Phoenix Rising supports the Millions Missing global day of protest
Phoenix Rising is delighted to support the demands being made in the ME/CFS community’s first-ever global day of protest …
Discuss the article on the Forums.

[ELLE] Anecdotes used to promote O'Sullivan, complain she's being trolled

Discussion in 'General ME/CFS News' started by Esther12, Aug 12, 2016.

  1. Esther12

    Esther12

    Messages:
    8,453
    Likes:
    28,549
    Katherine Cheston scanned in a copy of the article:

    pg1.jpg pg2.jpg

    I don't think that the author of this article knows what 'trolling' is.

    I really can't decide whether O'Sullivan is playing a clever political game, or just completely stupid.
     
    barbc56, Bob, Aurator and 12 others like this.
  2. Sean

    Sean Senior Member

    Messages:
    3,248
    Likes:
    17,945
    So she needs "ongoing help" to "live with her illness".

    No cure then? Which strongly implies no explanation either.

    What she really learned was to misinterpret, even deny, her real health situation.

    Not to mention that "ongoing help" is a very convenient source of income, power, and status for the likes of O'Sullivan and therapists.

    :meh:
     
    Neunistiva, barbc56, Bob and 11 others like this.
  3. IreneF

    IreneF Senior Member

    Messages:
    1,550
    Likes:
    2,551
    San Francisco
    All of those links are for pseudoneurological conditions. It's (relatively) easy for neurologists to determine if a condition truly arises from the nervous system, but I don't see how that applies to PEM, for example. I wonder if Sullivan's book deals with non-neurological symptoms.
     
    barbc56 and justy like this.
  4. A.B.

    A.B. Senior Member

    Messages:
    3,732
    Likes:
    23,081
    Way to miss the point. Psychosomatic illness is assumed to exist because lab tests don't show any abnormality. This is the same logic as concluding that astral influences must be the cause since tests are normal. There is no logical connection between the absence of abnormal tests and a specific cause.
     
    Last edited: Aug 13, 2016
    Art Vandelay, barbc56, Bob and 8 others like this.
  5. slysaint

    slysaint Senior Member

    Messages:
    2,129
    Likes:
    11,489
    I don't know how she got away with this; the arrogance. If there is any right to reply:
    "
    Historical examples of psychologizing problems with organic causes

    Lupus, multiple sclerosis, AIDS, and Lyme disease suffered similar fates before “tissue evidence” was available. Patients were belittled by armchair speculators masquerading as scientists. Who among us believes this was helpful? A simple “I don't know” would have been better than specious speculation.

    The authors confuse absence of evidence with evidence of absence. They are not the same. Absence of evidence may reflect insufficient research, inadequate technology, poor methods, flawed paradigms, closed minds, or lack of clinical experience; for example, in 1980, there was no clear evidence that AIDS was viral—blood products were considered “safe.“….

    The chronic fatigue syndrome and fibromyalgia (probably the same disorder) are characterized by considerable suffering and disability. We must not add to that suffering by trivializing patients with “functional” labels. Marginal care inevitably ensues.

    Thomas L. English, M.D.12)"

    taken from: http://mpkb.org/home/alternate/psychosomatic
     
  6. TiredSam

    TiredSam The wise nematode hibernates

    Messages:
    2,689
    Likes:
    21,713
    Germany
    I was hoping that this was going to be another article like the one in the German Brigitte, and it seemed to start well, but unfortunately I had to stop reading at "My 15-year old self wants to jump across the desk and hug her". Anecdotes and revelation instead of evidence? If that's what she's into it's up to her I suppose, just wish such harmful rubbish didn't get published. She seems happy to accept the leap of faith from blushing and having a nervous stomach to psychosomatic causes of disease without question in her eagerness to experience her revelatory moment.

    Some of those factiods down the middle don't ring true either -

    70% of patients who suffer psychsomatic illnesses are women - how can you have 70% of zero and assign a gender to it?

    People with MUS visit their doctor twice as often as other people
    - can we define the control group a bit more specifically than "other people"? Patients with other illnesses? People who aren't ill? If anecdotal evidence is allowed, I haven't been to my Dr for about a year, which means "other people" go every 2 years at the most, which I know isn't true because my neighbour went last week and she hasn't got ME.

    The misdiagnosis rate in people with psychosomatic neurological symptoms is only 4% - Not quite sure I understand what this means, a claim that O'Sullivan and her ilk are only wrong 4% of the time? I'd put her misdiagnosis rate at closer to 100% myself.

    Don't suffer in silence - at last some good advice, ME patients have stopped suffering in silence, and calling it trolling, vexatious or whatever you want will not silence anybody.

    I thought PVFS was less than 6 months and cleared up, so not the same as ME?
     
    barbc56, Hutan, justy and 2 others like this.
  7. A.B.

