Reply to Lucy Duchene on Cigua

[Guest guest]

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.â€

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