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    • #12087
      Amanda
      Keymaster

      There are times when I read a research article about what might cause ALS and it leaves me baffled. We’ve heard about genetic links to fALS, repeated head trauma often found in athletes, and there is an article on ALS News Today suggesting that more research needs to take place to consider a link between taking antibiotics and getting ALS. The researchers clearly state that this study is stating a definitive cause of ALS, but stating that it is an area that needs to be studied. Have you read this article? What other theories have you heard or read about suggesting a cause of ALS?

    • #12095
      Glen North
      Participant

      Hi Amanda,

      My diagnosis came right after I had an accident with a drill.  I tore the palm of my right hand quite badly.  It was sewn back up, but I got a bad infection, that I had to be treated with a strong IV antibiotic as well as an oral antibiotic.  My hand healed but I never got my strength back, it steadily weakened, then the ALS diagnosis.  Maybe too much of a coincidence!

      The other trigger I’ve read, is and injury or trauma to a part of the body may trigger it, and it spreads from there.  I had both injury and trauma as well as antibiotics, the perfect storm!

      Glen

    • #12096

      You may refer to this study:

      https://doi.org/10.1111/ene.13986

      I do not think they found a causal link between antibiotics and ALS, what they found is a good correlation. I cite them :

              As a result, even though we did the analyses based on a causal hypothesis, the findings are only suggestive and cannot prove causality.

      But scientists have found correlations between ALS and many things including water bodies and weather!

      In this later case (weather) they thought it is simply because there are more enterovirus (and possibly others) during some seasons than in others.

      As for Glenn, many pALS had some large injury. For me this is more plausible as a cause than antibiotics, at least for a common sense reason: ALS is focal, it starts at one or two precise locations then spreads. it is easy to associate conceptually with an injury. Antibiotics are not focal.

      Another thing is that the causative mechanism of ALS may be irrelevant to find a cure.

      A cure must not only stop the disease, but it should restore functions. And restoring muscles and neurons cells is beyond our current capacities. However such drugs like Nurown are a good step in the right direction.

       

       

    • #12103
      Dagmar Munn
      Keymaster

      I agree with Jean-Pierre: association does not mean causation.

      Unfortunately, many people will read this and have one take: Antibiotics cause ALS. The article is potentially inflammatory to those people fearing medication and antibiotics in general.

      These are direct quotes from the article:
      1. “Although this was a large, nationwide study, the investigators cautioned that the results are only suggestive, and said more evidence is needed before any cause-and-effect relationship can be claimed.”
      2. “[I]t is difficult to disentangle the effect of antibiotics from the effect of the underlying indications for the use of antibiotics, i.e. infections that might be secondary to the underlying ALS disease,” the researchers said.
      3. “That means the findings “are only suggestive and cannot prove causality,” they added.”

      Further, the trend towards using sensationalized headlines (to generate “clicks” or SEO?) show how information can become warped. Many readers only remember the headline and do not take the time to read the full article.

      Example:

      Title of original research – “Antibiotics Use and Risk of Amyotrophic Lateral Sclerosis in Sweden”

      Title of article – “Using Antibiotics May Increase Risk of Developing ALS, Swedish Study Suggests”

      Association does not prove causation. 

    • #12113
      Diana Belland
      Participant

      Jean-Pierre and Dagmar,

      Jean-Pierre comments that “drugs like Nurown are a good step in the right direction.”   I have seen this drug mentioned in various articles like this one:  https://alsnewstoday.com/nurown/  and others.   It certainly looks promising.

      I wondered if either or both of you could tell me more about the drug,i.e.,  the timeline in terms of further trials and FDA approval and ease of administration by the patient.   It sounds as though it requires harvesting of cells from the patient followed by injection into a muscle or into the spinal column.

      Thank you!

    • #12116

      Hi Diana,

      The article that you point out, summarizes well what is important to know about Nurown, at least from my perspective.

      I have no confidential information, it seems to me that sooner or later the FDA would authorize it, hopefully late 2020 or 2021 and only if the phase III trial goes well.

      About ease of administration I think the patient experience is comparable to an epidural administration.

      My guess is that the effect will not be too strong and will not last, because it is a stem cell therapy at the root and stem cells therapies are not well mastered at the moment. Another difficult point is that in ALS neurons and muscle cells are supposed to die, and replacing them is not something that could be done today in the CNS (all hope is not lost as this happens in the PNS).

      But I am not a doctor nor a scientist, and I am not a US citizen so I may not understand subtleties in US healthcare.

      There are posts by a pALS (Matt Bellina) who received three Nurown injections, for example:

      Look Ma, no hands!

      Posted by Matt Bellina on Tuesday, April 30, 2019

      My personal opinion is that this is a step in the right direction, but it will need further improvements and perhaps it will have to be used in combination with other drugs, such as a TDP-43 genetic therapy in order to stop the progression and restore functions.

      Jean-Pierre

       

    • #12118
      Dagmar Munn
      Keymaster

      Clinical trials for Nurown are still open and accepting participants: https://www.als.net/als-research/clinical-trials/321/

      Nurown is a process of taking adult stem cells from the bone marrow of your spine, then over 3 months they grow neuron cells and re-inject them into your spine. These are not new motor neurons nor are they to replace motor neurons – – but to provide support for your existing (working) motor neurons. Every several months you receive another injection.

      I have a friend who is in this trial (Massachusetts site) and I will be keeping tabs on his progress.

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