The CFIDS Association is pleased to share the following announcements from New York City region researchers who are seeking subjects for registered, IRB-approved studies of chronic fatigue syndrome (CFS). General information on three studies and contact information is provided below. Please contact the investigators directly if you would like to participate or need more details.
STUDY 1: UNDERSTANDING BRAIN FOG IN CFS: We are seeking participants who have CFS and healthy volunteers, ages 15-29 years of age to participate in a New York Medical College IRB-approved, funded research protocol. People with CFS have many different symptoms, among them are disabling fatigue and the inability to concentrate; so-called “brain fog.”
Marvin Medow, Ph.D.
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 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 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, http://www.syncope.org/.
If interested, please reply to:
- Courtney Terilli, Research Coordinator
courtney_terilli@nymc.edu;
914-593-8888 - Marvin S. Medow, Ph.D., Principal Investigator
marvin_medow@nymc.edu,
914-593-8888(Note: This study is funded by the CFIDS Association of America through its Research Institute Without Walls)
STUDY2: BETTER CHARACTERIZING CFS: CFS is diagnosed based on a patient’s symptoms, and different definitions for the illness exist around the world. The U.S. 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.
Benjamin H. Natelson, M.D.
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.
There are two ways to become involved:
- Call the Center’s research office at 212-844-6665; or
- Visit www.painandfatigue.com to download the Center’s health screen form. Once completed, fax it to the number provided or mail it to the address listed.
(Note: More information about this study is available at the CDC’s website: http://www.cdc.gov/cfs/programs/clinical-assessment/index.html)
STUDY 3: A BRAIN PROBLEM IS THE CAUSE OF CFS FOR SOME PATIENTS: For the past 12 years, Dr. Benjamin Natelson and his colleagues 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 make a giant step forward in understanding the cause of CFS-at least for these patients. Finding the cause is step number one 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 two-week period. The research consists of neuropsychological testing, brain imaging at the Cornell Imaging Center on 71st St. in NYC and lumbar puncture.
There are two ways to become involved:
- Call the Center’s research office at 212-844-6665; or
- Visit www.painandfatigue.com to download the Center’s health screen form. Once completed, fax it to the number provided or mail it to the address listed.
(Note: Read more about this study in our Research1st post titled, “Brainiacs: Natelson and Shungu Take On the CFS Brain” at http://www.research1st.com/2011/10/07/brainiacs/)
The CFIDS Association of America does not recommend or endorse any specific medical research study and assumes no responsibility for the safe or ethical conduct of the studies listed. Participants in the research will be asked to give informed consent before enrolling and associated risks will be explained by the study coordinator.
RSS
Twitter
Facebook
Hello
I have had ME/CFS for approximately 18 years but was diagnosed 2 years ago. My biggest dibilities are chronic fatigue and many headaches sometimes migraines. My brain fog is constant thus memory suffers greatly too, I cannot read anymore as my concentration lapses that much that I would be on the same book forever and a day. I forget names, where I am, why I am there and what I am supposed to be doing. I find these very upsetting and scary as I am only 42 and now cannot work. My legs ache and walking upstairs can be a struggle and makes me breathless.
I live in County Durham in the UK but would be very interested in any tests into this awful, dreadful illness.
Regards
Anne Sheldon
Bishop Auckland
County Durham
UK
Hello Anne. We’re very sorry to hear about the difficulties you’ve experienced — you’re not alone! The symptoms you’ve described are all very common, unfortunately. If you’re interested in participating in research studies in the U.K., you might consult with the ME Association (in the U.K.): http://www.meassociation.org.uk/?page_id=1086 There is also a research conference on May 31 in London, hosted by Invest In ME. More information about the conference can be found at http://bit.ly/YGhQnN.
More tests and studies that have already been done! When does Research 1st get to that part about pathogenesis and treatment? How many neuropsychological tests need to be done on CFS to know it’s a part of the disease already? Gosh does OI really exist? How many times does it have to be confirmed? How many biomarkers have to be found, the CDC isn’t going to accept any that aren’t found on routine panels and their “recommended” protocol for workup so why bother?
