Thanks, Miesl. I don't remember seeing your posts before, but hope you'll keep contributing. Are you part of the cf community?
Shirley:
OK, I went to glycoscience.org and did a search for cystic fibrosis. The most relevant information I could find was a paper called "Glyconutritionals: Implications in Cystic Fibrosis". This was published in "GlycoScience and Nutrition", which purports to be a journal, but in fact appears to be little more than promotional material put out by Mannatech and its paid associates (real journals do not contain only one article per issue, with the same handful of people showing up as the authors on all the papers). Much of the research this paper cites was also published in "Glycoscience and Nutrition". The authors acknowledge that "there are, as yet, no studies in individuals with cystic fibrosis". What substantive citations the paper does provide either summarize the pathobiology of cystic fibrosis (nothing new) or refer to "numerous published studies [that] attest to the biological activities of mannans and other carbohydrates". No question about that. And the CFTR protein is, in fact, a glycoprotein (that is, a protein, with bits of sugar-based compounds attached to it), as are a great many other membrane proteins. So what? Where is the evidence that eating sugars different from the ones we already get in our food will have any impact on the glycosylation pattern of CFTR or any aspect of physiological function in cf? It sure isn't on the glycoscience.org website, as the authors themselves acknowledge. All I see is pure speculation, and not very compelling speculation, at that.
Furthermore, although you do not seem to be aware of it, Mannatech is, in fact, currently being sued for fraud and invasion of privacy by the mother of a Tay-Sachs child whose picture has been used without her consent and whose case history has been misrepresented in Mannatech promotions, despite her requests that these promotions be halted. The case was filed November 1, 2004, in the Superior Court of the County of Los Angeles. You can read the complaint at <a target=new class=ftalternatingbarlinklarge href="http://www.mlmwatch.org/04C/Mannatech/complaint.html">http://www.mlmwatch.org/04C/Mannatech/complaint.html</a>.
I suspect you sincerely believe that the products you are promoting will do people good. But I assure you the evidence really isn't there. (And yes, I am a scientist, as indicated in my first post on this strand.) There is a long history of people arguing that "it just makes sense" to take various dietary supplements to "boost our immune systems" or provide extra antioxidant power. That's what was said about high doses of various vitamins for decades. But now that the results of controlled trials have come in, it appears that, for most people, too much of even water-soluble vitamins can cause more harm than good.
Please try to remember that the people on this site (as well as on other sites dealing with chronic illnesses) are already overburdened with enormous medical expenses. They really can't afford to be sidetracked into taking expensive sugar supplements for which there is no evidence of effectiveness (or safety) in cf.
Sincerely,
Bambi, mom of Jordan, 16 w cf