NHS Citizen Gather Tool for Myalgic Encephalomyelitis
August 10, 2015
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NHS Citizen Gather is a way for the public to play a more active role in NHS England’s decision making.
Author: #MEAction
Get ME/CFS on HBO's "Last Night Tonight with John Oliver"
August 10, 2015
17 Comments
John Oliver, please talk about ME/CFS Funding! Please sign up/login to HBO’s “Last Week with John Oliver” page to “like” and comment on the topic idea of funding for ME/CFS: Ask John Oliver to talk about ME/CFS Funding! For those of you not familiar with “Last Week Tonight with John Oliver” – it has become
Should we oppose the Senate proposal to cut CDC funding to zero?
August 9, 2015
10 Comments
Jennie Spotila is an ME/CFS patient and advocate who has done extensive research on government funding for CFS. She recently discovered that the latest Senate committee report for CDC appropriations appears to recommend completely defunding CFS research. She points out that the cut is not a done deal as the House and Senate need to
Suffering the Silence Campaign for M.E.
August 9, 2015
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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
August 8, 2015
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Saturday, August 8th is Severe ME Day. It is a day of awareness raising for those suffering severe myalgic encephalomyelitis as well as a day of remembrance. August 8th was the birthday of Sophia Mirza, a 32 year-old woman who died of ME. Here are three ways you can observe the day: 1) Join the Twitter
Send a letter to Reinstate CDC Funding for ME/CFS
August 8, 2015
20 Comments
We at the Solve ME/CFS initiative are calling for the CDC to reinstate funding for ME/CFS and we need your help! Please act now! The $5.4 million in CDC funding for ME/CFS has been stricken from the Senate’s version of the 2016 federal budget. As you can see from the graphic below, ME/CFS was the only
OMF Severely Ill Patient Study Gets $500,000 donation
August 7, 2015
6 Comments
[pullquote align=”right” cite=”” link=”” color=”” class=”” size=””]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.”[/pullquote] The Open Medicine Foundation’s Severely Ill Patient Big Data study has gotten a HUGE boost with the help of an anonymous donor. This $500,000 donation will
Sign a petition to Reinstate Federal Research Funding for ME/CFS
August 7, 2015
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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:
Take the funding equality petition to the streets
August 6, 2015
1 Comment
The US funding equality petition has over 4,000 signatures. We still have a lot of work to do to get to our goal of 50,000 signatures nationwide. As we learned from the Dutch campaign, the only way to get to get large numbers is to take the petition into the streets. Help us increase signatures for
UK Equality Act: share your view
August 6, 2015
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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.