A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
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BBC Thinking Allowed on 'Exhaustion'

Discussion in 'General ME/CFS Discussion' started by SamanthaJ, Jul 26, 2017.

  1. SamanthaJ

    SamanthaJ Senior Member

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    Not even sure this is worth a thread but this annoyed me. Just listened to R4's Thinking Allowed, a sociology programme. Today's guest was promoting her book 'Exhaustion - a history'. Neurasthenia and burnout were rather unsympathetically discussed as fashionable terms for the same thing and inevitably there was a bit about CFS. This part was very short, and they sort of tried to be balanced (although 'balance' where one side is total fiction is unbelievably frustrating), the author conceding that it might turn out to be physical! It's so infuriating that ME is even considered an appropriate example in such a context. I mean, they didn't discuss Lupus or other fatigue-causing conditions.

    Anyway, not even sure it's worth an email to the programme as the CFS reference was short and inconsequential (and they would say they'd been balanced), I'm just left depressed and needing to vent that we're still material for this kind of nonsense. That name 'chronic fatigue syndrome' strikes again!

    If anyone's interested the CFS bit is about 22 mins in:

    http://www.bbc.co.uk/programmes/b08yq2bj

    The presenter does make a point of reading out correspondence the following week, if anyone wants to comment. It would be an opportunity to politely say why ME is not just exhaustion. I don't think I've got the brain power today. I certainly need to be in a more polite mood!

    ETA: Compared to all the NICE stuff going on, this is very trivial. But boy is it irritating.
     
    Last edited: Jul 26, 2017
  2. Esther12

    Esther12 Senior Member

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    That Ann Katharina Schaffner just seems to re-hash work from Wessely and Edward Shorter. I don't understand how she's got media attention.

    PS: Thanks for posting about this. Hope to listen soon.
     
  3. TreePerson

    TreePerson Senior Member

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    The BBC are in disgrace for this evenings The Archers. A bad sibling was reported to have gone home to live with and sponge off elderly parents. Purporting to be suffering from "some sort of chronic fatigue". This is dreadful stereotyping. There was a token "oh that can be nasty" – but the damage is done. Really how much longer is this going to be acceptable??
     
  4. Barry53

    Barry53 Senior Member

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  5. mermaid

    mermaid Senior Member

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    Yes, I heard that too and cringed as the sibling was not believed to really have it but making it up - just like some people believe that about those with the real condiiton. I was talking to someone recently at a bus stop who I volunteer with and they said that fibromyalgia was the new trendy illness and they knew some people who didn't really have it. Groan.....
     
  6. JaimeS

    JaimeS Senior Member

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    Talk about a phrase for the new world order.
     
  7. SamanthaJ

    SamanthaJ Senior Member

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    Last edited: Jul 28, 2017
  8. Barry53

    Barry53 Senior Member

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    Ooh yes - I missed that!
     
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  9. Deepwater

    Deepwater Senior Member

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    And it fits into a pattern in BBC drama. I don't know if anyone else has ever tried following BBC TV's Casualty, but over the years it has been a vehicle for the most outrageous BPS libel. At one time the programme featured a nurse who was being violently abused by her evil husband, who made out he had ME and lay about at home all day and when she got home would complain that she didn't do enough for him and 'you people don't even believe in ME' in between knocking her about with gusto. In more recent years the plots have been riddled with teenaged patients whose mothers suffer from Munchausens by Proxy. One week there was even a case of a teenage girl with genuine hysterical paralysis whose crazy mother wouldn't believe the diagnosis. Last time I watched, a couple of weeks ago, two separate mothers of young patients were being shown as irrational - one for refusing vaccinations and the other for keeping her daughter on an organic health food diet. The member of staff and reason eventually won out when the girl obtained the confidence to refuse her mother's proffered banana and eat a chocolate bar instead.
    I've often wondered who the BBC is using for medical advice for these programmes but it is perhaps something that ought to be addressed by the patient community.
     
  10. Esther12

    Esther12 Senior Member

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    I hadn't hgeard of that. Here's a letter exchange with the BBC about it, in case anyone else is interested: https://www.facebook.com/note.php?note_id=461153230587
     
  11. Jenny TipsforME

    Jenny TipsforME Senior Member

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    Thanks for the heads up. I usually fall asleep to the Thinking Allowed podcast on Wednesday/Thursday so I won't listen to this one at bedtime: :mad: isn't close to :sleep:

    BTW @Esther12 the abusive Casualty husband turned out to have muscular dystrophy which was misdiagnosed as ME. This is actually quite an interesting story seeing as they hardly do any tests on us here! I remember because I'd recently had my first creatine kinase test at that time and it was 10x high, which was shrugged off with a retest. They did the same on him and he was rediagnosed in the emergency department (i.e. very unrealistic).

    Does the BBC create ME prejudice or is it just reflecting our culture? Probably both. The File on Four programme was good though.
     
  12. Deepwater

    Deepwater Senior Member

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    That's interesting about the ME husband. I had stopped watching by that time because I couldn't bear it. But I do know the BBC received a lot of angry response to that storyline, so perhaps the muscular dystrophy twist was dreamed up as a way out.
    I'm afraid since then I've found the programme hard to watch so I've only caught it on the rare occasions when I've been with someone else is watching, but every time there is an infuriating psycho plot line; in fact I've more than once quipped at the beginning, in such circumstances that there's going to be Munchausen's by proxy and - lo and behaold! - there has been. But this means that I don't have the sort of detail on the storylines that would be necessary to form the basis of a reasonable complaint. Perhaps I should make a point from now on of watching every week with notepad.
     
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  13. TiredSam

    TiredSam The wise nematode hibernates

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    I had a phase of listening to Thinking Allowed podcasts whilst driving but I had to stop - there were so many women with speech impediments using words like "hegemony" that it was getting pythonesque.
     
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  14. Esther12

    Esther12 Senior Member

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    Here's the CFS section. Evasive BS that totally misrepresents the real problems here.

    I may have missed out some of the parts where they slightly talk over each other, as I couldn't really hear those bits. Hope anyone quoting a section goes back to listen to the original first!

     
    Last edited: Jul 28, 2017
  15. Deepwater

    Deepwater Senior Member

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    Thanks for this quotation. I'm not sure whether Laurie Taylor's third offer was meaning that ME/CFS itself is biological, though. It could very well have been a reference to the BPS theory of biological illness that resolves to leave in its wake deconditioning and fear of exercise. If so, then he may have received his information on the illness purely from the BPS crowd.
    He always comes across on his programme like a nice guy, so perhaps he would be open to other ideas if he actually heard them and heard the evidence for them.
     
  16. Cheshire

    Cheshire Senior Member

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    A critical review of her book:

    https://uttingwolffspouts.com/2016/08/02/the-age-of-ignorance/
     
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  17. SamanthaJ

    SamanthaJ Senior Member

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    When I looked it's still the first one.

     
  18. slysaint

    slysaint Senior Member

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    I was looking for a 'good' review (from our perspective); have just twigged who you are alluding 'Simon' to be:redface:
     
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  19. SamanthaJ

    SamanthaJ Senior Member

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    Yes, I am hopeful he'll be open to constructive criticism. I think they've had people connected to the (supportive) Centre for Welfare Reform on in the past, though not as far as I know about ME.
     
  20. SamanthaJ

    SamanthaJ Senior Member

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    It is difficult to word it clearly - the 'good' reviews are the bad reviews and the 'bad' reviews are the good reviews. I'm only half-joking about 'Simon' - I wouldn't put it past him to be reviewing books on Amazon. Although it is lacking his trademark waffle.
     
    Last edited: Jul 28, 2017
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