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NEW CFS STUDY!!

Discussion in 'Active Clinical Studies' started by livingwithcfids, Oct 14, 2011.

  1. livingwithcfids

    livingwithcfids

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    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, complete it and send it in. Please use dark ink so that it is legible

    http://www.painandfatigue.com/new_research_studies.html


    If you have questions, call the Pain & Fatigue Study Center research staff at: 212-844-6747.OR email them at info@painandfatigue.com
  2. liquid sky

    liquid sky Senior Member

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    What does Dr. Natelson think the brain problems are? Does he lean to a neurological disease or will he be pushing towards a psychological one? Will psychotropic medications be the answer?

    I would have to have answers to these questions before I would consider participating.
  3. richvank

    richvank Senior Member

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    Hi, all.

    Dr. Natelson is a neurologist, and based on his past work I think it is clear that he will be looking at neurological aspects, not psychological ones. Also, the brain imaging work that has been done at the Cornell imaging center has been producing some clues into the biochemistry in the brain in ME/CFS, such as elevated lactate, and I think this is a very promising avenue of research.

    I don't happen to agree that the root cause of ME/CFS is in the brain in most cases, but I do think that the problems in the brain will give clues about the basic biochemical problem that I believe is at the root of ME/CFS.

    Best regards,

    Rich
  4. Enid

    Enid Senior Member

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    Interesting one this - my Consultant Neurologist (who definately did not think the brain problem was the cause of ME 10 years ago) did lumbar puncture and MRI brain scan which showed "high spots". Having ruled out MS and Polio he agreed it could be ME and was thought to be viral. He is still sitting on all his tests results until I could find "someone who knew" and to whom he would release all his results. I could barely move or speak at the time and the range of other symptoms (GI, passings out etc) did concern him making any diagnosis too difficult. Perhaps Dr Natelson will take things further now with much more understanding of the illness (if only the neurological side of things from which I exclude psychiatry - dysfunction of the immune and endocrine systems make up the whole picture)
  5. eric_s

    eric_s Senior Member

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    Yes, that's interesting. It's good to see we don't have to wait for them to be able to follow up on their last study (CSF proteomics). What i don't really understand is this:
    Why would that mean a brain problem is the cause? I think the cause could still be somewhere else. But anyway, i think it's important he can do these studies and i hope he will find enough participants quickly.
  6. Sing

    Sing Senior Member

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    livingwithcfids, do you know if we would be able to get our individual test results for our own records?
  7. madietodd

    madietodd Senior Member

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    I've just emailed them asking if the remuneration will cover travel expenses, and if participants get copies of their individual test results. I'll post their response.

    Madie

    Is a lumbar puncture as painful as it sounds?
  8. Enid

    Enid Senior Member

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    Difficult to answer that madie except doesn't have to be. Mine was done at a major hospital and by the Senior Consultant (dreading it myself from hearsay) - in the event he sent a junior to check previous spinal X-rays etc. and was so pain free I even had to ask if the needle was in.
  9. eric_s

    eric_s Senior Member

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  10. madietodd

    madietodd Senior Member

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    I received this reply, this morning:

    All of us at the Pain & Fatigue Study Center are delighted with your interest in our work. Unfortunately, the level of funding we have received is such that we do not even have funds to pay for local travel. However, we are reimbursing people for participating in our studies. While reimbursement for patients is modest [$125], that for healthy controls is more substantial [$500] and so possibly some members of your webgroup could come with an accompanying healthy control -- providing their own travel expenses.

    We would very much like to have CFS patients from outside our area. If there were anything you could do as a group to sponsor a trip east to participate in our studies, we would really appreciate your participation. As for results, we could provide volunteers data on their performance on one of the cognitive tasks we will be doing which is standardized, results of brain MRI scanning, and information as to whether their spinal fluid was grossly normal or not.

    Benjamin H. Natelson, MD
    Director, Pain & Fatigue Study Center, Beth Israel Medical Center
    Professor of Neurology, Albert Einstein College of Medicine
  11. livingwithcfids

    livingwithcfids

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    Thanks for looking into this madietodd! Darn, I wish I was healthy, then I could score 500 bucks! It's nice to know they will reveal the results to the patients; I filled out the questionaire, if I get accepted into the study I will be sure to post updates. I think we are finally on the brink of something large! CFS research is just flooding in from all directions. :)
  12. kday

    kday Senior Member

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    Nice try, but no. It wouldn't mean that a brain problem is the cause of ME/CFS. It would mean a brain problem is associated with ME/CFS. I already known brain problems are associated.

    But what does multiple chronic viral and bacterial infections have to do with a brain problem?

    Again, correlation ? causation, but I guess assumptions are fun.
  13. livingwithcfids

    livingwithcfids

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    Yes, I agree with you. I feel that some researchers are focused entirely on the brain, while others entirely on the immune system. Gathering up all the evidence, the most accurate way to describe ME/CFIDS is as a "neuro-immune disease" as the WPI has advertised.

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