Replied by Prioris (Fl, Usa) on 10/18/2013

I meant

Many people with the disease are unaware of the ciguatoxin test.

I meant

You'd rather NOT be diagnosed with this CFS disease.

Replied by Prioris (Fl) on 10/27/2013

Second, a massive explosion of the disease occurred especially between 1960 and 1990.

Third, many outbreaks have been correlated with time of vaccinations. The Polio vaccines were implicated a long time ago.

Fourth, US, Canada, UK and Australia have spearheaded an international cover up spanning over 60 years. There is a long history of disinformation and lies from the governments. They allowed the sickened to drift in the wind.

Fifth, in my survey of patient organizations, I have found virtually all of them are tainted by covert military intelligence operations. They have stood silent about the vaccinations and helped create new generation of victims by not warning mothers about the danger of vaccinations. There has been overwhelming evidence of their damage as they relate to chronic diseases, cancer and autism. Not even GWS moved them when the anthrax vaccine was implicated. The patient organizations are there to keep the origins of the disease secret. There are also fake patients who spread disinformation thru websites and posts.

Sixth, most of the leading doctors on the disease have also been silent about the dangers of vaccinations. I have long concluded that they also are part of a military intelligence operation. The carry out multiple functions such as biological monitors, disinformation, speaking or participate or embrace fake research.

The one common thread across all these organizations and people is their support or neutral stance in regards to vaccines and silence about the devastation that vaccines are doing. To them, it is still a mystery on where the disease came from.

Vaccines have long been part of a depopulation program. The medical charity groups are part of that program to protect the vaccines. Add in all the other powerful institutions and doctors who support the lie and you will have no definitive origin for the disease.

Is ME/CFIDS/CFS infectious?

No. Simply because the origin is from one or more vaccines. If someone got vaccinated then they are already at risk. Until it becomes proven that non vaccinated people can acquire this disease, there is no evidence that it can be acquired.

For people with ME/CFIDS/CFS, infectivity is a major concern especially if they are dating or want to get married. They can tell whoever their dating that their health was damaged by vaccines and that one is only at risk if they got vaccinated. Of course, finding a day where they are well enough to get out of the home to date is a bigger obstacle and those are rare.

If one surveys a large number of people who think they have the disease, there will be a large number of causes hypothesized. For most, they have little idea that a vast disinformation campaign has been waged against them. They also have been effected by that campaign.

Replied by Prioris (Fl) on 01/14/2014

First the same test they use to test people for ciguatera shellfish poison is used.

Second, people with shellfish poisoning exhibit most of the same symptoms as people with CFS. What a sheer coincidence.

Third, nobody is saying that the shellfish ciguatoxin test is now invalid for people with shellfish poison. They are at work trying to come up with test to exclude people with the disease. Ain't that suspicious.

Fourth, molecularly, the shellfish ciguatera toxin is indistinguishable from the one found in CFS except isotope wise.

Fifth, it is claimed that the molecule produced in the liver and a lipid disease so how does the body produce a molecular similar poison in such high quantities. I could understand trace amounts but not very high amounts. It would require a microbe. They want to make it sound like it is a more natural condition.

Sixth it is not surprising that Hokama is claiming “lipid disease” since someone of his scientific statue would likely be hooked into the Black operations given his close links to the government.

Seventh, Duchene is no where to be heard or seen when the CFS people get thrown under the bus by the NIH and CDC. Duchene wants to focus on the vague symptom of fatigue. Can she prove she doesn’t work covertly for the intelligence agencies. There is nothing in her background that says she can be trusted, Duchene’s wasVice President and Co-Chair of the Website Committee Massachusetts CFIDS/ME & FM Association in 1990 but that organization’s credibility bit the dust a long time ago.

Replied by Prioris (Fl) on 01/14/2014

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Ciguatera Toxin a Cause of CFIDS?
by Lucy Dechne, Ph.D.

But did Dr. Hokama actually claim that all the CFIDS/ME patients in his study (as well as the cancer and other patients) actually had ciguatoxin in the blood stream? No, again. The title of his presentation at the International Symposium on Toxins and Natural Products in Okinawa, Japan makes that clear. His talk was, “Acute phase lipids in sera of various diseases: chronic fatigue syndrome, ciguatera, hepatitis, and various cancer with antigenic epitope resembling ciguatoxin as determined with Mab-CTX.” The key words are “acute phase lipids” and “antigenic epitope resembling ciguatoxin.” Apparently Dr. Hokama developed the Membrane Immunobead Assay test for patient sera, using a specific monoclonal antibody for ciguatera toxin (Mab-CTX).

From the abstract of his talk, it is clear that what Dr. Hokama found was that his antibody bound to a lipid substance or substances in the blood. Antibodies cross-react and can bind to multiple substances.

Anyone with allergies has
unfortunately often discovered that fact. So the substance or substances (they might differ in different people) to which the antibody bound might not be ciguatoxin. In fact it is highly likely that the substance wasn’t ciguatoxin. He suggests it is some type of lipid released by the liver.

