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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...
 
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...
 
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.

 
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