politician Nicole Lawder takes the Chilli ME Challenge
A constituent with ME in the Australian Capital Territory (ACT) sent the Chilli ME Challenge to one of her representatives and
Fund the SMCI Defeat ME/CFS Research Plan
ME/CFS is an extremely complex disease that is poorly understood by medical science. To date, much of the research has been conducted on a small scale, targeting single aspects of the disease. Ambitious and groundbreaking, the Solve ME/CFS Initiative’s DEFEAT ME/CFS is a comprehensive plan aimed at mastering the complexity of ME/CFS to render meaningful results, bringing us closer to a cure.
News from Wales
The situation for people with ME in Wales is extremely difficult. This is because there is no Specialist Care
Stanford: Women's immune system genes are different from men's
Using a new technology that allows the sampling of living T-cells in real time, researchers at Stanford University have found
Help Action for ME Give Feedback to the House of Lords
Action for M.E. is submitting feedback to the United Kingdom’s House of Lords Select Committee on Equality Act The
Comment on the US NIH Strategic Plan
The US NIH requests public comments on their strategic plan The United States National Institutes of Health wants feedback
U.S. Funding petition: help us target key states
Is your senator a member of the Health, Education, Labor and Pensions (HELP) Committee? Do you have friends
Life with M.E. – Short Film Fundraiser
Change For M.E. Change For Us is creating a short film about discrimination and neglect that those living with M.E. must face every day in the medical community. Our volunteers are raring to go, now we just need vital funding…
Tell Congress We Need An ME Champion
Use the easy one click letter to send Llewellyn King’s article in the Congress Blog looking for a congressional representative to take on the campaign for ME.
CFSAC Meeting Welcomes Public Comments
The Chronic Fatigue Syndrome Advisory Committee (CFSAC) will hold a public meeting on Tuesday, August 18, 2015, from 9:00
#MEAction Launch Video
Myalgic Encephalomyelitis needs activism. There is so much work to be done in our community and so many people
Vote Daily To Help Win Research Money For ME!
Please vote DAILY to help the National ME/FM Action Network win $2,000 in research money in the Karma Wellness Water contest!
Llewellyn King: Virus Hunters Turn to Chilli Peppers
Excerpts from Llewellyn King’s article Virus Hunters Turn to Social Media — and Chili Peppers posted on Huffington Post,
Norway Combats the "Stress Theory" for ME/CFS
This article by Ola Didrik Saugstad was originally published 14 July 2015, at. 8:00 in leading Norwegian newspaper Dagbladet.no.
BBC journalist's blog on ME
I would like to share an incredible blog post written by John Darvall, the BBC radio journalist who interviewed
How to Organize a World-Changing Petition
Consider your target It’s only natural that targets might be institutions. Try to address your petition to specific individuals
Write to the Australian Government's Inquiry into Chronic Disease
Australian Parliament is asking for public submissions into chronic disease prevention and management in primary health care, let’s tell them about ME and ask for help!