RED LABS tests for Chronic Fatigue Syndrome.....

Discussion in 'Fibromyalgia Main Forum' started by ulala, Jul 1, 2006.

  1. ulala

    ulala New Member

    Anybody have this test done?

    Labo & tests - our scienceConfirmation test
    Quantitative Measurement of RNase L Proteins: The Confirmatory Test to Aid in the Diagnosis of Chronic Fatigue Syndrome

    Chronic Fatigue Syndrome (CFS) is recognized as one of the most common chronic illnesses in the world. CFS is a complex disease syndrome of unknown etiology, afflicting people of all ages. Currently CFS is defined by its symptoms(1), the hallmark of which is chronic, debilitating fatigue of six months or more in duration. In addition, patients suffer from a number of physical problems including myalgia, arthralgia, cognitive impairment, and sleep disorders.


    Emergence of a Possible Diagnostic Marker

    In 1995, Dr. Robert Suhadolnik and his co-workers at Temple University, Philadelphia, PA, detected a novel intracellular protein related to RNase L, one of the interferon-inducible enzymes.

    These enzymes, which also include 2'-5' Oligoadenylate Synthetase, and double-stranded RNA dependent Protein Kinase, play a key role in protecting the cell from viral infection.(2,3)

    The novel protein was determined to have a molecular weight of approximately half of the native RNase L (and is thus referred to as the Low Molecular Weight RNase L or 'LMW,' while the native RNase L protein is referred to as the High Molecular Weight (HMW) species).

    Working together with clinicians Daniel Peterson and Paul Cheney, Dr. Suhadolnik was able to demonstrate the presence of this LMW protein in a subset of patients with CFS.(4,5)

    His findings were independently confirmed by Dr. Bernard Lebleu, at the Institute for Genetic Molecular Medicine, Montpellier University, Montpellier, France, working together with clinician Kenny De Meirleir at the Free University of Brussels, Belgium.(6)


    Development of a Clinical Assay

    In 1998, R.E.D. Laboratories began offering the assay for the RNase L LMW protein.

    The assay is performed by 1) preparation of a cytoplasmic extract of the patient's peripheral blood mononuclear cells, 2) combination of this extract with a labelled probe that binds specifically to 2'-5'A-binding proteins such as RNase L and the LMW species, 3) SDS-polyacrylamide gel electrophoresis, and 4) densitometry to determine the relative quantities of 2'-5'A-binding proteins (see Figure 1 below).



    Results & Interpretation

    Results are quantified with normal reference ranges provided. A numerical value is calculated by densitometry as "the amount of LMW protein present divided by the amount of native (HMW) RNase L present" multiplied by a factor of 10 (or (LMW/HMW) x 10).


    Preliminary data indicate the following:

    Negative: Ratio <0.1 - 1.9 XXXXX Positive: Ratio = 2.0 or more

    (Please note: The results of this test should be used in addition to all other relevant clinical data before making a diagnosis and/or a recommendation for treatment. Ranges are subject to change dependent on future data.)


    This test was developed and its performance characteristics determined by R.E.D. Laboratories. It has not been cleared or approved by the U.S. Food and Drug Administration (FDA).

    The FDA has determined that such clearance or approval is not necessary. This test is used for clinical purposes. It should not be regarded as investigational or for research.


    References
    1. Holmes, G., et al., "Chronic Fatigue Syndrome: A Working Case Definition," Annals of Internal Medicine 108:387-389 (1988).
    2. Suhadolnik, R., et al., "Changes in the 2-5A Synthetase/RNase L Antiviral Pathway in a Controlled Clinical Trial with Poly(I)-Poly(C12U) in Chronic Fatigue Syndrome," In Vivo 8:599-604 (1994).
    3. Suhadolnik, R., et al., "Upregulation of the 2'-5'A Synthetase/RNase L Antiviral Pathway Associated With Chronic Fatigue Syndrome," Clinical Infectious Disease 18:S96-S104 (1994).
    4. Suhadolnik, R., et al., "Biochemical Evidence for a Novel Low Molecular Weight 2'-5'A-Dependent RNase L in Chronic Fatigue Syndrome," Journal of Interferon & Cytokine Research 17:377-385 (1997).
    5. Suhadolnik, R., et al., "Biochemical Dysregulation of the 2'5A Synthetase/RNase L Antiviral Defense Pathway in Chronic Fatigue Syndrome," Journal of Chronic Fatigue Syndrome 5:223-242 (1999).
    6. De Meirleir, K., et al., "A Novel 2'-5'A Binding 37 kDa RNase L as a Biochemical Marker for Chronic Fatigue Syndrome," American Journal of Medicine 108: 99-105 (2000).
  2. LISALOO

    LISALOO New Member

    I had the test for Rnase-l. It was positive

    This cannot be used as a definative marker, however, because only 60% of people with CFS test positive. Since Ampligen is not available yet, there's nothing to treat this with yet.
  3. ulala

    ulala New Member

    treats the low weight protein.