More wasted time and money.
Hi Dr. Cutler — We share your frustrations with the slow pace of progress, particularly when funding levels are so low. Taking a closer look, these studies build upon earlier observations and attempt to understand why certain phenomena occur — like increased brain fog with standing. Dr. Medow’s team anticipates that if they can understand the underlying mechanisms, it will be easier to target treatments. Dr. Natelson’s brain study is looking at several measures within individual patients — the field so far has suffered from single variable studies across a diversity of patient groups selected using different entry criteria. His team hopes that by measuring many variables at once, they will be able to synthesize the somewhat scattered reports that exist now.
Here is more information about these two studies:
Dr. Medow: “Brain Fog: What’s Going On?” http://www.research1st.com/2012/06/11/medow-riww/
Dr. Natelson: “Brainiacs: Natelson and Shungu Take On the CFS Brain” http://www.research1st.com/2011/10/07/brainiacs/
The CDC-sponsored case definition study has been described here: http://www.cdc.gov/cfs/programs/clinical-assessment/index.html
I’ve added these links to the post for the benefit of other readers. Thank you!
I was diagnosed with CFS two years ago, and would like to help by participating in research. I live in Kentucky; would I have to travel to NY to participate in this research?
Hi Lucy — These 3 studies do require onsite participation at the clinics in the NY area. Here is a listing of some other study opportunities: http://www.research1st.com/current-cfs-research/clinical-trials/
We’d love to have you enroll in the SolveCFS BioBank, a way to participate in patient-centered research from anywhere! We’re in the process of updating our online information about the BioBank, but you can learn more here (http://www.solvecfs.org/SOLVECFSBIOBANK/tabid/99/Default.aspx) or by sending an email to biobank@cfids.org. Thank you!
When I was diagnosed with CFS by Dr. Susan Levine more than a decade ago, the first thing she tried to do was a tilt-table-test, but this was thwarted by my GP at the time. In retrospect, there’s a good chance that Dr. Rowe’s study from a few years previously didn’t mean as much to MDs who didn’t know much about ME, after Dedra Buchwald published a negative NMH paper in JAMA. It’s 2013, and we still have to prove anything and everything, because absolutely nothing is accepted. So my eventual abnormal TTT result, and diagnosis of NMH, doesn’t really mean anything. It would be nice if this study, as well as the others, amounted to something–but two years on, we hear and see and read a lot about exercise for CFS. Not so much about proteins in spinal fluid, an interesting finding that should mean more than it seems to when the mantra of exercise and CBT seems endless. And those papers were published a week or two apart in February 2011.
I’m curious as to why the Post-Exertional Malaise study at NYC’s Mt. Sinai Hospital, under the direction of Dr. Derek Enlander, wasn’t mentioned here. Given that this site hosts pages dedicated to this “hallmark/cardinal” symptom, surely the CFIDS Association was aware this was a current research initiative that is also recruiting patients? I trust, especially since the PACE trial is all too prominent in the medical literature, that the Association is aware of the importance of demonstrating via objective measures the effect of exertion on CFS patients.
It is a pity you could not find the space to include this here.
Thanks, Jay. It often takes several years for research findings to become clinical standards. These investigators contacted us and requested help publicizing their studies. Dr. Enlander is most welcome to do the same.
Thank you, Kim. Would you say that CBT and exercise for CFS was a research finding that became a clinical standard?
I could be wrong, I would have to study the history of the literature, but it’s always seemed to me like these were clinical standards that eventually produced research findings.
I agree with your impression, Jay. Like off-label medications that later get studied in clinical trials to ensure safety and understand efficacy, CBT and exercise are standard therapy in many chronic conditions and some groups sought to collect evidence for their use. This kind of “reverse translation” is often more important to payors (insurance companies, Medicare, NHS) than clinicians.