Neurological conditions
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I feel ignored/stigma

Francis_theythemFrancis_theythem Member Posts: 120 Pioneering
I feel completely ignored by my lecturer. I literally told him that chronic fatigue and referring to ME as chronic fatigue syndrome is problematic and seen as stigmatising by much of the patient community and activists. And also CFS and ME are beginning to be seen as different conditions altogether so it's not even accurate - which I told him too. AND HE IS STILL USING CFS TO REFER TO ME. I told him about my concerns 2 weeks ago, he hasn't changed anything and I feel so stigmatised and ignored. This was 10 minutes in.


  • Cher_ScopeCher_Scope Posts: 4,025

    Scope community team

    edited November 2020
    How bizarre @Francis_theythem

    Funnily enough, I had a similar thing at university with a lecturer repeatedly saying I had Irritable Bowel Syndrome (IBS) rather than Inflammatory Bowel Disease (IBD).  This annoyed me because to overlap/confuse them underplays the severity of IBD and the very different presentation.  I can only think it stems from a lack of awareness.

    If it's causing you distress, I'd consider a couple of things.  Do you have a lecturer/supervisor that you have a good relationship with and feel that you can trust?  If so, perhaps bring it up with them and ask for advice.  Also, maybe email the lecturer in question emphasising your points and feelings to reinforce how much their language impacts you.

    How is uni going otherwise?  Good I hope!
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  • Francis_theythemFrancis_theythem Member Posts: 120 Pioneering
    I told him I was having a rough time before the seminar and we just spoke briefly before he put the other in break out rooms, and referred to me being tired and I was thinking "but I TOLD you it's not just being tired". I mean, it's just him. The person doing the research is well versed in the intricacies of ME. I might talk to her about it, subtly.
    He's pretty caring though. He asked if I have had someone to care for me during my crash and that he was sorry I had such a rough week. So I think he's just ignorant. But I feel very frustrated that I told him about the stigma, that it's not just fatigue etc but he hasn't really changed how he speaks and thinks about it. He validates the actual condition and doesn't think it's psychologically caused so at least he avoids that.
    That must have been horrible - I once considered I had IBS so I'm vaguely familiar with the difference - that must have been frustrating too.

  • Cher_ScopeCher_Scope Posts: 4,025

    Scope community team

    No, I completely understand.  It would rankle me too! 

    I'd definitely mention it to the research bod, just for some pointers in-case it carries on.  It sounds like he means well overall but unfortunately keeps putting his foot in it  :|
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  • Francis_theythemFrancis_theythem Member Posts: 120 Pioneering
    For the seminar people were using chronic fatigue syndrome and chronic fatigue interchangeably. *sighs* And here lieth the stigma. I warned him this would happen. He didn't even refer to it as CFS/ME when I asked him to.
  • chiariedschiarieds Community Co-Production Group Posts: 9,132 Disability Gamechanger
    edited November 2020
    Hi @Francis_theythem - I'm sure I would feel the same in your situation, & it seems to me that a lecturer saying this is unfortunately perpetuating an inaccuracy, which others might take on as fact.
    I had a physiology lecturer who was sometimes inaccurate, & I just had to say something as the other students were making notes from what she said. She would ask me to go to the staffroom after lectures & get out her physiology textbook, find I was correct, then ask me to go & tell the other students. We had an uneasy time of it for a while, including when she got so frustrated she once kicked my chair from underneath me! We grew to respect each other however, & she wrote a job referral for me before my finals.
    Years later, when I felt there was an association between EDS & Chiari 1 Malformation, & Drs. listened politely but didn't agree, I decided to somewhat fight them on their own grounds. So I wrote a review of the medical literature with 48 references to medical papers as to why this association was likely, which a Professor of rheumatology took seriously.
    This latter approach comes to mind as a possible way for you to properly get this lecturer's attention. After you first mentioned this I looked on a ME website, & the work is already done for you if you think this might work by emailing him medical evidence. I've been having a good look again, so please see:
    & go to section 1. Nomenclature and definition on p5. I felt the following were informative:
    Carruthers BM et al (2011)
    Goudsmit EM Shepherd C et al (2009)
    Institute of Medicine (2015) perhaps, as they propose systemic exertion intolerance disease (SEID) as a better name, but do say, 'the term myalgic encephalomyelitis does not accurately describe this illness, and the term chronic fatigue syndrome can result in trivialization and stigmatization for patients afflicted with this illness.'
    Jason LA (2015) Reflections on the Institute of Medicine's SEID especially para 2 in the Name Change section
    Twisk FNM (2019) abstract only freely available.
    I'm sure you could find other papers too (my 48 references was perhaps too much!), but, if you have a look at the above, perhaps you would find they should get your point across. Hope this helps, or gives you some ideas; you could run it past the research lady first.

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