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    • #16748
      Dagmar Munn
      Keymaster

      Calling all our forum members to put on their “science teacher hats” to weigh in on: why some ALS research and news sometimes feels “iffy.”

      For example, who else besides me did a double-take when noting the title of this recent news article: Over-the-Counter Pain Relievers Work to Prevent ALS, Study Suggests.

      It certainly caught my attention, especially reading the first paragraph:

      Use of over-the-counter pain relievers, including acetaminophen and nonsteroidal anti-inflammatory drugs (NSAIDs) like ibuprofen and naproxen, significantly reduced the likelihood of developing amyotrophic lateral sclerosis (ALS), likely by working against inflammatory processes, a small meta-analysis reported.

      Sounds exciting, right? But wait, the final paragraph revealed the truth:

       A number of limitations apply to these findings, the team wrote, because of the small pool of data available for the meta-analysis (three studies), a lack of control for confounding factors, and a lack of specific information on types and doses of NSAIDs used.

      How do you feel about these types of ALS news articles? Are they misleading? Should valuable research time and $$$ be spent on these types of studies?

      Have you come across other research news that failed to deliver? Share the links in our discussion below.

    • #16751
      Dagmar Munn
      Keymaster

      Here is another example – a news item about how high levels of apathy felt by ALS patients create a burden for their caregivers. (https://alsnewstoday.com/news-posts/2019/03/15/caregiver-burden-tied-to-patients-level-of-apathy-in-study/

      I don’t disagree with the premise and am not surprised by the findings. What pushed my buttons was the realization that medical experts are still trying to figure out if having ALS causes patients to feel negative emotions. They researched and came to the conclusion that having ALS causes depression in the 1st year. I felt like raising my hand and saying, “save your time and money. Just ask any of us. Yes, we feel depressed learning we have ALS!” (I wrote more here: https://alsnewstoday.com/columns/2019/03/26/als-depression-link-anxiety-prognosis/)

      Let’s let researchers know we need studies that “move the ball forward” and discover new, novel theories and/or treatments.

    • #16759
      MaryConnolly
      Participant

      I found the article regarding OTC pain relievers to be terribly misleading. And the worst part was that the last paragraph was very telling and revealed the truth—if the reader got to the last paragraph. Maybe authors should have started with the last paragraph first.  I’m really disappointed in ALS News editorial staff for allowing that article to be published. I look to this site for real newsworthy topics based on excellent science, and I’m a little (ok a lot) wondering what value articles like that bring to the table. Spend time on clinical trials e.g. Healey Platform and others taking place in other countries. Perhaps explain the importance of pALS enrolling in that important research and the mechanism of how the experimental drugs work — and yes at the cellular level and in everyday language. It can be done and many of us do it everyday as we take the deep dive to explain the science to our pALS, family and friends. I’m a longtime science educator and my husband was diagnosed in Jan 2020, so we are new to ALS which is a pretty steep learning curve even if one has the science background. That said, I’m grateful to have a forum like this even with its periodic shortcomings.

    • #16760
      Bill
      Participant

      I too read the article in my news feed. I didn’t really have a problem with it because I did indeed read it all. I find any research and data interesting. The article just said that they found a statistical relationship. They honestly said the scope and inability to have data to go further limited it. I guess the problem I see is the target audience as pALS like myself can be desperate for something actionable to help them in these articles. This was not that kind of article. Again found interesting but that’s about it. Should such articles be suppressed? I don’t think so.
      I probably have more trouble when a survivor pALS is quoted and people rush to replicate what they did. My background is engineering and to me data is everything.

    • #16767
      Dagmar Munn
      Keymaster

      Mary – – I understand your frustration… but my beef isn’t against news agencies who report research news. I object to the researchers and their institutions for selecting “easy” studies and benefiting from the funding they received – – without any real benefit going to pALS.

      Here’s an example of a research institution that practices transparency and solicits pALS opinions and input: ALS TDI (ALS Therapy Development Institute). They are holding a community summit on Dec. 4th.

      Virtual 2020 ALS TDI Summit – Friday, December 4, from 1pm to 4pm ET

    • #16773
      Dagmar Munn
      Keymaster

      The problem with some meta-studies is the misguided conclusion of “causation” vs. “association.” I wonder if the pain-reliever study is simply an “association.”

    • #16776

      Dagmar, I like your reaction to this type of news.

      Meta studies in any domain are mostly junk studies.
      The people doing this kind of studies do not care to access to the original datasets, they just read the conclusions of the original studies and accumulate the number of participants in the original studies to have impressive numbers, but really it is just hot air. There is no substance to that kind of studies.

      Another thing is that each year there are 15,000+ scientific articles about ALS only. But each year there are only perhaps 30 or 40 articles that have some interest, and perhaps one article per year which is a breakthrough.

      The way our society do science is very inefficient.

    • #16778
      Dagmar Munn
      Keymaster

      Thank you for your comments Jean-Pierre, I was hoping you’d see this and chime in. Yours is a much better and more complete explanation than what I was trying to say.

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