• HobbitFoot @thelemmy.club
    link
    fedilink
    English
    arrow-up
    18
    ·
    9 hours ago

    CFS is a syndrome rather than a disease because, until recently, it only presented as symptoms instead of as an identifiable problem with a person. I know that a some people who get diagnosed for CFS get later diagnoses as neurological disorders like multiple sclerosis.

    It sounds like the more powerful MRI scanners are seeing inflammation in the rest of those suffering from CFS.

    That would mean CFS is a lifelong degenerative condition.

    • Neurologist@mander.xyz
      link
      fedilink
      English
      arrow-up
      21
      arrow-down
      1
      ·
      edit-2
      8 hours ago

      Hey I’m a researcher who works on ME (in the past called CFS).

      ME/CFS is currently classified as a disease/biological illness according to the CDC.

      ME is a disease state in itself. We don’t know much about it, but it can’t be explained by other diagnoses, as the defining factor, neuro-immune abnormalities including immune activation showing up post exertion is unique to it. You’re completely right that we don’t yet have a reliable biomarker. We have a test that differentiates from healthy controls, but it was discontinued for ethical reasons because conducting the test leads to a sometimes permanent worsening of the illness.

      In the past it’s been mixed up and jumbled a lot, but the picture is getting clearer.

      There have been a few case reports of degenerative forms of the illness. But in general it takes a more classical relapsing remitting pattern. Although even in less bad stages some patients are severely functionally disabled, even bedridden and tubefed. It has a really wide range of severities with the least severely affected able to work part time and walk and travel, while the most severe might not even be able to communicate.

      • HobbitFoot @thelemmy.club
        link
        fedilink
        English
        arrow-up
        2
        ·
        7 hours ago

        It looks like the state of the art has advanced since the last time I was exposed to it. Thanks for the clarification.

    • Varyk@sh.itjust.works
      link
      fedilink
      arrow-up
      2
      arrow-down
      1
      ·
      8 hours ago

      this is the extent of what I knew about CFS, I never heard of ME, I thought CFE was still a collection of symptoms that didn’t even indicate a single underlying syndrome.

      I like the progress, clearly seeing brain stem inflammation sounds like comic book talk from 20 years ago.

      they’re going to see inflamed dendrites next.

      oh but isn’t clogged dendrites how they identify multiple sclerosis already?

      clearly I have to read more about this. catch up a bit.

      thanks for the explanation.

      • lemonmelon@lemmy.world
        link
        fedilink
        arrow-up
        2
        ·
        1 hour ago

        A collection of symptoms is a syndrome. Once there is a known definite cause, reclassification as a disease can take place. Lay misuse of the terms and reluctance to adopt updated designations have aided in a loss of distinction in what they refer to.

        There is something else entirely to be said for how quickly one can progress from the disbelief of a particular diagnosis as anything beyond a punchline to descanting over the marvels of modern medicine as they relate to futher study of the mechanisms. If nothing else, it’s a great reminder of how much information is available to us on a whim.

      • HobbitFoot @thelemmy.club
        link
        fedilink
        English
        arrow-up
        5
        ·
        8 hours ago

        My understanding is that MS is usually defined by the deterioration of the myelin sheath in brain cells which can be detected through MRI’s.

        • Varyk@sh.itjust.works
          link
          fedilink
          arrow-up
          2
          arrow-down
          1
          ·
          7 hours ago

          it is, and they can take pictures of the inflamed dendrites and axons showing where they’re clogged, so I was wondering how much smaller these substructures in the brain stem are than dendrites and axons that neurons travel through, which are pretty freaking small and we’ve had pictures of for at least a couple decades now.

          oh or maybe those were microscope slides and they’re saying now we can microscopically look at this stuff without having to cut into it.