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Study shows immune differences in moderate and severe CFS/ME
New Australian study shows immune difference in moderate and severe patients. It may lead to a test based on these markers.
Let's Make a Million For Invest In ME!
We invite you to join the expanding international community of supporters aiming to raise £1000,000 for Invest in ME Charity’s Biomedical Research Funds by May 2016.
This Video Could Save your Life
The Use of Patient Blogs as a Care Resource Thanks to Greg Crowhurst for his incredibly kind review of
An interview with lead singer of Belle and Sebastian – on life with M.E.
Stuart Murdoch talking openly about his experiences of M.E., Los Angeles, August 2015 “This is a pop band that
Julie Rehmeyer on Science and ME/CFS
Julie Rehmeyer on Science and ME/CFS Julie Rehmeyer, an award-winning science and math writer, was recently interviewed about how
MedPage Today: ME/CFS is Gaining Attention
MedPage Today Focuses on Need for Recognition of ME/CFS and Research Funding MedPage Today, a news site for medical
UK CMRC Welcomes New Sponsors and Prepares for Research Conference
The UK CFS/ME Research Collaborative People with M.E. need better treatment and support. This can only be achieved through
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Bestselling Author's Latest Novel Features Girl with ME/CFS
Bestselling Author John Connolly’s Latest Novel Features Girl with ME/CFS “I know some people with ME, and tried hard
Join Team Solve – Fundraising for ME/CFS Research
It will take more than people with ME/CFS to achieve a world free of ME/CFS. It will take a committed team of many rallying together to effect change – Families, loved ones and friends coming together to make a difference and fund progress. Join Team Solve and help us Solve ME/CFS!
Stage Your Screening of Forgotten Plague!
We’re proud to announce that our new partnership with Tugg is now LIVE! Tugg is a “theatrical-on-demand” platform that
Sign the Petition: Need NIH Funding to Cure M.E. for Millions
AIDS Research took a death sentence and made it a manageable disease. ME-CFS needs the same level of effort
CDC Funding Update: The Importance of Raising Our Voice
A month ago, patient advocate Jennifer Spotila discovered that the U.S. Senate was proposing to zero-out the ME/CFS budget at the
OMF Severely Ill Patient Study Raises $1 Million
The Open Medicine Foundation’s (OMF) Severely Ill Patient Big Data study is now fully funded with $1 million in private research funding thanks to a groundswell of crowdfunding efforts and several generous donations by anonymous donors!
Very little research has been done in the bedbound patients “Hopefully, the more severely ill will have a stronger signal of what’s going wrong.”
Couples Needed for Home-based Research Study on Stress and CFS
The VideoHealth study is currently in its final months of national recruitment for participants and is seeking to enroll eligible patients and their partners. For more information please call 305-355-9200 and press option 5, or email us at [email protected].
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