    The NCF has this on their web page:

    Total Exposure: Expanded Model for RNase L Fragmentation in CFS Uncovered; The National CFIDS Foundation Announces The Use Of Elastase Inhibitors as a Potential Treatment for CFS Innovations.

    I'm not familiar with what elastase inhibitors are. Is Ampligen and elastatse inhibitor?

    This seems to make sense for those of us who have high virus antibodies and feel like we have mono all of the time.
  4. findmind

    findmind New Member

    Yes, R-nase-l is an important factor in illnesses that damage the immune system, like CFS; however, this is just one more abnormality found in PWCs (people with CFS).

    I don't think it has any real value because there is no common treatment criteria established yet.

    I am hoping that by the time the rest of the doctors in America "get the picture" the fibro and fatigue centers will have established a "best practice" protocol that can be accepted by the AMA, FDA, CDC, NIH, WHO, etc.

    I cannot imagine an HMO taking the time to practice medicine the way the FFC clinic docs do, so to me the big question will be whether the medical "bosses" of this country will allow people to get "outside" care from these "specialists" called the FFC, no matter what health insurance you have.

    And how about the people on SSI and Medicaid? The really desperately poor of this country? Think NIH/CDC/AMA will approve a $10,000 a year treatment for them?

    I try to be optomistic, but the complications regarding the future of treatments for us are daunting.

    But, there's always hope! I always say...
    findmind



  5. ulala

    ulala New Member

    treats the low weight protein.

    The NCF has this on their web page:

    Total Exposure: Expanded Model for RNase L Fragmentation in CFS Uncovered; The National CFIDS Foundation Announces The Use Of Elastase Inhibitors as a Potential Treatment for CFS Innovations.

    I'm not familiar with what elastase inhibitors are. Is Ampligen and elastatse inhibitor?

    This seems to make sense for those of us who have high virus antibodies and feel like we have mono all of the time.
  6. findmind

    findmind New Member

    I missed the discussion, but put elastase inhibitors in search, by content, and go down to 11/01/03, drtomcat.

    Very good explanations to read. The whole thread is great.

    Many of us old-timers have been talking about all the research ad nauseum for years, but we forget it until someone like you reminds us to think about it again!

    Thanks, friend

    There's always hope
    findmind
  7. ulala

    ulala New Member

    I went to the FFC home page and they have a short article on RNase. They say they treat this with prescription and non-prescription drugs. Looking through some of the posts on this site when searcing elastase I see one that says that heparin is an elastase inhibitor.

    I just posted what the FFC has on their site. I have to go back to it because it's hard for me to remember if it's the enzyme that degrades?

    If you get a chance read what the FFC has posted. I asked if anyone is being treated with elastase inhibitors. This is all tied in with what has recently been posted on the NC web iste.

    We'll have to figure out what elastase inibitors are being used. Thanks!!
    Thanks!
  8. findmind

    findmind New Member

    The abnormal elastase enzyme degrades STAT-l and RNaseL.

    I think the NCF newsletter wrote about this about a year ago...and I'm pretty sure they suggested boswellic acid to help treat it. I'll try to find the newsletter, or the web site.

    Interesting stuff, huh?

    findmind
  9. HuggyBear1

    HuggyBear1 New Member

    Hi,
    I am a patient of Daniel Peterson's and they have been using the blood pellet test for RNasel for quite some time. They have been trying to get it approved thru the FDA as THE CFS diagnostic test but it hasn't happened yet. I have recently been tested for my RNasel proteins and they were found to be quite high which puts me in a relapse mode. Dr. Peterson is also researching with HHV-6A which was found in my blood periphery and I've also just heard of something else from the ProHealth emails I get. Something called parinfluenza-5. You might want to search their archives for this info and any on HHV-6A. The good news about the RNasel tests is that they are now covered by Medicare and the blood does not have to be sent to RED labs in Belgium. There is now a RED labs in Stead that may have been moved to Reno NV.

    I don't know if Ampligen is an elastase inhibitor, but you can read about it at this website http://wwcoco.com/cfids/ampligen.html
    I was part of the AMP-516 double-blind study at Dr. Peterson's clinic but, unfortunately for me, I was receiving the placebo for the majority of the study so did not realize any substantial benefit from it. And because I could not afford to continue on it, my condition has deteriorated.

