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Research Studies Recruiting CFS Patients
Biomedical research holds the greatest hope for unraveling the mysteries of chronic fatigue syndrome (CFS). Many CFS patients have inquired about opportunities to participate in research studies. The CFIDS Association of America does not recommend or endorse participation in any specific medical research study and assumes no responsibility for the safe or ethical conduct of the studies listed below.
The Association provides this information as a service to persons with CFS and related disorders who are interested in participating in medical research, and for researchers who are seeking subjects for their studies.
Patients: Please also see databases and other listings below of clinical trials and resources for those considering enrolling in a study.
Researchers: to inquire about listing your study on this page, please write to research@cfids.org. Please let us know when your studies are no longer recruiting subjects so we can keep this page current.
Studies currently recruiting patients with CFS or related conditions
Pain & Fatigue Study Center
NEW FEDERALLY FUNDED GRANT TO BETTER CHARACTERIZE CFS: Chronic Fatigue Syndrome is diagnosed based on a patient's symptoms, and different definitions for the illness exist around the world. The Centers for Disease Control (CDC) is researching whether a definition of CFS can be developed that suits most types of patients. To do this, patients will have a diagnostic evaluation, complete questionnaires, and answer questions about family history of illness and the effect of the illness on function, mood, and other abilities. The Pain & Fatigue Study Center at Beth Israel Medical Center will be one of four centers working on this project, headed on-site by Dr. Benjamin Natelson.
We hope to explore how well the current process for diagnosing CFS works across our nation, and patients can participate without changing their current treatment. There will no costs for participating, and a modest stipend will be given.
NEW FEDERALLY FUNDED GRANT: A Brain Problem is the Cause of CFS for some Patients. For the past 12 years, Dr. Natelson and his colleague have been doing one study at a time looking at the brain as the cause of CFS. Very importantly, the group has found that some CFS patients have abnormal spinal fluid, problems doing neuro-psychological tests of cognitive function, and abnormal brain imaging studies. Dr. Natelson's group has been approved to do all these studies on the same patients. If Dr. Natelson and his colleagues find that some patients have abnormalities on all of these brain-related dimensions, that will mean that a brain problem is the cause of CFS for those patients. That will made a giant step forward in understanding the cause of CFS – at least for these patients. Finding the cause is step #1 toward developing new treatments. To allow us to move ahead, we are looking for CFS patients who either are on no brain-active medicines or are willing to come off these medicines with guidance from their doctor for a 2 week period. The research consists of neuropsychological testing, brain imaging at the Cornell Imaging Center on 71st St., and lumbar puncture.
There are two ways to become involved. One is to call the research office at 212-844-6665. The other is to visit our website at www.painandfatigue.com to download, complete and send in the health screen form.
New York Medical College
Understanding Brain Fog in Chronic Fatigue Syndrome
Principle Investigator: Marvin S. Medow, PhD
We are seeking participants who have Chronic Fatigue Syndrome (CFS) and healthy volunteers, ages 15-29 years of age to participate in a New York Medical College IRB-approved (L-10,523), funded research protocol. People with CFS have many different symptoms, among them are disabling fatigue and the inability to concentrate; so-called brain fog.
CFS subjects often have additional symptoms of Orthostatic Intolerance (OI) described as dizziness or light-headedness when they become upright. Patients with both CFS and OI may have decreased amounts of blood available to circulate to their head. The purpose of these studies therefore is to investigate changes in brain blood flow that may be the cause of the mental clouding and memory loss that some CFS patients experience, and to determine whether they are related to rapid changes in posture.
We therefore want to study patients diagnosed with CFS and evaluate whether or not they have OI. We will compare those results to healthy volunteers.
When you come for your testing, we will perform a type of tilt testing and other simple noninvasive tests to determine whether you have OI or not. If you choose to participate, we will ask you to come back 3 more times during which we will perform N-back testing, a measure of working memory, attention, concentration, and information processing. You will be reimbursed $150 per day for this testing, which may take place over several days.
Further details of the research and representative consent forms can be found on our web-site, syncope.org
If interested, please reply to:
Courtney Terilli, Research Coordinator
The Center for Hypotension
Department of Pediatrics
19 Bradhurst Avenue, Suite 1600 South
Hawthorne, New York 10532
courtney_terilli@nymc.edu; Telephone 914-593-8888
or
Marvin S. Medow, Ph.D., Principal Investigator
marvin_medow@nymc.edu, telephone 914-593-8888
New York Medical College
Local Vasoconstriction in Postural Tachycardia Syndrome (POTS)
Principle Investigator: Julian Stewart, MD, PhD
Co Investigator: Marvin S. Medow, PhD
We are seeking people with Postural Tachycardia Syndrome (POTS) ages 14-29 years of age to participate in a New York Medical College IRB-approved (L-7388-206A2), funded research protocol. The purpose is to investigate the ability to regulate local blood flow in patients with certain circulatory abnormalities. Some people can have symptoms such as dizziness, headache, fatigue, nausea, and palpitations when they are kept upright. This is called “orthostatic intolerance.” When upright, some people may also develop high heart rates along with these symptoms. When this occurs, it is called postural tachycardia syndrome (POTS).
