Not. Enough. Those are the two words the National Institutes of Health (NIH) needs to hear from all of us about their recent plan to address the myalgic encephalomyelitis (ME) crisis. The NIH already knows what they need to do but they refuse to allocate enough resources to get it done. Dr. Koroshetz’s plan reiterates the same
A recent survey conducted by #MEAction UK found that UK specialist myalgic encephalomyelitis (ME) services are not fit for purpose. Areas investigated included: Management strategies Experience attending a clinic Cognitive behavioural therapy (CBT) Activity management [maxbutton id=”23″ url=”http://www.meaction.net/wp-content/uploads/2019/10/Your-experience-of-ME-services-Survey-report-by-MEAction-UK.pdf” text=”Read the survey report here” ] The survey was conducted to provide evidence to the National
The National Institute for Health and Care Excellence (NICE) are re-writing their guidelines on ME. As part of this they issued a call for evidence relating to three topics. #MEAction UK has now submitted our full response, collecting studies, surveys and data from multiple sources. [maxbutton id=”23″ url=”http://www.meaction.net/wp-content/uploads/2019/10/MEAction-submission-to-the-NICE-ME-CFS-call-for-evidence-consultation.pdf” text=”Read the full submission” ] #MEAction
Malcolm Bailey from the UK has bailed us out with his tech savvy skills on more than one occasion. We are so lucky to be able to rely on his dependable help for projects both small and large. As he describes it, ” As a healthy ally I’ve done everything from editing videos, ordering and distributing
Today Evelien Van Den Brink spoke powerfully and brilliantly to the Committee on Petitions in the European Parliament from her stretcher. Evelien laid out both an emotional and scientific appeal for biomedical funds for ME. She ended her appeal by saying “On behalf of all patients, I am asking you, please don’t look away. We
Colorado activist, Jim Lutey, has introduced a Rotary Club resolution to encourage research, education and funding for myalgic encephalomyelitis (ME!) [maxbutton id=”17″ url=”http://www.meaction.net/wp-content/uploads/2019/10/me-cfs-resolution-proposed-by-dist.-5440-3-13-2019-4-1.pdf” text=”Read the Resolution” ] The resolution’s purpose is to “leverage Rotary’s worldwide reputation and expertise on polio eradication to raise awareness on the need to educate the public and medical practitioners on
The revised Cochrane Review on ME/CFS was released today, October 2, 2019. We will share a more in-depth analysis shortly. However, we must immediately emphasize that #MEAction does not support graded exercise therapy due to serious risk of harms to people with ME, and that we are deeply concerned about the conclusions of this review.
Photo is of Rosie with her niece 10 years ago. Today we honor the life of Rosie Bayman who died from severe myalgic encephalomyelitis (ME) one year ago, today.* Rosie, from Warwickshire, England, had ME for five years before she died. Rosie wrote poetry in her head when she had to lie in darkness and in silence,
Listen to the article: #MEAction’s Values & Policy initiative has evolved out of the need to better clarify our values, tactics and positions so that we are more unified in our work as a large, diverse community. As a first step, we asked the community last November to take a survey to indicate what
The National Institute for Health and Care Excellence (NICE) are updating their guidelines on ME. As part of this they have published a call for evidence about 3 topics. #MEAction UK has put together the following survey to provide further evidence for the committee. [maxbutton id=”22″ url=”https://forms.gle/ZXEdp7W5nW4KBBcu8″ text=”Take the survey” ] The survey asks
