To CDC: Remove GET and CBT from website!

Eleven patient organizations, including Massachusetts CFIDS/ME & FM Association, and 52 individual advocates have called for CDC to remove recommendations for GET (Graded Exercise Therapy) and CBT (Cognitive Behavioral Therapy) from the CDC's ME/CFS website.

Read more.

Read the community letter.

 

Association responds to NIH's Request for Information

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

 

Millions Missing Boston

“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.

Dr. Jo Solet Spring 2013 lecture video posted

Jo M. Solet, MS, EdM, PhD, OTR/L was the keynote speaker at the Massachusetts CFIDS/ME & FM Association's Spring Lecture held on April 6, 2013. Dr. Solet's talk was on "The Science of Sleep." The event was co-sponsored by the Massachusetts Department of Public Health and held at the Hinton State Laboratory Institute Auditorium in Jamaica Plain, MA.  

A video of the lecture is now available at YouTube.

YouTube links (YouTube versions can be only be accessed from this site or from the direct links; the videos are not searchable on YouTube):

Dr. Solet's presentation on "The Science of Sleep"

Read a written summary of her talk, The Science of Sleep. Also available are Dr. Solet's list of Tips for Sleep and Fatigue Management in CFIDS/ME & FM.  

Dr. Solet is a Clinical Instructor at Harvard Medical School, a member of the Harvard Medical School Division of Sleep Medicine, and the Department of Medicine at Cambridge Health Alliance. She is the co-author of sleep disruption studies and is clinically trained in occupational therapy and behavioral medicine. Dr. Solet brought a unique perspective on sleep and how it impacts our health. 

Dr. Solet introduced us to the science of sleep and help us understand how sleep is structured and how it changes throughout our life cycle. She explained adverse effects of poor sleep, sleep debt and describe some ways sleep may be enhanced. She highlighted research findings on sleep abnormalities uncovered in CFIDS/ME and FM. Dr. Solet's lecture helped to uncover the many internal physiological changes and activities that happen during sleep and how it becomes disrupted. 

CDC Funding Update: The Importance of Lobbying

A month ago, patient advocate Jennifer Spotila discovered that the U.S. Senate was proposing to zero-out the ME/CFS budget at the Centers for Disease Control and Prevention. Read what has happened since.