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Research RoundTable May 2 2015 PDF Print E-mail

Register now for our spring event on May 2, 2015 at Newton Wellesley Hospital—Research Roundtable, a review of the exciting new research being funded by Solve ME/CFS Initiative (SMCI), one of several privately funded research organizations doing work in the area of ME/CFS.

Register now
You can register multiple participants
If you received an email invitation from SMCI, please Register here

Suzanne D. Vernon, PhD, Scientific Director of the Solve ME/CFS Initiative, will offer a review of the exciting research being conducted by some of the brightest investigators from the best medical institutions through the SMCI Research Institute Without Walls. She will also describe how you can get involved and be part of the solution to Solve ME/CFS through the SolveCFS BioBank™.

This event will also feature SMCI's President & CEO, Carol Head. Carol is a seasoned executive with 25 years' experience as a business owner, corporate executive, communicator, and problem solver, with experience in both the non-profit and profit sectors. Carol will answer questions and share her deep commitment to solving ME/CFS.

A portion of the program will be an open Q&A session where both Carol & Suzanne will be prepared to answer your questions about the research being conducted, the recent IOM report and SMCI’s briefing on Capitol Hill, and the current and future work SMCI is undertaking in order to bring us all closer to a world without ME/CFS.

You can submit questions in advance for either Suzanne or Carol. We will also take questions from the audience at the event.

Download the flyer

Please help us publicize this event! Post a flyer, announce on your FaceBook page, “tell-a-friend”!

Date:
Saturday, May 2, 2015, 1 – 3:30 p.m.
Registration begins at 12:30 p.m.

Where:
Newton Wellesley Hospital
Shipley Auditorium, Main Building, 2nd Floor
2014 Washington St, Newton, MA 02462

Directions:
Newton-Wellesley Hospital is located at 2014 Washington Street, Newton, Massachusetts, near the intersection of Routes 16 and 128 (I-95), one mile south of the Mass Pike (I-90).
Directions to Newton-Wellesley Hospital

Parking:
Valet parking is available for $9 ($4 with handicap placard) at the West/Main Entrance.
Indoor parking is in the parking garage at the East Entrance ($8 for 3-5 hours) and from this garage it is a longer walk to the auditorium.
There is a small open air lot near the West Entrance (same price as garage).
More information about parking

Public transportation:
Newton Wellesley Hospital is serviced by the "D Riverside" green line trolley (10 minute walk from Woodland Station) and The Ride.
More information about public transportation

The event is free and open to the public, but we request a $15 voluntary donation from non-members.

To save time, you can become a member or renew your membership now. Annual membership donation is $25 or whatever you can afford.

Register now
You can register multiple participants
If you received an email invitation from SMCI, please Register here

About Solve ME/CFS Initiative (SMCI)

Solve ME/CFS Initiative (SMCI)—formerly the CFIDS Association of Americahas been a leading organization focused on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) since it was founded in 1987. SMCI seeks to actively engage the ME/CFS community in research, works to accelerate the discovery of safe and effective treatments, and strives for an aggressive expansion of funding for research into treatments and a cure.

Does SMCI Receive any Federal Funding?

The Solve ME/CFS Initiative relies on the generous donations of patients and their loved ones and has not received government funding since 2010.

As an organization primarily focused on research, why is SMCI involved in activities on the federal level, like the CFS Advisory Committee, participating in P2P and IOM meetings?

SMCI is involved in advocacy efforts aimed at improving the research landscape for the early detection, objective diagnosis and effective treatment of ME/CFS. As part of this effort, SMCI works to validate the burden of illness imposed by ME/CFS in agencies where national policy is made and executed. While there is still much work to be done, it is encouraging that ME/CFS is now receiving much attention on a federal level and SMCI is involved to help maintain this positive momentum.

Why is SMCI positioned to improve the lives of ME/CFS patients?

SMCI has a deep and longstanding commitment to this disease. Despite a modest budget, it was the first to fund research into epidemiology, viral causes, immunology, neuroimaging, exercise physiology and the autonomic nervous system.

The Research Institute Without Walls is a means to fund the brightest researchers from the best institutions, without the cost of a bricks and mortar institute. Researchers agree to work in a collaborative manner.

The SolveCFS BioBank™ provides the means for patients to participate in research without leaving their homes, broadening the base of patients studied.

 
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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