Has anyone heard of Apoaequorin?

[hefsnapp]

Quincy Bioscience is conducting a study called the HOPE Trials to improve the quality of life for individuals suffering from a wide array of debilitating conditions linked by a common cause, a mismanagement of calcium at the cellular level. HOPE Trials research consists of a variety of human trials measuring the effect of apoaequorin, a new dietary supplement ingredient, on cognitive functioning and quality of life. I have decided to enroll in this study myself. Has anyone heard of this or maybe taken this supplement?

[Redwings]

I have two thoughts. First, since your post is virtually a word-for-word copy of the marketing language off the company's website, you don't have much credibility as an unbiased third-party poster. It's always very suspicious when someone joins a forum and soon after starts mentioning, or outright tries to sell, products like nutiritional supplements.

Second, the trials are set up to look meaningful and legitimate. But they're not actual clinical studies. The "studies" are no more than a tabulation of questionnaires sent to the people who have taken the supplement asking how they feel after taking their "product." A statistical analysis of people's anecdotal reports is still just a list of unvalidated anecdotal reports, with no unbiased scientific relevance.

The illusion of setting up this "study" with overly broad inclusion criteria (i.e., "diagnosis of MS" and "ability to complete questionnaires") and exclusion criteria that appear to be scientific is an obvious attempt to mislead people into believing this "trial" is more than it is. What a clever way for the manufacturer to give people their product for free and get "testimonials" by way of self-reports.

Even though this study will be using Quality of Life questionnaires such as the MSQOL-54, MFIS, and MSIS-29, the "trial" conditions are so loose that it will be a stretch to definitively attribute any changes to the "product." And although there's a questionnaire to fill out to join the "trial," it doesn't appear as if there will be any effort made by the company to verify the qualification information supplied by the applicants. It appears that anyone can fraudulently get into the trial by online application by saying anything that gets them accepted, which can completely contaminate and invalidate the data.

The "trial" has no more legitimacy than any marketing survey for any product. And the results won't be valid for anything other than marketing -- "four out of five people prefer..." There are legitimate medical studies that are conducted by survey, but they're more tightly controlled and always subject to the same doubts about the reliability of self-reports.

Anyone who wants to "participate in a study" by this company should be aware that they're participating in a marketing survey of opinions, not a medical trial of scientific relevance.

[hefsnapp]

Thanks for the in depth information. You know we all hope for some kind of miracle to help us. It is a shame how companies will go about trying to market a product. Your message comes across to me like you are angry that I even posted this question just to get some input. I thought that that was the purpose of these boards.

[Sequoia]

Thanks for the in depth information. You know we all hope for some kind of miracle to help us. It is a shame how companies will go about trying to market a product. Your message comes across to me like you are angry that I even posted this question just to get some input. I thought that that was the purpose of these boards.

Hefsnapp, you have to understand that MS boards are frequently subjected to come-ons from people trying to sell "miraculous" products, so we're a little touchy on the subject.

Redwings' comments on the study seem spot on to me. There's no reason not to participate in it if you want to, but it's not going to yield any solid scientific evidence.

All of that being said, Apoaequorin does sound interesting and possibly beneficial for people with MS. I'll be researching it further myself.

[Redwings]

Your message comes across to me like you are angry that I even posted this question just to get some input. I thought that that was the purpose of these boards.

Angry? No, personally I don't care one way or the other about the product. I do care about honesty, and the wording of your post is suspicious, even if it wasn't intentional. Someone just casually looking into the trial could easily be misled. That bothers me.

I, in turn, have to ask why you're so disturbed that the details about the "study" were brought to light. It would seem that anyone who's thinking of participating would be interested in the details of what they'd be getting involved in rather than being offended by them.

It must be remembered that anyone who posts in a public forum should be prepared to deal with whatever responses they get -- even if they don't like them -- without being so ungracious as to criticize the very answers that they asked for. Anyone who responds has just as much right to express their opinion as you do. That's the purpose of a forum.

[hefsnapp]

Got the shipment of apoaequorin. I guess I'll start tomorrow! What can it hurt?

[ANGELTODO]

Apoaequorin

I also have signed up for it after horrible side effects from both Rebif & Avonex,Im ready for a pill. Fingers crossed !! Im finally looking forward to something new that isnt an injection.If it doesnt work at least it wont cause the side effects of those drugs!!!!!!

[Sequoia]

I also have signed up for it after horrible side effects from both Rebif & Avonex,Im ready for a pill. Fingers crossed !! Im finally looking forward to something new that isnt an injection.If it doesnt work at least it wont cause the side effects of those drugs!!!!!!

Apoaequorin is not an alternative to Rebif & Avonex. Its purpose is to "improve the quality of life" of people with MS...not to slow or stop the progression of the disease. In other words, no matter how successful it may turn out to be at its stated purpose, it is not, and will not be, a DMD.

If you want "something new that isn't an injection," why not try Gilenya? It's in pill form and has been thoroughly researched (as much as is possible for a relatively new med).

Personally, I wouldn't consider Apoaequorin unless/until there is thorough, well-designed research data to prove its efficacy for MS.

Or, if you don't want Gilenya, how about LDN? Although there isn't much research about it (because it's off patent now and there's no incentive for the drug companies to fund research studies), there's a significant body of anecdotal evidence supporting its effectiveness. LDN comes in pill form, too.