ACTION ALERT: Tell the NIH to accelerate research for ME. Sign the petition!



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Diagnostic Criteria: Researchers and Clinicians Survey Results

Last week, we presented information about the diagnostic criteria, exploring their similarities and differences. Click here to read that article. This week, we’re reporting on a survey we sent to ME-literate researchers and clinicians. We contacted clinicians who treat or have treated pwME as their main patient population, and researchers ...

A Trial of ME – Elizabeth’s Story

This is me, my story, I am one of the millions missing. I may not look ill to you, but if you see me, it will be because I am having a ‘good’ day because I am well enough to be able to get dressed and leave the house. The ...

NIH: Dr. Koroshetz Declines to Take Urgent Action for ME. Read His Response and Take Action!

NINDS Institute director, Dr. Walter Koroshetz, has made it clear that neither he nor the National Institutes of Health (NIH) are ready to take the immediate actions needed to address the crisis of myalgic encephalomyelitis (ME). In response to #MEAction’s recent letter calling on the NIH to ACTION now for

Read Dr. Koroshetz Response to Our Letter Calling for Action. We Analyze His Claims.

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

Demystifying the Diagnostic Criteria for ME and Related disease

Introduction (first section, not linked) Misconceptions regarding diagnostic criteria The Oxford Criteria The Ramsay Definition The Fukuda Criteria The Canadian Consensus Criteria The International Consensus Criteria The National Academy of Medicine Criteria/IOM Criteria Criteria Comparisons Criteria Comparison Chart Additions and corrections Initially we stated that ICC requires three months before

UK General Election Guide Now Available

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

We Remember and Honor the Life of Heather Colman-McGill 

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

Meet the Scientist: Dr. Dane Cook

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

#MEAction U.S. State Chapters have a BIG Vision for ME! Find Out What is Happening in Your State.

#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

NOT ENOUGH! Sign the Petition Calling on the NIH to Take REAL Action for ME!

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.

Evelien’s Journey to Meet the EU Parliament

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

ME Services in the UK Not Fit for Purpose

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 The survey was conducted to provide evidence to the National Institute for Health and Care
NICE Call for Evidence response #MEAction UK

NICE Called for Evidence: Read #MEAction UK’s Response

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. #MEAction UK also wrote, circulated

Degrees of Distance

Many of us (housebound/bedbound) worry about dear ones who are sick, infirm, or struggling, esp. if we live afar. We feel not being there when we need to be, want to be, no matter what the circumstances, as failed fidelity, incurring a debt of love.