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TESTING FOR CIGUATERA ASSAY AVAILABLE AGAIN!

From Winter 2009-2010 Forum

The only test to be so highly positive for over 95% of patients with CFIDS/ME is an assay for ciguatera toxin yet the PWC/MEs do not have ciguatera! Research has found, however, that they have a toxin very similar to ciguatera and researchers at the John A. Burns School of Medicine at the University of Hawaii, to differentiate between the two, called it the "ciguatera epitope". CFIDS/ME patients who had this test, considered the gold standard in toxicology for ciguatera, were told they could ask their physicians to change their diagnosis to the CDC's code of 988.0 since the CDC eliminated the classification of ME and uses a new classification for diagnosing CFS based on psychological tests (Empirical Defintion, 2005). The researchers were unable to continue testing over a year ago but are once more offering the test again. Because they are a non-profit entity, they only charge a fee to help pay for a laboratory tech to do the testing. Testing was again begun in late September for all patients who wanted it worldwide. It has proven to be a biomarker for autoimmune diseases. Nearly 800 PWC/MEs have proved positive to this assay from around the world who were diagnosed with myalgic encephalomyelitis, chronic fatigue syndrome, chronic Epstein-Barr virus, organophosphate poisoning, and post viral fatigue syndrome. Any hospital laboratory can draw your blood for this test although a physician must give you a script to draw your blood as law dictates that in the United States.

Protocol for Blood Sample Submission

University of Hawaii Department of Anatomy, Biochemistry, and Physiology

Fee: Please include a laboratory testing fee of $100 USD for each CFS test sample mailed for testing. Checks can be made out to "RCUH 1977" (Research Corporation of the University of Hawaii, acct# 1977) after you receive the results.

Blood Sample:

  1. Draw 5 ml in a Tiger Top or Plain Red tube.
  2. Spin blood, remove serum from tubes and place in a new, clean tube (at least 2 ml of serum is required for testing purposes).
  3. Fully seal tube and label with the patientís name, contact information and date. Keep serum cold (do not freeze). See shipping requirements below.

Shipping:

  1. Tube should be placed in a sturdy container and packaged to prevent breakage. Pack with some form of coolant (i.e. ice pack, gel pack) and reinforce with packing material. Seal package, place in shipping box.
  2. Label package including complete physician's name, address, phone/fax numbers, email address (if available), along with the patient's name, age, sex, and mailing address. Please check the 'No Signature Required' box in Section 8 of the FedEx airbill.
  3. Ship overnight priority via FedEx to:
    Dr. Yoshitsugi Hokama/Dr. Harry Davis
    University of Hawaii at Manoa, JABSOM
    Department of Anatomy, Biochemistry, and Physiology
    1960 East-West Rd., Biomedical Bldg. T-606
    Honolulu, HI, 96822
    Office (808) 956-7178
    yoshitsu@hawaii.edu
  4. Shipping and packing charges to be paid for by patient.

Results:

The patients physician will be contacted regarding the test results. Only the physician is authorized to call the laboratory for further information regarding the test result. Thank you for your understanding.


The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 *(781) 449-3535 Fax (781) 449-8606