New York City ME/CFS recruitment has begun

The Weill Cornell Medical Center is recruiting individuals between the ages of 21-65 whose doctor has found no cause for their severe fatigue. Please contact Xiangling Mao by phone at (212) 746-2632 or email at xim2004@med.cornell.edu for more information about the study and to determine if you are eligible.

Study participation includes a visit to the study physician’s office to fill out a questionnaire on physical and mental health, and a medical examination. If deemed eligible, a visit to Weill Cornell Medicine includes a questionnaire, magnetic brain imaging (MRI), blood draws, urine tests, a cardiopulmonary exercise test (CPET) and positron emission tomography scan (PET). Participants will be compensated for their time.

Please see the NYC -Recruitment-Flyer for additional details, and share it with others who are able to travel to the site if they are deemed eligible.

Screening starting for ME/CFS patients and controls

Now that the IRB protocols have been approved, the recruitment and screening of ME/CFS patients and low-active control subjects will begin. To learn more about the process and what determines your eligibility, and to print a flyer to help us recruit participants, please see ME/CFS Recruitment flyer for Ithaca and Los Angeles areas. The total time commitment to participate is about 5 hours, excluding travel to and from the testing site.

In brief, for healthy, inactive adults:

Who is eligible? Healthy, low-active adults between 18-70 years
Who is NOT eligible?
– Smoker, or stopped smoking less than 1 year ago
– Pregnant or breast feeding
– Diabetic
– Have a metabolic, cardiovascular and/or neuro-immune disease
– Have an orthopedic limitation that prohibits cycle exercise
What must you do?
– Have a phone call with us to determine eligibility for the study-about 10 minutes.
– If eligible, meet with your physician or our physician for clearance to participate in the study. During this meeting, urine and blood samples will be collected. You will not be charged any fee to be examined by our physician or for the blood and urine tests. Takes about 60 minutes.
– Complete questionnaires about your health/medical history and physical activity level. Takes about 60 minutes.
– Complete 2 exercise tests on a stationary cycle separated by 24 hours. Each test requires 8-12 minutes of exercise. A small amount of blood will be collected from your arm before and after each exercise test, and a single drop of blood from
your fingertip before and after each test. The total test session is about 60 minutes per test.
– You will wear a wrist watch device for 10 days before and 10 days after the exercise tests. It takes about 5 minutes to learn how to use this device.
Where is the testing being done? Ithaca College in Ithaca, NY or at the
Infectious Disease Medical Office in Torrance, CA.

For ME/CFS patients:

Who is eligible? Adults between 18-70 years diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and have not been diagnosed with depression.
Who is NOT eligible?
– Smoker, or stopped smoking less than 1 year ago
– Pregnant or breast feeding
– Diabetic
– Have an orthopedic limitation that prohibits cycle exercise
What must you do?
– Have a phone call with us to determine eligibility for the study-about 10 minutes.
– If eligible, meet with your physician or our physician for clearance to participate in the study. During this meeting, urine and blood samples will be collected. You will not be charged any fee to be examined by our physician or for the blood and urine tests. Takes about 60 minutes.
– Complete some questionnaires about your health/medical history and physical activity level. Takes about 60 minutes.
– Complete 2 exercise tests on a stationary cycle separated by 24 hours. Each test requires 8-12 minutes of exercise. You will also have a small amount of blood collected from your arm before and after each exercise test, and a single drop of blood from your fingertip before and after each test. The total test session is about 60 minutes per test.
– You will wear a wrist watch device for 10 days before and 10 days after the exercise tests. It takes about 5 minutes to learn how to use this device.
Where is the testing being done? Ithaca College in Ithaca, NY or at the
Infectious Disease Medical Office in Torrance, CA.

How can I sign up or get more info?

For Ithaca, NY area contact Betsy Keller at 607-274-7948 or MECFSstudy@ithaca.edu

For Torrance, CA contact Jared Stevens: 209-599-7194 or info@workwellfoundation.org

Invest in ME Research Conference

Maureen Hanson joined other researchers, physicians, patient groups and journalists from around the world at the 13th conference to advance ME/CFS research.  Here is a link to the full agenda.

InvestinME is producing a DVD of the presentations that can be purchased soon. An announcement will appear on the home page of their website.

America’s Hidden Health Crisis

logos supportTo celebrate ME/CFS International Awareness Day on May 12, clinical core Co-Director Betsy Keller joins Maureen Hanson and faculty from the University of Rochester and a patient advocate on an expert panel for AMERICA’S HIDDEN HEALTH CRISIS: What Clinicians and Others Need to Know about ME/CFS — as Documented in the Award-Winning Film Unrest and Shared Experience with New York Experts. MORE INFO

Continue reading “America’s Hidden Health Crisis”

Advancing the ME/CFS Research Agenda

The first Canadian Collaborative Team Conference held in Montréal, Quebec on May 3-5, 2018 brought together researchers, clinicians, patients and advocacy organizations to advance the ME/CFS research agenda from basic research to clinical practice. The conference was supported by the Canadian Institutes of Health Research and other stakeholders to address one of the most pressing medical mysteries of our time, with millions of individuals afflicted by this devastating illness.

The agenda was organized and driven by a quest for increased collaboration, with hopes to leverage the collective knowledge and unite pockets of innovation to transform the research landscape in a commitment to improve the health of patients suffering from ME/CFS in Canada and around the world, according to Continue reading “Advancing the ME/CFS Research Agenda”

Regional Lecture Series at Cayuga Medical Center on ME/CFS

In her talk entitled “Current Clinical Diagnostic Criteria and Knowledge of the Biological Basis of Myalgic Encephalomyelitis / Chronic Fatigue (ME/CFS) Syndrome”  shared recommendations to medical personnel, nurses and physicians, who received continuing education credit.

The participants, who attended in person and online, learned to utilize the clinical diagnostic criteria for ME/CFS recommended by the National Institute of Medicine. Dr. Hanson shed light on the current scientific information available about the causes and effects of the disease, and shared ongoing research to develop an objective diagnostic test and treatments for the disease. The audience engaged in lively discussion following the presentation.

A New Era of ME/CFS Research

The Solve ME/CFS Initiative gathered preeminent leaders from research centers, federal health agencies, ME/CFS clinics, and the biopharmaceutical industry in Washington DC in October 2017 to participate in SMCI’s Second Annual Discovery Forum. Fifteen presentations from Discovery Forum 2017  are now available to the public, including A New Era of ME/CFS Research with Dr. Maureen Hanson, Professor of Molecular Biology & Genetics at Cornell University.

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