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"The social life of diagnosis" by Annemarie Jutel (medical sociologist)

Discussion in 'General ME/CFS discussion' started by Tom Kindlon, Oct 13, 2022.

  1. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)


    Every diagnosis has its own social life which influences other disorders, and the lives of the patients and clinicians involved in the diagnosis. Take for example, long COVID.

    The prevalence of fatigue and the relationship to a previous coronavirus disease 2019 (COVID-19) infection has pushed both clinicians and patients to see long COVID as a distinct entity from other forms of fatigue. To see this type of fatigue as unique to COVID-19 is also to say it is different from medically unexplained syndromes, such as myalgic encephalomyelitis/chronic fatigue syndrome and fibromyalgia. Are they too the result of a reaction to an undetected viral infection? Should we be lumping these conditions, or splitting them? Should we be seeing them as different or the same? Deciding whether this is a post-viral versus a post-COVID-19 condition has significant consequences for how these other conditions are seen, explained and experienced.

    Referring to one condition as COVID-19-induced and another as medically unexplained contributes to what has been referred to as the “prestige” of diseases (here and here). Long COVID becomes somehow more worthy or valorous than say a “banal” chronic fatigue or medically unexplained symptom, historically at the bottom of a hierarchy of diagnoses.

    An interesting topic to me as I went over 5 years without a diagnosis of ME/CFS.

  2. BrightCandle

    BrightCandle Senior Member (Voting Rights)

    ME/CFS(probably) still undiagnosed for 10 years and 2 months, Long hauler since March 2020, caught Covid (probably) in February 2020. Only current standing diagnosis is Migraines and Depression. I am not depressed but I do have constant daily headaches unless I treat myself for ATP energy issues, then they go away.

    Whether Long Covid is more prestigious or not the problem is that doctors don't believe in this entire class of illness, split or joined I don't think has made any difference to the doctors. In research its mattered because what happened with Long Covid is its spent 2 years replicating prior ME/CFS results and the funding is entirely split. While replication is very beneficial its also delayed them getting going on new results and the field is now flooded with new researchers with no idea of the context of the prior research in the area. We will waste billions more of research on replication at this rate.

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