NINDS director, Dr. Walter Koroshetz, sent the following response to #MEAction’s Oct. 21st letter calling on the NIH to take immediate actions to address the crisis of myalgic encephalomyelitis (ME). We analyze Dr. Koroshetz letter in blue text below to put his statements into context with the reality of what is happening with the ME crisis. JOIN
Additions and corrections Initially we stated that ICC requires three months before diagnosis; this was in error. ICC specifies that the disease can be diagnosed immediately. This has been corrected in the text and within the pdf comparing criteria. One reader pointed out a very useful misconception regarding different criteria for different purposes, which
The UK is set to go to the polls on 12 December 2019. #MEAction UK has prepared a guide ahead of the General Election with information on how to register for voting, different ways of voting (postal, proxy, etc), information about candidates and tips on raising awareness about myalgic encephalomyelitis (ME) with candidates. Make your
Our dear community, Let us take a moment to gather together and comfort one another. We are saddened to bring you news of a death in the community. Heather Colman-McGill has passed away. We send our heartfelt condolences to all of Heather’s loved ones. We know that many in our community had reached out to Heather and
Dane Cook is Professor of Kinesiology at the University of Wisconsin and Director of the March Center for Research in Exercise and Movement. He is also a member of the US. National Institute of Neurological Disorders and Stroke Council Working Group for ME/CFS Research Roster. How did you get involved with the area of ME research? My first
#MEAction is fighting to end the crisis of myalgic encephalomyelitis (ME) and create an equitable world for people with ME. We know that we must fight at every level to make this happen. #MEAction U.S. State Chapters are dug in and working to change the landscape of ME in their home states, and create a
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
Hi everyone! First of all I would like to express my heartfelt thanks to all who contributed to the success of the petition that asks for the EU to fund biomedical research on ME. So many people helped out by writing to their MEPs, translating documents, making phone calls, sharing the news and signing the
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
