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  • Red flags to know to avoid ALS scammers – – ALS Awareness Month 2024

    Posted by Dagmar on May 8, 2024 at 1:01 am

    “ALS Tips & News You Can Use”

    We know that newly diagnosed ALS patients and their families are well “aware” of ALS. Rather, they often ask for help navigating the ups and downs of living with the condition. So, for ALS Awareness Month, our forum moderators have created “ALS Tips & News You Can Use.” It’s a collection of up-to-date ALS information, resources, and tips.  Forum members are invited to comment and share their suggestions on each topic posted. Let’s help each other learn how to live with ALS.

    Red flags to know to avoid ALS scammers:

    ALS patients and those with other incurable diseases often self-experiment with alternative and off-label treatments (AOTs) they find on the Internet. Information about these can be incomplete or inaccurate, making patients overestimate the potential benefits and underestimate the risks. 

    Individual physicians and ALSUntangled.com can be valuable resources for helping patients make more informed decisions about Internet AOTs. When these resources are unavailable, patients can look for the “ten red flags.” The more of these that are present, the more wary patients should be.

    Read more about this here: https://www.tandfonline.com/doi/full/10.1080/21678421.2020.1765518

    “ALSUntangled 56: “Ten red flags”-things to be wary of in alternative or off-label products”

    1. Large out-of-pocket costs.
    2. Advertised as effective for multiple incurable conditions with different causes.
    3. Lack of safety and scientific oversight.
    4. Absent or limited informed consent process.
    5. Lack of an evidenced mechanism by which the intervention might help.
    6. Absence of regularly measured validated outcomes.
    7. Vague or no plan to present outcomes for peer review.
    8. The only evidence of benefits is anecdotes.
    9. Proponents have no relative training, presentations, or publications.
    10. Proponents portray themselves as victims and advise “divorce” from mainstream doctors.

    What else can you add to this list?

    Dagmar replied 1 month, 1 week ago 1 Member · 1 Reply
  • 1 Reply
  • Dagmar

    Member
    May 8, 2024 at 12:56 pm

    The random emails I receive in the comments on my blog, or reading posts in Facebook groups – – where the writer says they had ALS but were “miraculously” cured by taking an obscure herbal supplement. Or by visiting with a Dr. whose name is a bunch of consonants! Who falls for these scammer’s stories?

    I wrote a humorous blog post about so-called ALS “miracle cures” – https://alsandwellness.blogspot.com/2016/04/auntie-ellis-gets-cured-als-humor.html

    Hope it brings a chuckle, but it’s also an important reminder to avoid false promises.

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