Research Opportunities – update 1/16/2014
NJCFSA does not necessarily endorse any particular research study and is not responsible for conduct of the studies shared on this site.
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 email@example.com.
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: firstname.lastname@example.org.
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 email@example.com.
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 (firstname.lastname@example.org ) 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