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-   -   Research via the web . . . ? (https://www.neurotalk.org/als-news-and-research/256853-research-via-web.html)

MuonOne 07-04-2021 11:01 AM

Research via the web . . . ?
 
Maybe the story on the value of the internet versus 'orphan' disease is: there is no story? Prevention, if there is any, precludes the syndrome's existence in a person (where totally preventable). In 2004 discovery was made, via the dataset of the American Cancer Society, use of vitamin e supplements decreased risk of Amyotrophic Lateral Sclerosis onset by more than fifty percent, once the prospective patient reaches ten years on the 'therapy,' which needs no medical prescription and is quite economical. The finding, now fifteen years ago, might have reduced the number of individuals acquiring the syndrome by fifty percent except most patients have no advance knowledge they will achieve the prognosis. Yet, what about familial cases? Such persons have about a 50:50 chance of syndrome onset. Are they taking advantage of the alert? Have their number of cases appreciably dropped? Is the observation valid for familial cases? I found no declarations along the lines of 'even though I reliably consumed elevated levels of vitamin e I incurred the syndrome' or 'my siblings and I elevated our intake of vitamin e and so far we are all still here!' Indeed I can not think of even one individual who represented they substantially increased their vitamin e intake or commented on what their vitamin e intake was before their prognosis. At present, validative intelligence is very weak on nearly every recognized intervention for Amyotrophic Lateral Sclerosis. It seems patients allow the web less opportunity for involvement in their personal lives than they once did, despite the ability to participate anonymously. I think I checked every web forum where one might find such disclosure. Any thoughts why such may be so?

Vitamin E intake and risk of amyotrophic lateral sclerosis
https://onlinelibrary.wiley.com/doi/...1002/ana.20316
published 04 November 2004

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