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Dr Nath's intra-mural study at NIH is currently recruiting

Discussion in 'Active Clinical Studies' started by Kati, Dec 9, 2016.

  1. Knockknock

    Knockknock

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    Hi RYO,
    I wouldn't doubt that Doctor Nath's interview show real good intentions to help the Me/ CFS comunity.
    If its true or just part of the political agenda? We gona know that in a couple years, francis collins sounded very truthfull and meaningfull when he said that Me/cfs was neglected, when he asure to use all fire power and look actions speak laugther than words.
    You can say and believe all you want sonim
    I, but the actions ia what it reflect the reality.
    More doctors more wide knowledge ofcourse we need that
    BUT


    Reality is that there is plenty of doctors out there with real knowledge, montoya, klimas, irma rey, lipkin and several doctors and researchers with the proper funding will go deep into research, there is alot new technology not aveilable years ago, to detect viruses, genes, mutations, they simply dont donit becouse they are seen thesame pattern, thesame resistance, thesame limited funding.
    I mentioned this before, Me/cfs has double or triple if not more, the amount of cases in USA and around the world, neuro immune illnesess are leading the epidemic.
    13 -15 million is not even close to the sense of unrgency that an illness like this deserve.
    Especially (abandoned)(ignored)been neglected for decades.
    Its thesame pattern over and over to much talk, but
    little real action, small controled studies.. 50 patients is not enough, not even close.
    There is not a single CFS researcher and experianced doctor in that study.
    Klimas, montoya and many other doctors are desperate for funding.
    They just dont get it from Nih.

    You maybe right about him, unfortunanly above him there is much much powerfull forces.
    To me they are afraid, concern of expousing whats behind this illness, that ofcourse increasing funding and research will eventually lead to that.

    I can not think other wise, notging else make sense to still limiting research, choosing such small budget still.

    Show me what they have really done, not what they saying, what they are saying compare to what they have said and what they had done to what they are doing is very similar to NONE
     
    Last edited: Feb 20, 2017
  2. Knockknock

    Knockknock

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    That will be great Avocancy ia what is shading ligh to this illness.
    Expousing how unexplainably neglected it ha been.
    Even now when they accepted what its
     
  3. viggster

    viggster Senior Member

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    Just fyi to update my previous post...I am accepted to the study. I didn't have good medical records from before I got sick, but the NIH team is accepting letters from people who knew me as evidence of my prior good health.
     
    Binkie4, Orla, Azriel and 15 others like this.
  4. Sasha

    Sasha Fine, thank you

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    Congratulations and thank you for being willing to be a guinea-pig to benefit the rest of us! :balloons:
     
    viggster and trishrhymes like this.
  5. RYO

    RYO Senior Member

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    Also accepted into study. I am currently in significant relapse. Hopefully they will find something useful.
     
    Binkie4, Azriel, ryan31337 and 10 others like this.
  6. BurnA

    BurnA Senior Member

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    Did they not see your photo at the continental divide in Colorado??
     
  7. Knockknock

    Knockknock

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    Were do i register to get into the study???
    Im Us and have a well documented illness.
     
  8. Knockknock

    Knockknock

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    Were do i register???
    I dont believe in the Nih good intentions, but it will be really good to be part of it, so i can see what they are really doing and if its something really helpfull or just a show.
    Can you sent me instructions.
     
  9. BurnA

    BurnA Senior Member

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    I doubt any patient will 'see' what they are really doing. The real work would happen for some time, long after the patient visits.
     
    Knockknock likes this.
  10. Knockknock

    Knockknock

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    I mean the tests they will preform on us
     
  11. BurnA

    BurnA Senior Member

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    Sure, but that info is all available, you should be able to find it easily on one of the threads here or on the NIH website.
     
  12. RYO

    RYO Senior Member

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    Knockknock likes this.
  13. Knockknock

    Knockknock

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  14. RYO

    RYO Senior Member

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    You can contact Ms Gavin via email. You should explain in detail how and when you got sick. Also explain your chronic symptoms. You must provide extensive medical records. Carefully read the inclusion and exclusion criteria to make sure you qualify for study.

    Good luck.
     
    Knockknock likes this.
  15. Knockknock

    Knockknock

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    Than
    thank you.
     
  16. viggster

    viggster Senior Member

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    Not sure, but testimonials from a few of my friends who have M.D.'s are sufficient.

    Edit: I'm impressed with how thorough the NIH is being in trying to get a complete picture of a person's health/abilities before and after getting sick.
     
