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Just finished Cerebrospinal Fluid Study (Dr. Natelson)

Discussion in 'Active Clinical Studies' started by kms1990, Jan 24, 2012.

  1. kms1990

    kms1990

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    Hi,

    I just got back from NYC for a spinal tap with Dr. Natelson. He is doing a study on brain dysfunction and Cerebrospinal Fluid (CSF) protein abnormalities. I will say that the spinal tap is not the most enjoyable experience, but I really felt obligated to participate after seeing the results of his last CSF study. It shows very prominent differences in Spinal Fluid protein levels of CFS patients and healthy controls. This is a very possible cause for neurological dysfunction..... If you are interested please see the second link.


    Previous CSF study:

    http://www.ncbi.nlm.nih.gov/pubmed/21383843

    Current Study Link:

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

    Feel free to ask me any ?s. You get 150$ for doing it.


    pone.0017287.g001.jpg
  2. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    Thanks for posting and doing this. I have participated in a couple of studies, not sure I would do this one, I hear it is rather/really painful!?

    GG
  3. Enid

    Enid Senior Member

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    Thanks for posting kms - I always felt that something should have shown up at the time of my own 10 years ago. It was a little unpleasant but not painful when the experts do it. It is good to see this study.
  4. Nielk

    Nielk

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    I would do it but, there is no way that I can get off my Klonopin for two weeks for this.
  5. shannah

    shannah Senior Member

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    It's nice to hear from someone who's participating.

    Did they give any indication of how long the study will run for or a target date for completion?

    Thanks for posting and welcome to the group here.
  6. kms1990

    kms1990

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    Thanks Shannah,

    I asked a few questions during the testing, I believe I was one of 4 two have had the spinal tap already. I think the study just started. They are looking for 30 healthy controls and 30 CFS patients. I know they are paying health controls 500$ to participate. If you are interested I would defiantly contact them. I know they are looking for a specific CFS subset. I think more neurologically affected.

    I feel that this test could be a real biomarker, as I don't know of any other test that showed distinct differences in CFS patients from healthy people. This one did, and even showed distinct differences from post lyme patients.
  7. shannah

    shannah Senior Member

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    Thanks kms,

    It's not possible for me to get to New York but it's the differences between the chronic Lyme and the ME/CFS patients that really intriques me. There are many that have a dual diagnosis of both.

    I'll be interested in how this play's out but looks like it may be quite a while.
  8. John Mac

    John Mac

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    Hi kms,

    Did they take a sample of your blood? There was talk about seeing if they could seperate the cfs/lyme/control groups by analysing their blood. or was that a different study, I'm not sure. A blood test would be a lot more useful than a spinal tap.
  9. kms1990

    kms1990

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    Hi John,

    Yep they did take a sample of my blood as well. I am not sure how this will be used in the study. Though this would be much more efficient as a biomarker, I feel that CSF will be the route that is most promising. Its the fact that CFS cannot be diagnosed via a blood test that is so troubling. Rarely CFS patients even have significant consistent abnormalities in their blood. Even the immune stuff which many CFS patients have is far too variable form patient to patient. Also, abnormalities in CSF could and most likely would cause neurological dysfunction.

    I have a terrible spinal tap headache today, I am told that this goes away with time. It stopped me from doing what I needed to all day.
    Persimmon likes this.
  10. searcher

    searcher

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    I just completed the study as well. The spinal tap itself was not painful (surprisingly), but I am not looking forward to the likely headache that often follows. I think the study has the potential to lead to a lot of discoveries, although I think it is a tough study to get through for patients.

    I think the lactate found in the MRI is really interesting since it indicates bad blood-flow/mitochondrial issues.
    SOC likes this.
  11. kms1990

    kms1990

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    Searcher,

    My headache is pretty bad 48hrs later. One suggestion is that don't try to over do it right after even if you don't have a headache. I tried to do 12hrs of classes the next day, and thats why I think I have such a bad one now. Im sure Dr. Soto advised you on all the meds you can take. I wouldn't hesitate to start with the right away.

    Lying down helps a lot!
  12. searcher

    searcher

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    I'm glad I saw your post! I starting popping the tylenol and downing the caffeine/sports drinks as he recommended. I will try to take it easy tonight and tomorrow and will hope I am ok for my flight on Friday...

    I wish we could get a copy of our neuropsych tests. I am really curious about how I did.

    I hope your headache starts fading soon!
  13. LiveAgain

    LiveAgain

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    I was thinking about the original study just today and wondering why if they found distinguishing features in CFS patient's spinal fluid, why they haven't talked about what those differences are? And why can't they use those findings to test more CFS patients? Is this study intended to expand upon those original results? Thank you both for participating in this research. It's not an easy study and by doing this, you help all of us.
  14. Persimmon

    Persimmon Senior Member

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    Hi searcher and kms1990,

    Are you going to be given your individual test results when that data is analysed?
  15. kms1990

    kms1990

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    Hi,

    First, I think the reason for this study is to build upon the results from the last study done. The problem is there are so many proteins within our bodies, and also the samples from all participants are thrown together in order to get enough specimen to test. Yet another problem is that we do not know what all the proteins do, especially the new ones in the CFS patients. Also, Im sure many many studies like this would need to be done in order to make certain that the proteins found were prevalent in almost all CFS patients. This would defiantly need to be done for it to be used as a diagnostic tool.

    For all the reasons above we are not given the individual test results. However, I did ask for the doc to do a basic look at the MRI involved. There were no significant abnormalities found. (no lesions hopefully).
  16. ramakentesh

    ramakentesh Senior Member

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    and some dont hang around long enough to be detected as well.
  17. searcher

    searcher

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    Sorry for my slow response. Thankfully kms1990 answered your questions.

    In regards to individual test results, I got a copy of all of my blood test results (normal set like CBC, thyroid, etc.) I also got the basic spinal tap results, including lactate. And I got a copy of my MRI on DVD and an interpretation done by a neurologist.

    It would be interesting to get our individual metabolite results but we will only see those in aggregate. Hopefully it will confirm the earlier results, which showed increased cerebral lactate and lowered glutathione. I would bet money that it will confirm those results.
  18. Enid

    Enid Senior Member

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    Very interesting thread - thanks so much. Having had the same tests/investigations years ago (no explanation) - diagnostics at last.
  19. cph13

    cph13 Senior Member

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    Hi all! Just an update on Dr. Natelson's studies.
    This testing is still ongoing. They are also doing, within in the next two months (in conjunction with Cornell) an antioxidant treatment using food based supplements. I WONDER IF THE IS THE RICH VANK protocol? Boy, would that be great. Natelson's office had little info. on that one. I hope to be accepted for that one.
    I too am on Klonapin. I also could NOT give up "k" at this point. Therefore, I would not quality for the spinal tap studies. There are 2 studies both with spinal tap. One though also includes receiving MILNACIPRAN for 8 weeks.
    I will be seeing both Natelson and Dr. Gittleman ( a psychologist) for a non pharma. approach addressing controlling pain, fatigue and UNREFRESHED SLEEP this month. I would appreciate to see updates from anyone on NAtelson's studies or if anyone is a current patient. xo cph
  20. liquid sky

    liquid sky Senior Member

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    Minacipran (Savella) is an SNRI used to treat Fibromyalgia. Anyone have a good response to this?

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