NCF - Lupus, Okadaic Acid & CFIDS

Discussion in 'Fibromyalgia Main Forum' started by moonlightkitty, Sep 10, 2005.

  1. moonlightkitty

    moonlightkitty New Member

    I just did a quick search and can't see any discussion on here on this. I know there were a couple of people in the past following the NCF/ciguatoxin research.

    Did anyone read the paper on their website about lupus and okadaic acid? The NCF stated that the research that they will reveal soon is based on this paper.

    The paper is from 1996 and explains how a toxin, okadaic acid (like ciguatera, also a fish poison) was found in the blood of lupus patients. It postulates that the toxin could also reactivate old HERPES VIRUSES like EBV etc.

    It seems they must be thinking the ciguatoxin found in CFS patients behaves like the okadaic acid in lupus patients. I also found a little blurb saying that Dr Hokama (the ciguatera expert leading this research) recently found the okadaic acid reacted to the ciguatera antibody test thingie (sorry lol).

    Well whatever it is is going to be in their next newsletter. I get mine first (for some reason it reaches Australia first) so I'll keep anyone here who's interested informed.

    Christine
  2. vickiw

    vickiw Member

    what is NCF? I did a google search on NCF/ciguatoxin research, but couldn't find anything.

    Vicki
  3. moonlightkitty

    moonlightkitty New Member

    Hi Vicki,
    The NCF is the National CFIDS Foundation. If you type into google NCF ciguatoxin, the first couple of results are from their website and explain a bit about it. The second link that comes up on google is the best introductory explanation I think.

    Also try typing NCF CFS and the third link that comes up is their homepage.

    Basically, it's a toxin they found in 96% of CFS patients (and in some other diseases like cancer and hepatitis, but in much lower levels) that they think is causing a lot of the damage in our bodies.

    For example, it's been found that it kills red blood cells and that this could explain the low blood volume found in CFS patients.

    They've also found it causes a lot of the immune abnormalities that show up in other research.

    The toxin is almost exactly like ciguatera fish poisoning, but not the same substance. Therefore they call it a 'ciguatera epitope'.

    We don't have it because we have fish poisoning - they believe it's being produced by something inside the body, some type of pathogen.

    Since last year some time, they've hinted that they know what the pathogen is but have stressed that they can't reveal anything until they publish their findings in peer-reviewed journals.

    They've explained that it will be extremely detrimental to patients in the long-term if they don't do this through the proper channels, as it will hurt further research efforts and the development of drugs for this (as far as I understand - someone correct me if I'm wrong). Their research would also not be taken seriously by medical professionals and would result in the continued trivialisation of this illness.

    So in a few weeks, when the next newsletter comes out, we should know... should be very interesting.

    Christine
  4. vickiw

    vickiw Member

    This is fascinating. It's the first I've heard of it, but I'll keep an eye out for information about it.

    Re: your comment "They've explained that it will be extremely detrimental to patients in the long-term if they don't do this through the proper channels, as it will hurt further research efforts and the development of drugs for this."

    Have you read Osler's web? The book is a history of CFS from 1985 - 1995 and the politics of research in that area. It's amazing how the truly important focus can get lost in the "game." I'm glad Dr Hokama is moving ahead carefully.

    Vicki

    P.S. Sorry for the delay in replying. This board moves along so fast, I missed your post!
  5. moonlightkitty

    moonlightkitty New Member

    I've only read quotes from Osler's web in relevant articles. I have the book and have looked up a few things in it, but there's no way I can get through it. I can read a bit online and force myself to read printed articles sometimes, but only a couple of pages. Once I put my head down, my neck pain is so bad and I can't move my eyes across the page. But from what I've read and heard it's an amazing book and so important.

    I've been following the NCF stuff for a while now, and have been waiting to to know about these findings for over a year. I'm trying not to get worked up about it, but I really am anxiously awaiting this - it feels like time is going so slowly it's going backwards!
  6. moonlightkitty

    moonlightkitty New Member

    I just wanted to add to what you said here, Konrad, and let people know that if you subscribe to the newsletter, the money goes to research. And if you can't afford to subscribe, they will send it to you gratis as they believe in keeping patients informed.

    Yes the Cheney stuff is interesting, has that been discussed on here much? I don't know that he really has the answers on 'saving your life' just yet... people are taking his theorem with a grain of salt at this point. And as far as I can tell, this just comes back to it probably being a virus anyway... so all the research in that field will likely end up being relevant to what Cheney is postulating and probably provide the answers.

    Christine