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Important Social Security Disability Alert PDF Print E-mail

The Social Security Administration, on April 3, 2014, has issued a new Ruling, Evaluating Claims Involving Chronic Fatigue Syndrome. This Ruling is now the legal basis by which Social Security evaluates CFS/CFIDS/ME disability claims and reviews for both Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI). This is a very important development for disabled patients who are unable to work and need to obtain Social Security financial and medical benefits.

The new Ruling replaces the former CFS Ruling (SSR-99-2p) issued in 1999. The 2014 Ruling sets detailed standards for the medical evaluation of claims: including the documentation of specific symptoms, signs, laboratory findings and medical tests by a physician. The Ruling places importance on detailed, longitudinal medical notes in the patient's record - as well as the physician's evaluation of the severity of the illness and its limiting effects on the person's ability to work.

The new Ruling is an improvement on the 1999 Ruling and includes findings from both the 2003 Canadian Definition and the 2011 International Consensus Definition.

The Massachusetts CFIDS/ME & FM Association will shortly post a full evaluation and explanation of the new Ruling as a guide for patients.

To view the new Ruling:
http://www.ssa.gov/OP_Home/rulings/di/01/SSR2014-01-di-01.html

 
FDA's Fibromyalgia Public Meeting on Patient-Focused Drug Development PDF Print E-mail

We received this message from United States Food and Drug Administration regarding the Fibromyalgia Public Meeting on Patient-Focused Drug Development on Wednesday, March 26, 2014:

Dear fibromyalgia meeting attendees,

Thank you for attending the public meeting on fibromyalgia patient-focused drug development! FDA collected valuable information on fibromyalgia, the impact it has on patients’ lives, and patients’ perspectives on treatment options. We truly appreciate the courage, effort and time invested from everyone who was able to attend the meeting in person or on the web.

Read more...
 
Notice: 3rd (and public) meeting of the IOM Committee May 5, 2014 PDF Print E-mail

The following announcement has been provided by the Institute of Medicine ME/CFS Study team:

Save the Date
The third meeting of the Institute of Medicine committee on Diagnostic Criteria for ME/CFS will be held May 5-6, 2014 in Washington, D.C. On the afternoon of May 5, the committee will hold an information-gathering session that will be open to the public. Interested individuals will be able to attend the open session in person at the National Academies of Science building or virtually via webcast.

This open session is one of the many processes that the committee will use to gather information and assemble evidence that it will examine and discuss in the course of making its findings, conclusions, and recommendations. The objectives for the committee during this open session are to learn more about the cognitive, sleep, and diagnostic issues related to ME/CFS; and to seek input from patients and caregivers regarding their interaction with health care professionals.

If you would like to provide written comments to the committee for this meeting, please focus your comments on responses to the following questions:

  1. In your opinion, what are the most important issues that healthcare providers should be educated about when it comes to diagnosis of ME/CFS?
  2. What are your thoughts on the current terminology used to describe this disease: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome? If you could suggest new terminology, what would you suggest and why?

Please use the email This e-mail address is being protected from spambots. You need JavaScript enabled to view it to submit your written comments. Written comments received by April 23, 2014, will be distributed to the committee before the meeting on May 5. After April 23, written comments should be sent to the project email address ( This e-mail address is being protected from spambots. You need JavaScript enabled to view it ). All comments will be considered by the committee, but those received after the April 23 deadline may be distributed after the meeting is adjourned. As with any information sent to inform the committee, all written comments will be placed in a Public Access File in compliance with Section 15 of the Federal Advisory Committee Act.

Registration for the open meeting will open shortly and more information, including a tentative agenda, will be posted on the IOM ME/CFS project webpage as it is available.

  

 
Dr. Anthony Komaroff Fall 2013 Lecture Video PDF Print E-mail

The Massachusetts CFIDS/ME & FM Association was pleased and honored to welcome back Anthony Komaroff, M.D., Simcox-Clifford-Higby Professor of Medicine at Harvard Medical School, Clinician and Researcher, as the keynote speaker at our Fall 2013 Educational Lecture. The title of Dr. Komaroff's talk was "CFS Research: Recent Progress and Challenges." The lecture took place on Saturday, November 2, 2013 at the Morse Institute Library in Natick, MA.

A video of this 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) Select the lecture or the Questions & Answers segment below:

Dr. Komaroff's 2013 lecture "CFS Research: Recent Progress and Challenges" (56 minutes)

Dr. Komaroff's 2013 lecture Questions & Answers (37 minutes)


Some of the highlights from Dr. Komaroff's talk included advancements in gene technology and other methods which have improved the ability to research CFS and other illnesses. Dr. Komaroff explained that every gene can now be identified, but even more important, researchers can determine whether genes are turned on or off and detect changes or abnormalities in this process—these differences are what really matter because they may provide the link to the development of disease. He also reviewed several new treatments that have been studied scientifically and have shown encouraging results. Lastly, Dr. Komaroff emphasized the growing interest in CFS by scientists around the world.

 
Dr. Jo Solet Spring 2013 lecture video posted PDF Print E-mail

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. 

 

 


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