NJCFSA does not necessarily endorse any particular research study and is not responsible for conduct of the studies shared on this site.
Our recent paper “Mortality in patients with ME and CFS” found patients are significantly at risk for earlier all-cause mortality with the top three causes of death being suicide, cardiovascular problems, and cancer. This is an alarming issue and we would like your help understanding what factors may be contributing to this earlier mortality.
In addition to developing cancer and cardiovascular problems, some individuals with ME and CFS exhibit symptoms similar to demoralization and depression due to the major symptoms of their primary physical illness and the associated limitations and stigma experienced.
We would like your help for our research study in understanding what external factors may be influencing the development and expression of demoralization and depression-like symptoms.
We would like to invite all individuals 18 or older with ME and CFS to complete our questionnaire (link below) assessing several factors including access to and quality of healthcare, illness severity, financial impact, and social interactions with both supportive and non-supportive people.
We hope the results of this study will help us better understand what you experience with your illness and the types of barriers to receiving quality care and support. This questionnaire will take approximately 90 minutes to complete.
You can access the survey at the following link: An Assessment of Demoralization and Depression-like Symptoms Experienced by Individuals with ME and CFS
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Dr. Nancy Klimas
Dr. Nancy Klimas’ ME/CFS Gene Study at Nova Southeast University is still seeking patient and healthy volunteers. If you are interested, you can send a message to Helpdesk@njmecfsa.org and we will forward it to the study. More information can be found at https://sharkmedia.nova.edu/m…/ME+CFS+Genes+Study/1_06vh90p0. This is a chance for both patients and healthy volunteers to participate.
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Dr. Nancy Klimas is embarking on a Gene Study of ME/CFS. Please see the following link for information about the study.
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Quality of ME/CFS Medical Care Survey
THE OMF END ME/CFS PROJECT (posted 10-12-2014)
Open Medicine Foundation (OMF) and top experts under the guidance of world-renowned geneticist Ronald W. Davis, PhD are launching a bold new project of collaborative research. The ultimate goal is to unlock the mystery of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). OMF’s new END ME/CFS Project will create a large consortium of scientists and clinicians with expertise in ME/CFS and top-notch experts in relevant scientific fields and will also include world-class scientists not currently working on this disease.
It will be modeled after two former success stories:
– The Human Genome Project, launched by James D. Watson, PhD (who has joined our Scientific Advisory Board).
– The Consortium on Inflammation and Host Response to Injury in Humans (www.gluegrant.org), led by Ronald G. Tompkins, MD, ScD (who has also joined).
The project will find grants and funding, and determine the most effective course of research. The goal is to understand the disease at a molecular level, finding diagnostic markers, effective treatments, cure and prevention. Basic research will be conducted in the best scientific laboratories. ME/CFS clinicians will provide their intimate knowledge of the disease and conduct any clinical trials. We will work until answers are found.
The Open Medicine Foundation is honored to announce that Dr. Ronald W. Davis will join the OMF as its new ME/CFS Scientific Advisory Board Director. Dr. Davis is Professor of Biochemistry and Genetics at Stanford University and Director of the Stanford Genome Technology Center. The originator of numerous innovations in genetics technology, molecular instrumentation, Dr. Davis is known as one of the “fathers of the modern era of human genetics”.
Dr. Davis was a key scientist in the Human Genome Project, perhaps the most groundbreaking project in medicine in the last 15 years. His pioneering and collaborative work has gained Dr. Davis the respect of scientists and clinicians worldwide.
Other remarkable scientists that will join Dr. Davis on the Scientific Advisory Board include (see bios below):
Mario Capecchi, PhD – Nobel Prize Laureate – currently working on molecular genetic causes underlying human disorders involving the immune system and the brain
Mark M. Davis, PhD – renowned immunologist
Craig Heller, PhD – sports fatigue expert with broad knowledge of physiology
Andreas M. Kogelnik, MD, PhD prominent ME/CFS clinician-scientist
Baldomero M. Olivera, PhD – innovative neurobiologist
Ronald G. Tompkins, MD, ScD – prestigious trauma physician
James D. Watson, PhD – Nobel Prize Laureate for his determination of the structure of DNA.
A few additional top scientists are yet to be recruited. Together, they will recruit a large consortium of leading researchers and clinicians including many already involved in ME/CFS.
This collaboration will bring in expertise in a wide range of body systems and a diversity of disciplines including medicine, genetics, biochemistry, immunology, infectious disease, neurophysiology, bioinformatics, and statistics.