    BurnA, Knockknock and Sasha like this.
  17. Knockknock

    Knockknock

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    Really!!!
    So you think this time around they are real????
     
  18. viggster

    viggster Senior Member

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    Here's a sample schedule the NIH provided to give an idea of how things will go. They originally planned about a week for each ME patient but have stretched it out to more like 10 days now.


    Admit
    Clincial Center

    Sun, Mar 19

    5:00 PM – 6:00 PM

    [​IMG]

    No breakfast until blood draw and saliva collection are complete
    DO NOT BRUSH TEETH!

    Mon, Mar 20

    7:00 AM – 8:00 AM

    Informed Consent/Dr. Walitt, Joy Kreskow
    7SW-N

    8:00 AM – 9:00 AM

    Buccal Swab/Saliva Collection/Urine Sample; Anita Jones, Ben Coleman
    7SW-N

    9:00 AM – 9:30 AM

    Venous Assessment
    Dowling

    9:30 AM – 10:00 AM

    Blood Draw/Anita Jones
    7SW-N

    10:00 AM – 11:00 AM

    Breakfast
    7SW-N

    11:00 AM – 12:00 PM

    Physical Exam/Dr. Walitt, Joy Kreskow
    7SW-N

    12:00 PM – 1:00 PM

    Holter Monitor
    EKG

    1:00 PM – 2:00 PM

    Lunch/Break
    7SW-N

    2:00 PM – 3:00 PM

    Symptom Profile, Medication Review/Dr. Walitt, Joy Kreskow
    7SW-N

    3:00 PM – 4:00 PM

    Ad hoc time/Rest
    7SW-N

    4:00 PM – 5:00 PM

    Order Dinner
    7SW-N

    5:00 PM – 6:00 PM

    Dinner
    7Sw-N

    6:00 PM – 7:00 PM

    [​IMG]

    Order Breakfast and lunch

    Tue, Mar 21

    7:00 AM – 8:00 AM


    Breakfast
    7SW-N

    8:00 AM – 9:00 AM


    Muscle Strength Testing/Ben Coleman
    7SW-N

    9:00 AM – 10:00 AM


    Psychological Assessment/Dr. Sinclair
    7SW-N

    10:00 AM – 12:00 PM


    Lunch
    7Sw-N

    12:00 PM – 1:00 PM


    Occupational Therapy/Bonnie Hodsdon
    7SW-N

    1:00 PM – 3:30 PM


    Rest
    7SW-N

    3:30 PM – 5:00 PM


    Order Dinner
    7SW-N

    5:00 PM – 6:00 PM


    Dinner
    7SW-N

    6:00 PM – 7:00 PM

    [​IMG]

    Breakfast
    Hydrate Well

    Wed, Mar 22

    8:00 AM – 9:00 AM


    Lumbar Puncture
    7SW-N

    9:00 AM – 11:00 AM


    Lie Flat
    7SW-N

    11:00 AM – 1:00 PM


    Lunch
    7SW-N

    1:00 PM – 2:00 PM


    Rest

    2:00 PM – 5:00 PM


    Order Dinner. Low fat, Low cholesterol, No caffeine
    7SW-N

    5:00 PM – 6:00 PM


    Dinner
    7Sw-N

    6:00 PM – 7:00 PM

    [​IMG]

    Breakfast. Low fat, low cholesterol. Hydrate well. No caffeine
    7SW-N

    Thu, Mar 23

    8:00 AM – 9:00 AM


    Lymphocytapheresis
    Dowling

    9:00 AM – 12:00 PM


    Order Lunch
    7SW-N

    12:00 PM – 12:30 PM


    Lunch
    7Sw-N

    12:30 PM – 2:00 PM


    Symptom Assessment Forms (Pack 1)/Ben Coleman
    7Sw-N

    2:00 PM – 3:30 PM


    Rest
    7Sw-N

    3:30 PM – 5:00 PM


    Order Dinner
    7Sw-N

    5:00 PM – 6:00 PM


    Dinner
    7Sw-N

    6:00 PM – 7:00 PM

    [​IMG]

    Order Breakfast
    7Sw-N

    Fri, Mar 24

    8:00 AM – 8:30 AM


    Breakfast
    7Sw-N

    8:30 AM – 9:30 AM


    Neuropsychological Testing/Michael Tierney

    9:30 AM – 1:00 PM


    Lunch

    1:00 PM – 2:00 PM


    Rest
    7Sw-N

    2:00 PM – 5:00 PM


    Order Dinner
    7Sw-N

    5:00 PM – 6:00 PM


    Dinner
    7SW-N

    6:00 PM – 7:00 PM

    [​IMG]