So what was it and what is the significance of the findings? Both are unknown at this time. Certainly Dr. Hokama’s research is very interesting. Are the substances the antibody bound to in sera the same in each subject? Are the lipid substance or substances bound also toxins or containing toxins? I hope he does more specific research to find out. Ciguatoxin has anticholinesterase activity. So it interferes with the breakdown of acetylcholine. Perhaps the mystery substances bound by the antibody do as well, which would explain some symptoms in some CFIDS/ME patients.

So should CFIDS/ME patients rush out and get Dr. Hokama’s testing for ciguatoxin that the National CFIDS Foundation has advertised? No, since no useful purpose would be served. Even if the test was precisely specific only for ciguatoxin, no treatment for ciguatera poisoning is known. Further, it is quite clear that this antibody test is definitely not specific for ciguatoxin. We don’t know what the other substances are that the antibody binds to, nor if they are even toxins. So save your money and wait for further research. I wish I could say that Dr. Hokama’s findings are a major breakthrough in understanding CFIDS/ME, cancer, hepatitis and cardiovascular disease, but at this stage they clearly aren’t. But they are interesting. I hope Dr. Hokama looks more closely at the chemical structures to which his antibody will bind and researches the significance of these lipid substances he’s already found with that property.

----------------------------------------------------------------------

Prioris

Replied by Prioris (Fl) on 01/14/2014

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Reply from Gail at the NCF on Cigua & Lucy Dechene,
Permssion granted to repost.

Lucy DeChene is a mathematics professor who wrote this for the now defunct Mass. CFIDS Update. This was written to purposely try to discredit me, personally, just as the group, after I resigned when they wouldn't honor a board's unanimous vote, tried many quite vile things to shut us down.

Is it believable that the typical CFIDS patient actually has ciguatera poisoning?

This was never said. What he stated and published in a peer-reviewed medical journal was that patients tested positive to the ciguatera epitope. Actually, there had already been two studies published that showed ciguatera, itself, was the triggering event for ME/CFS but that is not what was found in this work. One article that said this is available on our website.

Well, no. There may be some misidentified CFIDS cases that are ciguatera cases in Hawaii, Australia, Florida and other places where ocean fish such as barracuda that are found off coral reefs are eaten regularly, but such fish are not in a typical person?€™s diet. The only way one can get ciguatera poisoning is by ingesting the toxin, and the toxin is only occasionally found in such fish, which are the top of the food chain. There is no other source. The typical human being will never be exposed to ciguatoxin.

You are not " exposed " to ciguatera. The toxin, which is a ciguatera epitope, is being manufactured in the body by a disease (and not a " syndrome " ) mechanism. This is hardly a new concept. MS has a disease process that manufactures an epitope to saxitoxin (published in the late 90's). However, no further work was ever funded to find out why this was found in MS.

But did Dr. Hokama actually claim that all the CFIDS patients in his study (as well as the cancer and other patients) actually had ciguatoxin in the blood
stream? No, again. The title of his presentation at the International Symposium on Toxins and Natural Products in Okinawa, Japan makes that clear.
His talk was, "Acute phase lipids in sera of various diseases: chronic fatigue syndrome, ciguatera, hepatitis, and various cancer with antigenic epitope
resembling ciguatoxin as determined with Mab-CTX. " The key words are acute phase lipids and antigenic epitope resembling ciguatoxin.

More proof that Lucy should stick to long division! The blood specimens had to be taken apart molecule by molecule to find the minute differences. The
researchers around the world understood this paper when it was published and have all asked the same question: " How could something occur which is so close to nature? " The CDC granted an international blood permit to Dr. Hokama and the University has tested patients from around the world. Intestingly, the ones who first demanded to be tested were physicians who, themselves, had ME/CFS!

Apparently Dr. Hokama developed the Membrane Immunobead Assay test for patient sera, using a specific monoclonal antibody for ciguatera toxin
(Mab-CTX).

Now this sentence shows you how really ridiculous this all is. Dr. Hokama helped to develope the FDA approved test for ciguatera. He went on to develop more sophistocated states for ciguatera. He is the government's expert consultant for the NIH, CDC, and FDA for ciguatera. He is one of a handful worldwide who is a top expert in this area. When you develop a monoclonal antibody assay, you can't get much more specific. NO healthy controls have ever tested positive. For that matter, we know of no primary FMS patients who have tested positive yet we know of not one ME/CFS patient who has not been positive! And not just positive, but so highly positive that Dr. Hokama had to develop a new classification for the higher scores which he dubbed the " CFS profile. " And, yes, the researchers at the pathology department of the Al Burns School of Medicine are already hard at work developing a test for actual ciguatera that will not show positive to CFS.

From the abstract of his talk, it is clear that what Dr. Hokama found was that his antibody bound to a lipid substance or substances in the blood. Antibodies cross-react and can bind to multiple substances. Anyone with allergies has unfortunately often discovered that fact. So the substance or substances (they might differ in different people) to which the antibody bound might not be ciguatoxin. In fact it is highly likely that the substance wasn't ciguatoxin. He suggests it is some type of lipid released by the liver.