For additional information about this campaign to End ME/CFS go to www.openmedicinefoundation.org
The Synergy Trial
K-Pax Pharmaceuticals – recruiting until August 1, 2014.
See details of the trial, testing sites and contact information below. We are simply passing on this information and are not involved in this particular trial. All contact will be with K-Pax. If you’re looking to take part in testing an innovative new ME/CFS treatment, one that has already demonstrated positive preliminary results according to K-Pax, then please take a close look at the Youtube below regarding “The Synergy Trial” – a combination of low dose methylphenidate (generic ritalin) plus a highly potent combination of mitochondrial support nutrients. According to K-Pax, when this combination of treatments (low dose methylphenidate plus the ME/CFS Nutrient Formula) was recently provided to ME/CFS patients as innovative therapy, many patients reported rapid and sustained reductions in fatigue as well as improvement in concentration (brain fog). The Synergy Trial represents the next phase of study for this intervention. It is believed that the mitochondrial nutrients help the methylphenidate work better and be better tolerated.
The Synergy Trial has already enrolled 90 patients. 40 additional patients are now needed by August 1st!
The 4 sites are located at the following clinics:
Palo Alto, CA (Jose Montoya, MD)
Salt Lake City (Lucinda Bateman, MD)
New York City (Sue Levine, MD)
Ft. Lauderdale (Nancy Klimas, MD)
This is a 3-month trial and there are a total of 4 in-person visits plus 2-3 phone calls. Remuneration is provided at $50 per visit (after the screening visit) to cover expenses. A free 3-month supply of the ME/CFS Nutrient Formula will also be provided to all who complete the trial. K-PAX Pharmaceuticals, the study’s sponsor, has recently posted a webcast on YouTube that covers all the details of the study including it’s mechanism of action and the early data that has been collected. Click here to view the webcast: . https://www.youtube.com/watch?v=Q_yFlocDRoQ&feature=youtube.
For more information about the K-Pax trial you may call “The Hope Line” 1-855-318-HOPE (4673); K-PAX Research Coordinator, D.firstname.lastname@example.org
Stony Brook University – Fred Friedberg
Study of Fibromyalgia
If you have fibromyalgia, you’re invited to participate in a research study sponsored by Stony Brook University to learn pain self-help skills. No in-person visits. Participants will be paid up to $160.
For further information call: Elaine Beun, RN at (855) 221-4884 - Email: email@example.com
Lucinda Bateman, MD
We need your help.
This is an exciting time for those with chronic fatigue syndrome and fibromyalgia. Never before has there been so much understanding and recognition of these illnesses. My research department is on the cutting-edge of this growing body of knowledge. Research is the only way to find answers and effective treatments and we can’t do studies without you!
We currently have many studies and are desperately needing adolescents and adults to participate. Not only are we conducting drug trials, but we also have a device study using non-invasive cortical stimulation for fibromyalgia pain. All of these trials are free to you and some offer compensation.
We would really like to hear from you. Please contact us for more information and to see if you are eligible by either calling 801.532.8311 or emailing firstname.lastname@example.org.
Dr. Bateman & The Research Team (Ali, Jen, & Veronica)
Leonard Jason, PhD
NJCFSA Trustee Billie Moore has been working with Lenny Jason and his assistant, Abby Brown, since last year when she (Billie) suggested to Lenny that he do another mortality survey, one that would gather much more information and do it very systematically. Billie and her husband helped design the study, both having had survey experience. All who worked on it believe that much more documentation about causes of death in our ME/CFS community is sorely needed as we all know people who have died from the effects of this disease, yet ME/CFS (or ME or CFS) is not believed to be fatal and is highly unlikely to ever show up on a death certificate as the cause of death.
What is needed from all of you is to distribute this survey along with the following recruitment letter to your support groups, through your blogs, to anyone you know who has close experience with a person who died for any reason after having ME/CFS. The survey is quite detailed and asks questions about the deceased and of the respondent.
Here’s the problem: finding respondents who know the person who died, such as spouses, parents, children, caregivers. Many might not be in touch with the ME/CFS community any longer. So cast your nets, please! Try to seek out anyone whom you know or used to know who had a close relative or loved one die after having had ME/CFS.
VERY IMPORTANT – the recruitment letter below must go with the survey! DePaul University requires this. Just copy it into your email or blog.
Peter C Rowe, MD
The study has a limited number of spots remaining. See study details below.
Now Recruiting Additional Participants and Bedbound and Severely Ill!
