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A European Research Agenda for Somatic Symptom Disorders, Bodily Distress Disorders, and Functional Disorders, 2018, van der Feltz-Cornelis et al

Discussion in 'Psychosomatic news - ME/CFS and Long Covid' started by Sly Saint, Oct 29, 2018.

  1. Amw66

    Amw66 Senior Member (Voting Rights)

    Messages:
    6,263
    I think @dxrevisionwatch
    explained it previously, and her warnings were that just this scenario would arise

    Edit - as posted by @Sarah above
     
    MSEsperanza and Inara like this.
  2. Mithriel

    Mithriel Senior Member (Voting Rights)

    Messages:
    2,815
    It is worse than that, if you are dealing with real diseases you have to go where the science takes you and you are constrained by facts. If you make it all up you can say what you like, make the "research" as cheap as possible and ignore any results that still go against you in the conclusions. You cannot be contradicted because you continually change the goalposts and use words to mean whatever you want.

    This gives you lots of research which means you get more published, more grants, your university loves you. Politicians love how much money your are going to save them so you gain influence and honours. It is a win, win, win situation.

    Let other poor, honest fools spend lifetimes struggling to find the cause of a disease with null results from well thought out research. The industry of medicine racks in the profits whether the patients suffer or not.
     
    Peter Trewhitt, Sean, rvallee and 3 others like this.
  3. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

    Messages:
    2,855
    Location:
    betwixt and between
    Just would like to point to a different approach to address unexplained illnesses -- first call them "unrecognized", "undiagnosed" or "unidentified" like the doctors of the ZusE Marburg (center for undiagnosed/ unrecognized and rare illnesses) do, and use your imagination, that suffering from an illness which no one is able to diagnose is likely to cause additional "emotional responses".

    Google translation of the ZusE's information for patients here.

    An interview with the center's director Prof. Jürgen Schäfer on "Deutsche Welle":

    https://www.dw.com/en/who-helps-when-symptoms-defy-explanation/av-18895087

    And an article on ZDNet about a particular diagnostic tool they apply among others: with a misleading headline:
    https://www.zdnet.com/article/playi...diagnose-the-most-rare-and-elusive-illnesses/

    There are several centers for "rare diseases" at university hospitals in Germany, but this is the only one addressing unrecognized/ undiagnosed illnesses in general.

    Are there similar centers in other countries?

    (Only a very short interruption of my forum break- the ZusE links have been sleeping in my drafts folder for quite a while – not able to provide more information about the ZuSE at the moment.)
     
    Last edited: Mar 1, 2019
    Snowdrop, inox, rvallee and 2 others like this.
  4. Inara

    Inara Senior Member (Voting Rights)

    Messages:
    2,734
    My personal impression is this is often a farce. Maybe people who have a private health insurance will be treated properly. There were some anecdotes about Marburg which didn't sound too moving.

    Concerning the other centers: I am not sure what to make of them. Tübingen insists on psychological diagnoses (how funny - I bet most of their cases come to them with a psycho diagnosis - and the same doctors from the clinic that laugh at you sit in the center) and Bonn seemed uninterested. Maybe they don't get enough finances. I know Tübingen struggles.

    BUT it is much better than nothing.
     
  5. Trish

    Trish Moderator Staff Member

    Messages:
    51,890
    Location:
    UK
    Another study on this topic:
    Studying ICD-11 Primary Health Care bodily stress syndrome in Brazil: do many functional disorders represent just one syndrome? 2018, Fortes et al
    Thread here
     
    Inara likes this.

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