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Missteps in Creating a Long Haul COVID Case Definition Unintentional stigma is perpetuated by scientists. Vernita Perkins, PhD and Leonard A. Jason

Discussion in 'Long Covid research' started by Sly Saint, Nov 23, 2021.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Lisa108, nick2155, sebaaa and 9 others like this.
  2. DokaGirl

    DokaGirl Senior Member (Voting Rights)

    Agreed, very important to carefully consider time frames and how they affect diagnosis and treatment, as well as the impact on socioeconomic issues for a given population.

    However, on another point, I question whether "most patients" call this disease Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, as these researchers say.

    Early on, I had lots of smart arse/nasty retorts when I told people I have cfs. Some of them only heard "chronic fatigue", and were abusive in official health care and other institutional settings, because they thought CFS is a fabrication.

    I have found this term only brings derision and misunderstanding. It blocks communication.

    I stay as far away as possible from the stigmatizing term Chronic Fatigue Syndrome.

    I understand some people will think differently about the term Chronic Fatigue Syndrome.
    Mithriel, Oni, sebaaa and 5 others like this.
  3. Wilhelmina Jenkins

    Wilhelmina Jenkins Senior Member (Voting Rights)

    Atlanta, GA, USA
    I know that it’s different in the UK, but most people in the US have no idea what ME is. In fact, I would argue that most patients in the US don’t call this disease ME - they just call it CFS still. ME/CFS is the preferred term with researchers, government agencies, and many of the advocates who work with both.

    A year or so ago, Jaime Seltzer did a study of what hashtags were used most often on Twitter to refer to this disease. The answer was still CFS.

    If this disease is as common as we say it is, there are millions of people out there who have no idea what disease they have. If they are able to get a diagnosis at all, it’s probably CFS. Everyone hates the name CFS, myself absolutely included, but it worries me that, if we don’t have a name that people outside of the activist community can recognize, we aren’t reaching people who would greatly benefit by being connected. For me, ME/CFS works to bridge the gap between various communities of patients, clinicians, researchers and government officials until science brings us a better name.
  4. cfsandmore

    cfsandmore Senior Member (Voting Rights)

    In the US, I think we would've been better off to accept SEID as the new term. If I use the acronym ME/CFS with a doctor or specialist physician, I get a big lecture on the meaning of encephalomyelitis. Do physicians in the UK give patients a lecture on the meaning of encephalomyelitis? Is ME accepted better in the UK?
  5. Mij

    Mij Senior Member (Voting Rights)

    I've received more understanding using CFS in Canada.
    cfsandmore, Sean and Peter Trewhitt like this.
  6. EzzieD

    EzzieD Senior Member (Voting Rights)

    I think if that happened to me, I'd have to give the doctor a big lecture on the meaning of fatigue. Because it sure doesn't describe my symptoms. Whereas encephalomyelitis feels like what I experience, even if there's no routine lab test result to prove it.
  7. Snow Leopard

    Snow Leopard Senior Member (Voting Rights)

    Yes, ME is still very much a UK/Ireland thing. It isn't used much in Australia either. Worse still, non-English speaking countries end up getting badly translated versions of "Chronic Fatigue" that sound more like "ongoing tiredness syndrome". :(

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