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.

Dr. Jo Solet Spring 2013 lecture video posted

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Last Updated: 19 October 2021 19 October 2021

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

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Last Updated: 06 January 2016 06 January 2016

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.

Millions Missing Massachusetts

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Last Updated: 05 October 2016 05 October 2016

September 27, 2016

There were two Millions Missing events in Massachusetts on Sept. 27, one in Boston and one in Northampton.

In Boston, a small but intrepid group chatted with passers-by and handed out lots of ME/CFS Fact Sheets.

In Northampton, the mayor came out to greet the demonstrators and pledged to issue a City Proclamation for ME Awareness.

Photos from Boston.

Photos from Northampton. We expect the mayor of Northampton to issue a City Proclamation for ME Awareness soon.

Photos from Northampton.

Fibromyalgia Research Study - 2016

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Last Updated: 07 October 2016 07 October 2016

This study is still recruiting patients as of October 2016.

This is a brain imaging study of pain responses. The study includes 5-14 assessment visits, lasting from 2-3 hours each. You may be eligible if you are 18-65 years old, are either generally healthy or have fibromyalgia, do not have a serious heart condition or certain other medical conditions, are not taking certain types of medications, and are not pregnant. There is no cost to you for any of the procedures and compensation up to $500.00 is provided.

For more details, see the study flyer.

The research takes place at the Brigham & Women’s Pain Management Center, 850 Boylston St, Chestnut Hill, and at the MGH Martinos Center
for Biomedical Imaging. For further information, please contact the study coordinator Olivia Franceschelli at 617-732-9718 or by email at ofranceschelli :at: partners.org.