Association responds to NIH's Request for Information

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Last Updated: 29 June 2016 29 June 2016

For years our ME/CFS patient community has felt ignored and abandoned by our federal government. While other diseases got attention and research funding, ME/CFS got pitifully little except a few dimes and lip service. All that seems to be changing. With the Request for Information (RFI) issued on May 24, 2016, the National Institutes of Health invited the ME/CFS patient community to participate in setting new directions in research into this disease. 

Our Association's Board of Directors signed on to two letters with suggestions to NIH, one with a comprehensive list of suggestions, and one specifically about clinical trials for Ampligen and rituximab. Both letters were prepared by members of the U.S. Action Working Group, in which our Association is a participant. Two earlier letters were also re-submitted to become part of the response to the RFI, one focused on research, and one with suggestions on getting input from the ME/CFS community. In addition, several members of our Board of Directors sent individual responses to the RFI. We hope that some of you did as well. Patients and advocates finally have a seat at the table. Now we can and must speak up.

A global day of protest for ME and CFS

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Last Updated: 26 May 2016 26 May 2016

“Millions Missing” global day of protest — Boston!

#MillionsMissing is dedicated to the millions of Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) patients missing from their careers, schools, social lives and families due to the debilitating symptoms of the disease. At the same time, millions of dollars are missing from research and clinical education funding that ME should be receiving. And millions of doctors are missing out on proper training to diagnose and help patients manage this illness.

On May 25th, 2016 #MEAction organized a global day of action for equality for ME. ME patients, advocates, caregivers, and allies joined together to protest the lack of government funding for research, clinical trials and medical/public education, which has left ME patients without relief for years and even decades.

In Boston, we gathered at the JFK Federal Building. We had signs and information to hand out, as well as a petition to collect signatures supporting more funding for ME/CFS. We also talked to people who stopped by and made new friends. 

We met separately with senior officials from the Boston branch of Health & Human Services to deliver our message and ask for their support. They were very well informed, understood our issues, and asked great questions. We see this as the beginning of an on-going relationship.