• aidan@lemmy.world
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    7 months ago

    No cure, blood test, or scan usually means its not a clearly defined illness, just a symptom. You don’t say someone having a heart attack and someone shot in the chest have the same syndrome just because they both have chest pain.

    • SomeoneElse@lemmy.ca
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      7 months ago

      There’s a whole bunch of autoimmune diseases that have no cure, no specific blood test and no specific scan to diagnose them - but they are illnesses/diseases. Lupus is just one of them.

      • aidan@lemmy.world
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        7 months ago

        but they are illnesses/diseases.

        They are described as that but that doesn’t make it particularly scientific, or at least how most people define it.

        I’m not saying all illnesses with no cure, blood test, or scan are inaccurately described or diagnosed, but I am saying it’s a pretty good sign. I experience pretty bad Raynaud’s(doctors thought it could’ve been Lupus but I don’t have other symptoms) but that isn’t enough information to describe an illness, because there are many things that could cause that- describing a symptom or group of symptoms as an illness implies there’s some sort of common cause and treatment, other than just treating the symptoms. Until that is found you can’t really know it’s a shared illness, just a shared symptom.

        This is already a major criticism of how mental health disorders are diagnosed

  • cosmic_slate@dmv.social
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    7 months ago

    Some commenters on the Boston.com article were critiquing the methodology used, but according to a footnote on the CDC page, it sounds like this was compiled from a survey question explicitly asking if the person taking the survey was diagnosed by a medical professional.

    NOTES: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome was based on a yes response to the following two survey questions, “Have you ever been told by a doctor or other health professional that you had Chronic Fatigue Syndrome (CFS) or Myalgic Encephalomyelitis (ME)?” and “Do you still have Chronic Fatigue Syndrome (CFS) or ME?” Confidence intervals were calculated using the Korn–Graubard method for complex surveys. Estimates are based on household interviews of a sample of the U.S. civilian noninstitutionalized population

    Looking at the CDC data page about this is interesting. The less urbanized your area was associated with a greater occurrence of having it: https://www.cdc.gov/nchs/products/databriefs/db488.htm#fig5 (among a number of factors). My first question is if this might relate to vaccination rates, but I didn’t see anything mentioning vaccination rates.

    • babypigeon@lemmy.world
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      7 months ago

      Haven’t read the paper yet, but my first thought was that it could be either tick-borne, or stem from a tick-borne illness.

  • hightrix@lemmy.world
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    7 months ago

    Is something that affect 1% of people really not rare? Seems like an odd classification.

    • Pyr_Pressure@lemmy.ca
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      7 months ago

      Ya 1% is pretty rare in my opinion. Ever play a video game trying to get loot with a 1% drop rate? Takes fucking forever.

    • ryathal@sh.itjust.works
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      7 months ago

      You could maybe argue in a medical context it’s just uncommon, but that doesn’t seem headline worthy vs rare.

    • FooBarrington@lemmy.world
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      7 months ago

      It seems like classifications differ between regions. In the US, an illness is rare if it affects fewer than 200,000 Americans. In the EU it’s less than 1 in 2000 (or less than 0.05%).

      So no, 1% isn’t anywhere close to rare.