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    • #19512
      Dagmar Munn
      Keymaster

      “Why aren’t researchers doing more to find a cure?” “Why isn’t more effort and money devoted to this?”

      Do these questions sound familiar? They are in a piece from a fellow columnist who writes for MS News Today. Although ALS and MS are two different conditions, both share the lack of a medical cure and sustainable treatments.

      In his column, Ed Tobias asks, “How Do You Define an MS Cure?” Read it here:https://multiplesclerosisnewstoday.com/news-posts/2021/05/25/defining-ms-cure/

      Ed shares the concept that we need to refine our definition of a cure. To accept the idea that a cure doesn’t mean the restoration of lost neurological function; you can be cured of further attacks on the nervous system, but the damage that is already done won’t necessarily be repaired as part of the cure.

      Do we also need to accept that “long-term remission” may be a better term than “cure” to describe the idea of ALS or MS going away and never coming back?

      Questions for our forum members:
      • Is it appropriate to use the word “cure” when discussing ALS?
      • Does talking about a cure for ALS raise false hopes?
      • Is long-term remission a better term than cure?
      • Should we replace “cure” with “prevent”?

    • #19541
      Bill
      Participant

      I don’t think it’s a big deal whether we define cure. As pALS we all just want something that helps. Sure we’d all like reversals but would love something to really slow down progression or better stop it. I sure don’t think researchers need a definition. As far as prevention , I guess they need to find the cause first!

    • #19545
      Georgi
      Participant

      Early genetic testing to everyone and establishment of database will enhance understanding of ALS. Biomarkers as neurofilaments and MRI for positive ALS testing should replace the current diagnostics by exclusion. These kind of measures will lead to better treatment and possible prevention for those at risk.

      The Italian trial using MRI to show more cortical thinning among pALS treated with Edaravone proves that the time of EMG and 1 year diagnose latency should be over soon. The current lack of treatment is no excuse for such procrastination.

    • #19547

      > Biomarkers as neurofilaments and MRI for positive ALS testing should replace the current diagnostics by exclusion.
      I agree with MRI of the motor area, because there is a specific signal showing iron surcharge in this area.
      But there are pALS that do not display this signal, and neurofilaments are found in most neurodegenerative diseases.

      I agree that making a diagnostic by exclusion is just a comfortable way for the neuros to say “I do not know what you have, please do not come back”.

    • #19548
      David Crellin
      Participant

      From my perspective, words are important and choosing the right word is critical, not just relating to ALS. I would suggest that the abuse of language in recent US politics teaches you this, if that is politics teaches one anything (e.g. alternative truths).

      A quick family poll suggests ‘cure’ implies restoration to health, so halting & reversing ALS.

      ‘Therapy’ implies an amelioration, not necessarily complete return to full health.

      Does it matter? I think so.

      Now, as it happens I am enrolled in an ongoing trial in the UK into advanced MRI scanning and potential bio-markers for ALS. My first three hour plus session in April is to be followed up six month’s later. The hardest part was not swallowing while lying on my back, but the new Philips scanner reduced the time needed to scan my throat etc. Oh, and I fell asleep in the scanner.

      I’ll keep you informed.

    • #19559
      Michael Brewton
      Participant

      I would define a “cure” as restoration back to a normal state.

      A “treatment/therapy” is anything that slows, halts, or slightly improves condition of the pALS.

       

       

    • #19561
      Anonymous
      Inactive

      For ALS, I think the cure would be a permanent cessation of progression. I know that damage has been done, but the identity of what a cure would need to accomplish is to make our bodies stop losing motor neurons. Rehabilitation of what is left afterward is something else I think. It’s like gangrene, and when you stop gangrene, rehabilitating the damage comes afterward.

      This would not necessarily be prevented, as a vaccine for measles prevents measles, but a guarantee that motor neurons stop dying and progression ends. That would be a cure for ALS.

    • #19563
      Duane
      Participant

      Is it appropriate to use the word “cure” when discussing ALS?
      • Does talking about a cure for ALS raise false hopes?
      • Is long-term remission a better term than cure?

      “Cure” is a figment of the imagination.  I believe using the word at this time may raise false hope with some people.  Long term remission is, to my mind, is a better word.

      But this topic is all about semantics.  There is no long term remission or cure or meaningful treatment. We can word play all we want, but it changes nothing.

    • #19564
      Kathy stitz
      Participant

      I don’t think you can compare MS and ALS because MS usually isn’t fatal but ALS is always fatal.

      • #19569
        Dagmar Munn
        Keymaster

        I think it depends on what you mean by “fatal.” ALS patients don’t die of ALS, but from complications caused by ALS (unless your life is cut short by the proverbial beer truck ;-)) According to the National MS Society, on average, an MS patient lives about seven fewer years than someone in the general public, largely because of disease complications or other medical conditions, like cardiovascular disease.

        So, I think we’re about even.

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