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Upcoming meetings - December 2014 PDF Print E-mail
Dec. 3rd and 4th, 2014, 12:30 p.m. – 5:00 p.m. ET, webinar  
Register for the webinar. The deadline for submitting comments, in person or written, is past.
 
December 9th and 10th, 2014; Bethesda, MD, and webcast
Register for the meeting (in person or webcast). 
 
Updated information on Medicare and MassHealth Programs PDF Print E-mail

With the present implementation of the federal Affordable Care Act (the new federal health care law), it is useful to review and update some of the eligibility requirements for medical benefits under Medicare and, in Massachusetts, for Medicaid and the Health Care Safety Net. Several of the eligibility cut-offs have been raised, so disabled patients may be newly eligible for health insurance benefits. Learn more.

 
Open Letter to Dr. Francis Collins PDF Print E-mail

The IACFS/ME has called for the NIH to set aside $7-$10 million annually for research on ME/CFS beginning in Fiscal Year 2015. Read the full text of the letter below.

International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

April 21, 2014

Open Letter to Dr. Francis Collins
Director, National Institutes of Health

Dear Dr. Collins:

On behalf of the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME), we thank you for your attention to ME/CFS, and encourage the NIH to continue and strengthen research on this debilitating illness.

Last month, the IACFS/ME held its biennial research and clinical conference, attracting some 400 professionals and patients to discuss advances in biomedical and behavioral research on the diagnosis, pathophysiology, genetics, and treatments for ME/CFS. The overwhelming consensus from the attendees is that the research efforts, largely supported by NIH, are paying off. We are tantalizingly close to gaining an understanding of potential biomarkers, genetic traits, brain dysfunction, cytokine abnormalities, autoimmune responses, neurological disorders, and treatments. However, we need a special "push" at this time to solve the mysteries of this illness.

Read more...
 
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 Associationhas posted 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...
 
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