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    • #20528
      Amanda
      Keymaster

      On our forum, as well as other ALS related websites, alternative treatments and vitamins are a hot topic. Every pALS, and their loved ones, want to know what will help. What will slow down or stop the progression? What will make me feel better or stronger? We need to be careful when taking any vitamin or supplement because we don’t want to unknowingly cause our body more stress. What sources of information do you rely on when considering vitamins, supplements or alternative treatments? What do you consider a reliable source of information and where do you find it (include source, web address, book title/author, etc.) What does your research process look like? What specifically do you look at when making a decision?

    • #20532
      David Crellin
      Participant

      Hi Amanda, I’m fortunate in having doctors in my family, friends in pioneering research and others in senior consultant positions. But I base most of my decisions on research papers and reports in the U.S National Library of Medicine http://www.clinicaltrials.gov ; EU Clinical Trials Register http://www.clinicaltrialsregister.eu and many links to reliable external sources from this august ALS News Today.

      So when my rather alternative brother-in-law suggested I take N-Acetyl-Cysteine I read peer-reviewed articles and clinical trial papers and accepted his gift of 120x60mg capsules. I still hammer him on his trust in ‘dubious’ and unreliable sources.

      As two friends, professors of marine bio-chemistry and hydrology, said years ago: never trust someone giving advice outside their specialism. I see so many US ‘board registered’ medics talking absolute rubbish about something they know very little about.

    • #20554
      Amanda
      Keymaster

      David, I agree. It frightens me to think about some of the advice being given from people who are not knowledgeable. When I was in graduate school I learned that research has to be examined closely because it can be easily slanted in many cases. You also have to consider the source of information, and look carefully at the details, especially if you are reviewing a research article.

      When you are dealing with an illness like ALS, I know many people are looking for a miracle cure. We need to be cautious because people will prey on fear and hope.

      David, are you feeling better?

      Amanda

      • #20562
        David Crellin
        Participant

        Thanks, Amanda. Yes, I’m fine. It was just a bad cold – Covid after double Oxford Astra-Zeneca.

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