    Also, there was a new book put out by Kenny DeMeirlier from Belgium and other authors about CFS. You can buy it thru Barnes and Noble but it is a bit expensive and technical.

    Chronic Fatigue Syndrome: A Biological Approach
    Patrick Englebienne, Kenny De Meirleir
    Format: Hardcover Pub. Date: February 2002

    [This Message was Edited on 07/03/2006]
    [This Message was Edited on 07/03/2006]
    [This Message was Edited on 07/03/2006]
    [This Message was Edited on 07/03/2006]
  10. ulala

    ulala New Member

    findmind-I've been reading about the elastase inhibitors on this site, and also Dr. Meirieir's work. I think he is going to present some information at the CFS Conference in Ft. Lauderdale in Jan 07.

    There are a lot of posts here about Boswella, especially from Tansy who has not posted since the first of the year. She used to post a lot, I wonder what happened. Maybe she got better. She was having success with Boswella. Have you tried it?

    I also read that Dr. Meirier is pushing something called Acclydine. You can do a search on it, it is supposed to stimulate human growth hormone. I just saw a clinical trial for it. The company is OptiPharma and because it's from a plant a prescription is not needed. I'm not sure if you can get it in the U.S.

    From the posts that I have read it seems that Meirieir was also recommending an antibiotic cephobid. I think it is only available by shot or IV and may not be safe for people allergic t penicillin, which I am.

    There are a group of doctors who are calling for Meirieir to stop seeing patients forever. They are outraged that he had not made public his work on the elastase inhibitors (EI).

    I'll have to keep reading about this because I don't know anything about EI. Thanks for the info!

    Huggybear-I'm sorry that you were not able to get the Ampligen. That is so disappointing! I know that it is so expensive! It's a shame that there are things out there that may help but there always seems to be hitch.

    I just recently read about Red Labs and they are in Reno, NV. I may have had the RNase test at Dr. Holtorf's office> I'll have to check. I read somewhere on this site that heparin is an elastase inhibitor, but I don't know if that is true. Dr. Holtorff prescribed heparin for me and it helped me a lot, but not a cure for me.

    Are you being treated with anything for the positive RNasel proteins or HHV-6A? I don't know anything about HHV-6A either but I assume that one of the antivirals is used to treat it.

    There have been a lot of posts here about the parainfluenza-5. I read one of the patents that has been applied for and one fo the suggested treatments is protease inhibitors, DMSO was also mentioned.

    Thanks for the info about the book. I may go and take a look at it. I read something about the book in an article about the doctors that are so mad at Meirieir because they say, he buried a lot of info in this book that could have benefitted so many people who have been sick for so long and some who have even died!

    I really wish Oprah or Dr. Phil or Anderson Cooper would do a story on this and bring it to the public’s attention.

    Of course they are concerned with what makes good TV, but I think that this could!

    Thanks for all the info!
  11. Forebearance

    Forebearance Member

    I just found this thread now and I appreciate your posts a lot!

    Maybe we should all e-mail Dr. Sanjay Gupta at CNN and ask him to do an in-depth report on CFS. I think it would make a good story: a silent pandemic that has been happening under everyone's noses without publicity because it doesn't kill people (usually).

    Forebearance
  12. Gothbubbles

    Gothbubbles New Member

    The test is a great breakthough, but the discoverer was paid a great deal by the drug company that produces ampligen. It is my belief and the belief of others that he's pushing ampligen for money, and it's not clear whether ampligen is really able to help us.

    I will wait and see what the FDA decides, but I am skeptical.
  13. cherylsue

    cherylsue Member

    Ampligen is awaiting FDA approval Phase III clinical rials are being run by Dr. Petersen, Dr. Bateman, and Dr. Lapp. It may be available in the next 3-5 years, but very expensive. Treatment is for 6 months and may cost over $10,000.

    CherylSue

  14. elliespad

    elliespad Member

    nothing to add, but give a bump
  15. karinaxx

    karinaxx New Member

    i posted a few times on the topic about RNase L and Dr.Meirleirs work and put it in context to PIV-5 , loss of STAT 1 and HHV-6 and Dr.Gows Gene R.
    just check under my profile under: Research stuff put together,part three the cause?, and Dr.Gow Gene S. and Dr.Meirleir.

    (i am to sick in the moment, to add something here.)

    take care
    karina



    [This Message was Edited on 11/06/2006]