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CDC Funding Update: The Importance of Lobbying PDF Print E-mail

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.

 
New Medicare payment for chronic care management PDF Print E-mail

Beginning January 1, 2015, Medicare pays separately under the Medicare Physician Fee Schedule CPT code 99490, for non-face-to-face care coordination services furnished to Medicare beneficiaries with multiple chronic conditions. Learn more.

 
Links to recent U.S. government reports on ME/CFS PDF Print E-mail

Institute of Medicine report:
Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness, February 10, 2015
http://iom.nationalacademies.org/Reports/2015/ME-CFS.aspx

National Institutes Of Health, Pathways to Prevention (P2P) Workshop report:
Advancing the Research on Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome, December 9–10, 2014
https://prevention.nih.gov/programs-events/pathways-to-prevention/workshops/me-cfs

Agency for Healthcare Research and Quality, Research Review (“Evidence review”):
Diagnosis and Treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, December 9, 2014
http://www.effectivehealthcare.ahrq.gov/index.cfm/search-for-guides-reviews-and-reports/?pageaction=displayproduct&productid=2004

U.S. Food and Drug Administration, Patient-Focused Drug Development Initiative report:
Chronic Fatigue Syndrome and Myalgic Encephalomyelitis, September, 2013
http://www.fda.gov/downloads/ForIndustry/UserFees/PrescriptionDrugUserFee/UCM368806.pdf

National Institutes Of Health, State of Knowledge Workshop report:
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Research, April 7-8, 2011
http://orwh.od.nih.gov/research/me-cfs/pdfs/ORWH_SKW_Report.pdf

 
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...
 
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