Richard Podell, MD
Center For Disease Control’s Research on CFS:
For the last two years, 50 of our patients have been part of a study on CFS sponsored by the Center for Disease Control (CDC). While disagreeing on some points, I have been very favorably impressed by Elizabeth Unger, MD, Ph.D. and her capable staff. They are genuinely dedicated to better understanding CFS as a severe and physical illness.
For year three (2014), a main project will be to do a metabolic exercise stress test on about 300 patients nation-wide. This study has two goals; to understand the biochemistry of what happens when a person with CFS exercises; and to document the effects of exercise on cognitive abilities. Patients will be asked to do short cognitive tests before, immediately after and for 24 hours after the exercise.
The physician experts group recommended that we do two consecutive days of stress testing to document the decrease in physical abilities that occurs as the result of exercise. We think this is very important, as it would document the validity of our patients’ reports that modest exercise causes a prolonged flare-up of symptoms. Unfortunately, the budget for 2014 had been set many months before. Dr. Unger and her group had no control over this. Hopefully, our lobbying this year will impress CDC as they plan for 2015.
CDC is allowing us to recruit a number of additional patients to the 50 we are currently studying at our site. New patients would be asked to complete a rather large number of standardized questionnaires that measure pain, sleep, fatigue, psychology. These can be done over a week. They would also do the metabolic stress test/cognitive testing—probably early this spring. (CDC plans to fly in an experienced metabolic stress testing team for a week.)
If you or someone you know with ME/CFS, might want to participate, please contact us by email: email@example.com.
Richard Podell, M.D.
Addendum – posted 11/26/13
The CDC has also asked us to try to help identify persons with CFS who are basically homebound i.e. can only leave their homes for short intervals, and as a result don’t obtain basic medical care. If we could locate such patients in New Jersey , I expect we could probably find a way to either transport them to our office or send a clinician out to their home to help evaluate them. Especially important would be to rule out conditions other than CFS, and to try to link these people to some kind of services.
If any members are largely housebound due to CFS or know of persons who are, I’d very much appreciate hearing from you. at firstname.lastname@example.org.
Richard Podell, MD
Now Recruiting Participants – Bedbound and Severely Ill!
Benjamin Natelson, MD
Details of all our studies can be found on our website –> www.painandfatigue.com
There are two ongoing studies.
1) Sponsored by CDC who has asked us to reach out to find severely affected, bedridden CFS patients to complete our questionnaires and undergo physical exam. CDC wants to study these patients because little is known about them due to their marked disability. Based on their location, the Center nurse practitioner would try to come to their homes. If the patient were able to come to our offices on Union Square in Manhattan, that’d be even better. Filling out the questionnaires would take several hours, but they don’t all have to be completed on the initial visit — just within a week’s time.
2) Funded by NIH and requires patients to come to our Center and to Cornell’s Imaging Center down the street from us. This study looks at brain function and chemistry and so requires patients to come off all brain-active medications for at least a week before study. We would very much like patients to allow us to do a spinal tap to collect spinal fluid, the material closest to the brain which we think is the problem organ in CFS. But this is not an absolute necessity. These patients will be offered one month of treatment with a neutriceutical [N-Acety Cysteine] which we hypothesize will improve CFS symptoms. Patients volunteering for this study are asked to come back to the city for repeat testing after the treatment.
Patients interested in either study should go to the www.painandfatigue.com website to download, complete and then send in the HEALTH SCREEN FORM. After we have received it and reviewed it, we will contact each interested person about next steps.
The only way to deal with CFS is to understand it better. This can’t happen without the active participation of CFS patients. Again our thanks for helping this to happen.
Benjamin H. Natelson, MD Director Pain & Fatigue Study Center, Beth Israel Medical Center Professor of Neurology, Albert Einstein College of Medicine
Charles Lapp, MD
Seeking Bedbound and Severely-ill
From: Hunter-Hopkins ME-Letter Sep 2013 Dr. Charles Lapp:
We are seeking to learn more about PWCs who are severely ill and bedfast. Such individuals are unable to consult with physicians and may not be getting adequate healthcare. Both the Centers for Disease Control and the International Association for CFS/ME and FM (IACFS/FM) are considering programs to identify and assist such patients. If you know such an individual, please email Dr. Lapp (email@example.com ) with the patient’s initials (only) and city of residence. If the person is willing to be contacted, please provide a telephone number and/or email address. Thank you for your help!
Link to multiple postings by CFIDS