So what was it and what is the significance of the findings? Both are unknown at this time.

Yes. That's what happens with every discovery. And that's exactly why we funded him not once more, but twice more to date. The results of his second phase of research has already been submitted to a medical journal and his is writing on the third phase. Both have discovered much more that will help to explain so much about this illness as well as what direction we must go in to understand how to stop this entire process. And that is exactly why doctors who claim they can " treat " this neurotoxin are just using patients and do not really know what they are talking about. We are talking about something so close to ciguatoxin and we know that you can bury somebody with that toxin in their body, dig up the body in 100 years, and still see the toxin but we can't spend our limited energy answering patients who want so much to believe a real treatment is just around the corner. We'd rather find the real treatment based on science and, when we do, it will work on everybody who really has ME/CFS. Perhaps then even those who ridicule us for their own personal reasons will want the treatment as much as I do!

Certainly Dr. Hokama?€™s research is very interesting. Are the substances the antibody bound to in sera the same in each subject? Are the lipid substance or substances bound also toxins or containing toxins? I hope he does more specific research to find out. Ciguatoxin has anticholinesterase activity. So it interferes with the breakdown of acetylcholine. Perhaps the mystery substances bound by the antibody do as well, which would explain some symptoms in some CFIDS patients.

This work will not just explain what happens in some areas (this is NOT the entire answer to the cause, but just one part and we've already funded research into phase 2 of the cause which will be announced in the fall Forum but not online since there has been so much misunderstanding and it's eaten up much time answering the same questions that were answered in other articles that were not online.

So should CFIDS patients rush out and get Dr. Hokama?€™s testing for ciguatoxin that the National CFIDS Foundation has advertised?

We have NEVER advertised any test at any time. We don't even accept any advertisements, unlike Lucy's own newsletter that has now shut down. We refuse to because we do not want to create any conflict of interest. However, it is the ONLY test to date that has come out with what a laboratory considers 100% positive. We were sure that there were some patients that had been
misdiagnosed. We don't feel that way anymore!

No, since no useful purpose would be served. Well, there have been many who have used their test results when their disability has been reviewed. Some have used it for disability applications. The test is not one that can be refuted even though one mathematics professor may think so and the person who posted this old article to a group used to be a volunteer for our group but now spends his time, like Lucy, trying to find fault
with our national group. He resigned when we did not fund research that he felt was important but we have a medical director and well as a committee that decides this and voluntary webmasters do not have input into this process. However, we are still grateful for the work Drew did in the past for The
National CFIDS Foundation.

Even if the test was precisely specific only for ciguatoxin, no treatment for ciguatera poisoning is known. Further, it is quite clear that this antibody test is definitely not specific for ciguatoxin. We don't know what the other substances are that the antibody binds to, nor if they are even toxins. So save your money and wait for further research. I wish I could say that Dr. Hokama's findings are a major breakthrough in understanding CFIDS, cancer, hepatitis and cardiovascular disease, but at this stage they clearly aren't.

The levels found for cancer and hepatitis were far, far lower and have nothing in common with the test results for ME/CFS. Finding what the toxin involved binds to will NOT resolve the problem if it is being manufactured within the body. Instead, this must be attacked at the initial stage but that does not preclude finding out the harm this is doing and finding a real (not a hypothetical) marker as well.

But they are interesting. I hope Dr. Hokama looks more closely at the chemical structures to which his antibody will bind and researches the significance of these lipid substances he's already found with that property.

With the help of donations from patients, the ME/CFS community can expect to find out much more about this work in the very near future. We have also been helped by some other groups with funding our work including one from Australia and, as we pointed out in our newsletter, we are grateful. This work, as our newsletter has stated, was begun by pleading and trying to convince, etc. since it was work we uncovered that was not published nor made available in any way. The fall newsletter will reveal much more that has already been discovered but, like the ciguatera epitope, was not published in any medical journals. We are particularly frustrated and angry as we just lost a board member and, should all the work that has already been discovered been shared with the rest of the world, this death may have been totally unnecessary. (Marilyn , a long-term support group leader, advocate, fundraiser, who put together one of the first conferences on ME/CFS died in August.)

1. Neurotoxin Discovered in Chronic Fatigue Syndrome, National CFIDS Foundation, published on CO-CURE, November 17, 2002.

It may be of interest to patients that the medical journal selected to publish Dr. Hokama's initial paper on this, The Journal of Clinical Laboratory Analysis, is for researchers. Only papers where the entire process is carefully spelled out and can be replicated around the world are accepted for publication in this journal. The second medical journal that will publish on these findings asked Dr. Hokama to submit, The Journal of Toxicology (not yet out) and it may be the first time in history that a medical journal has requested a paper on ME/CFS!

Gail Kansky
President, National CFIDS Foundation, Inc.
http://www.NCF-NET.org