When you come for your testing, we will perform a type of tilt testing and other simple noninvasive tests. If you choose to participate, we will use a technique called intradermal microdialysis in which several tiny tubes are placed in the uppermost layer of the skin, while we simultaneously measure blood flow. Two 3mm biopsy samples will be obtained from the skin of your calf. In addition, we will also be administering Vitamin C through an IV placed in your arm and combine this with tilt-table testing, along with microneurography (MSNA). Muscle Sympathetic Nerve Activity (MSNA) involves an acupuncture like needle placed in a nerve behind your knee. Testing will take place over 4 days and you will be reimbursed $150 per day.
Further details of the research and representative consent forms can be found on our web-site, www.syncope.org
If interested, please reply to:
Courtney Terilli, Research Coordinator
The Center for Hypotension
Department of Pediatrics
19 Bradhurst Avenue, Suite 1600 South
Hawthorne, New York 10532
Telephone: 914-593-8888
Email: courtney_terilli@nymc.edu
Research Study: Use of Comprehensive Molecular Profiling With Network
& Control Theory To Better Understand Chronic Fatigue Syndrome (CFS) & Model Therapeutic Strategies
Principal Investigator: Nancy Klimas, M.D
WHAT IS THE PURPOSE OF THIS STUDY?
The purpose of this study is to use new ways in analyzing genetic testing to help us understand and identify causes of Chronic Fatigue Syndrome.
WHO CAN PARTICIPATE?
35 Healthy Sedentary Controls
35 (men or women) with Chronic Fatigue, between the ages of 30-55 with 4 out
the 8 following symptoms: Non-restorative sleep, cognitive complaints,
myalgia, arthralgia, sore throat, tender lymph nodes, exercise induced relapse
or headache of new and different type.
WHAT DOES PARTICIPATION IN THE STUDY INVOLVE?
The Study involves 3 visits to the Miami VA Hospital:
The 1st visit last 4 hours, 2nd visit lasts 8 hours and the 3rd visit
lasts 30 minutes.
If you are interested in participating in the study please contact the study team at (305) 575-7000 ext. 6706 or 4942.
You will be compensated for your time.
University of Cincinnati Physicians: Fibromyalgia Medication Research Study
What
This is a research study to look at how safe and effective a once-a-day pill is for fibromyalgia. This form of the medication is not approved by the United States Food and Drug Administration (FDA), but a twice daily pill form is FDA-approved for use by adults with fibromyalgia.
Who
Adults 18 and older who have been diagnosed with fibromyalgia or who have chronic muscle aches or pains may be eligible to participate.
Compensation
Participants will be compensated for time and travel.
Details
For more information, contact Alicia Heller at alicia.heller@uc.edu or 513-475-8115.
University of Cincinnati Physicians: Fibromyalgia Medication Research Study
What
This is a research study to look at how safe and effective an investigational medication is for teens who have symptoms of fibromyalgia.
Who
Teens 13 to 17 years old who have been diagnosed with fibromyalgia or who have had muscle aches or pains for at least three months may be eligible to participate.
Compensation
Participants will be compensated for time and travel.
Details
For more information, contact Kerri Earles at kerri.earles@uc.edu or 513-475-8113.
The Good Day Bad Day Study
This study is investigating the relationship between immune function and symptom severity. The study involves both those with a diagnosis of chronic fatigue syndrome as well as healthy individuals.
Patients will be asked to come into the university for a total of four visits. During the first visit, you will be asked to fill out questionnaires and receive a complete physical examination. Another assessment will take place when you feel relatively well (Good Day) and another on a day when your symptoms are severe (Bad Day). Then you will be asked to come in for an 18 month follow up. Healthy individuals will also come in for a total of four visits.
The study is also recruiting healthy controls older than 18yrs to come in twice and receive a complete blood work of the immune system as well as $20 dollars.
All participants will be paid $20 per visit to cover travel costs.
The study will be conducted at the offices of Dr. Nancy Klimas, 1120 NW 14th Street, Suite 712, Miami, FL 33136.
To register or request additional information please contact: Phones: 305 243-1568 or 305 243-6218. Email: lgarcia2@med.miami.edu or Zbarnes@med.miami.edu.
The VideoHealth Study
This research project is designed to help individuals with Chronic Fatigue Syndrome (CFS) and their partners understand and manage this debilitating condition. Participants will be provided with information about the nature and effects of stress reactions, how to cope and manage stress, and how to take better care of themselves via an innovative home-based video program. Couples will be compensated $100 ($50 each) for each completed assessment.
The VideoHealth Study is funded by NIH in collaboration with the UM Behavioral Medicine Research Center and the Center on Aging.
To participate, or for more information please call 305-355-9200 and press option 3 or e-mail us at CFSVideoHealth@med.miami.edu.
Other listings for Clinical Trials
- ClinicalTrials.gov is the National Institutes of Health's database with information on more than 4,000 federal and private medical studies involving patients at more than 47,000 locations nationwide. Center Watch Clinical Trials Listing Service lists more than 41,000 industry- and government-sponsored clinical trials, as well as new drug therapies recently approved by the FDA.
- Current Controlled Trials is a multi-national effort to provide information about thousands of research studies worldwide.
Resources For Those Considering Enrolling in a Study
Here are some resources to help you evaluate whether participating in a research study is right for you. Please consult with your personal physician about such matters for further information.
Last updated 2/14/2013
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