    Order Breakfast
    7SW-N

    Mon, Mar 27

    8:00 AM – 9:00 AM


    Breakfast
    7SW-N

    9:00 AM – 10:00 AM


    Clinical Assessments/Dr. Gill, Dr. Friedman, Stacy Solin
    7SW-N

    10:00 AM – 12:00 PM


    Order Lunch
    7SW-N

    12:00 PM – 12:30 PM


    Lunch

    12:30 PM – 2:00 PM


    Symptom Assessment Forms (Pack 2)/Ben Coleman

    2:00 PM – 3:30 PM


    Rest

    3:30 PM – 5:00 PM


    Order Dinner
    7SW-N

    5:00 PM – 5:30 PM


    Dinner
    7SW-N

    5:30 PM – 7:00 PM

    [​IMG]

    Order Breakfast. No fruit, No fruit Juices, No caffeine.
    7SW-N

    Tue, Mar 28

    8:00 AM – 8:30 AM


    Light Breakfast
    7Sw-N

    8:30 AM – 9:30 AM


    Autonomic Testing/Dr. Goldstein
    7SW-N

    9:30 AM – 12:00 PM


    Order Lunch
    7SW-N

    12:00 PM – 12:30 PM


    Lunch

    12:30 PM – 1:30 PM


    Rest

    1:30 PM – 5:00 PM


    order dinner
    7SW-N

    5:00 PM – 6:00 PM


    Dinner
    7SW-N

    6:00 PM – 7:00 PM

    [​IMG]

    Order Breakfast
    7SW-N

    Wed, Mar 29

    8:00 AM – 9:00 AM


    Breakfast
    7SW-N

    9:00 AM – 10:00 AM


    Psychiatric Inventories/Ben Coleman
    7SW-N

    10:00 AM – 12:00 PM


    Order Lunch
    7SW-N

    12:00 PM – 12:30 PM


    Lunch
    7Sw-N

    12:30 PM – 1:30 PM


    Rest
    7SW-N

    1:30 PM – 3:00 PM


    Dr. Nath Assessment
    7SW-N

    3:00 PM – 4:00 PM


    Rest
    7SW-N

    4:00 PM – 5:00 PM


    Order Dinner
    7SW-N

    5:00 PM – 6:00 PM


    Dinner
    7SW-N

    6:00 PM – 7:00 PM


    Sleep Study
    7SW-N

    Wed, Mar 29

    to

    Thu, Mar 30

    7:00 PM – 12:00 AM

    [​IMG]

    Order Breakfast
    7SW-N

    Thu, Mar 30

    8:00 AM – 8:30 AM


    Breakfast
    7Sw-N

    8:30 AM – 9:30 AM


    Dietitian Assessment
    7SW-N

    9:30 AM – 11:00 AM


    Dr. Snow Interview
    7SW-N

    11:00 AM – 11:30 AM


    Order Lunch
    7SW-N

    11:30 AM – 12:00 PM


    Lunch
    7SW-N

    12:00 PM – 1:00 PM


    Rest
    7SW-N

    1:00 PM – 3:00 PM


    MRI

    3:00 PM – 5:00 PM


    Order Dinner
    7SW-N

    5:00 PM – 5:30 PM


    Dinner
    7SW-N

    5:30 PM – 6:30 PM

    [​IMG]


    Order Breakfast
    7SW-N

    Fri, Mar 31

    8:00 AM – 8:30 AM


    Breakfast
    7SW-N

    8:30 AM – 9:30 AM


    Discharge
    7SW-N

    10:00 AM – 10:30 AM

    [​IMG]
     
    Joh, mango, A.B. and 1 other person like this.
  19. Kati

    Kati Patient in training

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    What strikes me is psychology, neuro-psych and psychiatry assessment. One of them is completely legit, but you know, that is a lot of assessment for someone who is physically ill.

    i wonder who is the Dr Gill who will perform the clinical assessment. The dr Fred Gill we know from NIH (was it state of knowledge meeting, 2011) was a psychologizer.

    Best wishes @viggster
     
    Last edited: Mar 21, 2017
    Zombie_Lurker, Lindberg, Joh and 5 others like this.
  20. TiredSam

    TiredSam The wise nematode hibernates

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    I would have put the muscle testing at the end, just in case.
     
    Valentijn, Snow Leopard and Hutan like this.

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