CFS Study

Discussion in 'Fibromyalgia Main Forum' started by amymb74, Mar 7, 2006.

  1. amymb74

    amymb74 New Member

    RNA Genome Study in CFS: Conducted by Dr. Jonathan Kerr and Dr. Derek Enlander

    Did anybody here participate in this study? I just read about it today. AMY


    Dr. Jonathan Kerr in London and Dr. Derek Enlander In New York are collaborating on a RNA genome study in CFS. The study will map RNA of patients suffering from CFS in an approach to develop a diagnostic test and to define the pathogenesis of the disease. The test which would normally cost approx $400 is FREE, the FedEx shipping to London is not covered.
    Patients who are interested in the study should contact Dr Enlander at

  2. JenniferAnn539

    JenniferAnn539 New Member

    I'm participating.

    I had my blood drawn in January.

    I will receive my test results 6 months after the blood draw date. I am anxious and can't wait to get the results.

  3. amymb74

    amymb74 New Member

    I doubt it is - I would think they want as many participants as possible. I emailed him as soon as I read it so maybe you can do the same. AMY
  4. jane32

    jane32 New Member

    I think I will look into this. Do you go to any lab?

    Do you get the results?

    By did anyone ever tell you you look like Alyssa Milano? Your pic is so cute.
  5. amymb74

    amymb74 New Member

    I did the blood study w/Dr Les Simpson & had to send it out of the country - my doc just added it w/other labs. This doctor is the same one who is in the cfs video in another thread - thats how I found it. Amy
    OK - I just got an email back from them - you need to go to NY for a physical & to have the blood drawn. If you email them they will send you all of the info.[This Message was Edited on 03/07/2006]
  6. bigbud120

    bigbud120 New Member

    Can anyone who is participating in the study tell me what the prerequisites are to be accepted?

    I'm interested to know how they determine who has CFS (and is eligible for the study) compared to people who may suffer from other illnesses which present similar symptoms.

    Also, does anybody know whether they are taking one specific type of CFS patients (ie. acute/gradual, long term/short term, stable symptoms/gradual worsening or improvement, etc.) or are all types of patients being included?
    [This Message was Edited on 03/08/2006]
  7. amymb74

    amymb74 New Member

    The patient has to come to New York for physical examination and the RNA test blood drawing. The RNA test is free, funded by the British CFS Society. The test would normally cost $400. The FedEx charge to London is not covered ($45).
    In order to enter the study the patient must have the necessary criteria for a diagnosis of CFIDS / ME. These are listed in the Fukuda et al. publication and in Dr Enlander's Book "The CFS Handbook".
    A recent (less than 3 months) standard set of blood tests, EKG and Spirometry are required. If these are not recent they should be repeated.
    A comprehensive free questionnaire will be completed.
    The gene testing that we will be doing will not necessarily provide insights relevant to individual patients' treatment or diagnosis and that the purpose will be to analyse all patients and controls in one study and arrive at a gene signature for the disease. This information will provide insights into how the disease is caused and perpetuated and will lead to develop of
    therapies. It will therefore provide benefit to all (or most) patients once completed - that is the plan and hope.
    The RNA test which would cost approx $400, is FREE. It is covered by the research funds, the Specimen Fedex to London is not covered.
    If you wish to join the waiting list please contact us.

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