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Do brain problems drive ME/CFS and fibromyalgia? Dr. Natelson is recruiting

Discussion in 'Active Clinical Studies' started by Firestormm, Jan 10, 2012.

  1. Firestormm


    Cornwall England
    9 January 2012:

    Do brain problems drive ME/CFS and fibromyalgia? Dr. Natelson is recruiting for studies to find out

    Benjamin H Natelson, MD - a leading neurologist specializing in chronic fatigue syndrome (ME/CFS) & fibromyalgia research at Beth Israel Medical Centers Pain & Fatigue Study Center in New York - believes that the seat of these conditions lies in the central nervous system, and has published more than a dozen papers on the subject in the past two years alone.

    For example, last year, Dr. Natelson played a lead role in the groundbreaking report demonstrating that the cerebrospinal fluid profiles of chronic fatigue syndrome and post-treatment Lyme patients differ extensively - both from those of healthy controls and from each other (Distinct cerebrospinal fluid proteomes differentiate post-treatment Lyme disease from chronic fatigue syndrome). Some of his other recent studies have focused on neurological comparisons of ME/CFS subsets, including patients with and without fibromyalgia, and improvers vs. non-improvers.

    New Studies of Abnormal Brain Chemistry in ME/CFS and FM

    Currently Dr. Natelsons group is recruiting for two ongoing projects to expand on those findings. The trials are described on the Pain & Fatigue Study Center site as follows:

    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. If you are interested in participating in any or all of these studies, please CLICK HERE to get the Health Screen Form. (Download it, complete it and FAX it in.) Please use dark ink so that it is legible.


    FM patients often complain of brain fog, and Dr. Natelson and a group at Cornell-Weil Medical College have recently found an abnormality in brain chemistry in some CFS and FM patients. This abnormality may be important in providing doctors a test for diagnosing CFS or FM, and so the researchers are continuing their studies of this "biomarker of disease."

    The idea of this study is that a drug called Milnacipran, FDA approved to treat the pain of FM, will improve brain fog and will reduce the levels of the brain chemical abnormality. Subjects in this study will come into the center for a free medical evaluation to determine if they have FM. They will then fill out some questionnaires, do a 20-minute test for brain fog and undergo brain MR imaging.

    Afterwards, subjects will either receive Milnacipran or a placebo (inactive substance) for 8 weeks. Having some patients take placebo lets the researchers figure out the role of the drug.

    At the end, testing will be repeated to learn the effects of the drug on improving FM. To become involved in this study, the researchers need to know more about you and your illness which you can provide via a Health Screen Form. To provide that information, CLICK HERE to get the Health Screen Form. (Download it, complete it and FAX it in.) Please use dark ink so that it is legible. We will call you right back to speak with you about participating.

    Volunteers will be compensated for their time. With your participation, knowledge about CFS and FM will move ahead.

    If you have questions, call the Pain & Fatigue Study Center research staff at: 212-844-6747.
  2. Nielk


    It's great that Natelson and Co. are doing these studies on the brain. He is a Neurologist, so it makes sense that he is concentrating on the brain. They already did studies that showed a diiference in CFS patients in proteins of the spinal fluid compared to controls.
    What I don't understand is the statement that if they do find these brain abnormalities in CFS patients, that will mean that it's the CAUSE of CFS for these patients. Why?
    It could just be a by-product. Just like when they found that XMRV is in the blood of a large percentage of CFS patients. It wasn't a foregone conclusion that this was the cause of the disease.
    Enid likes this.
  3. Jenny

    Jenny Senior Member

  4. Enid

    Enid Senior Member

    I'm sure it is so and many have said - not brain in the sense of going cuckoo - so be careful you neurologists - its's not that that but very basic centers controlling basic bodily functions only.
  5. Snow Leopard

    Snow Leopard Hibernating

    South Australia
    I thank anyone here who chooses to participate in this study in advance...

    Who knows? But doing this sort of testing is necessary if we are to have a deeper understanding of the pathology of ME/CFS.
  6. Nielk


    Yes, I agree- it's an important study.
  7. *GG*

    *GG* senior member

    Concord, NH
  8. PhoenixDown

    PhoenixDown Senior Member

    But what does that mean? There's no such thing as going cuckoo, it's a cop-out word for when you don't know what's wrong with someone.

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