    A.B. Senior Member

    Messages:
    3,732
    Likes:
    23,081
    Not sure why that is considered important. Some unspoken reference to Freud's hysteria perhaps? In any case, gender differences in disease distribution is nothing extraordinary, 78% of patients with autoimmune diseases are women.
    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2527069/
     
    barbc56, Bob, Kati and 4 others like this.
  8. slysaint

    slysaint Senior Member

    Messages:
    2,129
    Likes:
    11,489
    ALL MADE UP. ?.............yes!
    upload_2016-8-13_10-41-48.png
     
    barbc56, Bob, Hutan and 3 others like this.
  9. Keith Geraghty

    Keith Geraghty Senior Member

    Messages:
    151
    Likes:
    3,217
    the patient in question was clearly suffering from post-viral fatigue and I dont know of any doctor who might advise immedately dropping out of school, this would be something a GP might suggest to a partent and child if going to school was making them much much worse, and GPs would suggest returning to school if symptoms improved - so I dont believe that statement off the bat.

    Second the article really makes me believe the patient was suffering from hyochrondrias, having multiple illness presentations and they clearly suffered from anxiety and depression. Now, OSullivan said before that she and most neurologists have given up on CFS patients, she said she doesnt even see them in clinic anymore, - so very weird to see here now being a champion of a patient with CFS. Clearly CBT may well have helped this patient. This is classic OSullivan territory, its one anecedotal case from OSuillivans case book, but a lot of other random facts thrown in to make a narrative based purely on her beliefs, not clear science with facts. Why complicate a nice story with facts?
     
    Last edited: Aug 13, 2016
    barbc56, Bob, Hutan and 7 others like this.
  10. Valentijn

    Valentijn WE ARE KINA

    Messages:
    14,283
    Likes:
    45,804
    Yes, I thought it was quite odd that she's pushing the ME angle despite admitting to have pretty much no knowledge about it or contact with ME patients. But ME is what got her (negative) attention for her book, so she's pushing that angle instead of a more vulnerable illness where there isn't thousands of papers proving it's a biomedical condition.

    My conclusion is that she's just another attention-seeker who is more concerned with being known and heard than she is with making any real contribution to anything or anyone.
     
    Cheshire, barbc56, Bob and 5 others like this.
  11. TiredSam

    TiredSam The wise nematode hibernates

    Messages:
    2,689
    Likes:
    21,713
    Germany
    Couldn't resist going back to read the rest of it once my HR monitor had stopped beeping, and after reading O'Sullivan pose the following question to herself:

    Was looking forward to seeing how she would answer it. Unfortunately she didn't, so I'm left wondering whether it was rhetorical and she is claiming that ME patients have no typical personality traits (which would be a refreshing breath of fresh air in an otherwise most unsavoury gust) or whether Marina is "that sort of person" and we can just work out the rest for ourselves.
     
    Cheshire, Sean, barbc56 and 7 others like this.
  12. sarah darwins

    sarah darwins I told you I was ill

    Messages:
    2,449
    Likes:
    10,420
    Cornwall, UK
    Another Oliver Sacks wannabe.
     
    barbc56 and TiredSam like this.
  13. Wildcat

    Wildcat

    Messages:
    1,424
    Likes:
    3,657
    .
    I think PDWhite et al know they cannot win the CBT/GET war - so they are backing the popular science books to do their work of popularising belief in psychosomatisation (especially of ME) and mind over matter to an uncritical readership.


    Three popular 'science'/'history' books in the last year (ish) which all have chapters on 'CFS' and all construct ME ('CFS') as psychosomatic, or 'curable' by CBT/GET.

    Suzanne O'Sullivan's 'All in your Head' which won the Wellcome book prize.
    https://www.amazon.co.uk/Its-All-Your-Head-Psychosomatic/dp/0099597853/ref=sr_1_1?s=books&ie=UTF8&qid=1471089292&sr=1-1&keywords=all in your head



    Anna K Schaffner's so called history of 'Exhaustion'
    https://www.amazon.co.uk/Exhaustion-History-Anna-K-Schaffner/dp/0231172303/ref=sr_1_1?s=books&ie=UTF8&qid=1471089106&sr=1-1&keywords=schaffner exhaustion

    .
    And Jo Marchant's 'Cure- A journey into science of Mind over Body', which features an interview with Professor White and an unashamed promotion of PACE.
    https://www.amazon.co.uk/Cure-Journ...857868624/ref=cm_cr_arp_d_product_top?ie=UTF8


    .
    Jo Marchant's 'Cure' is on the shortlist for the Royal Society Science book of the year.
    https://royalsociety.org/grants-schemes-awards/book-prizes/science-books-prize/

    https://www.theguardian.com/books/2...ng-royal-society-science-book-prize-shortlist

    .
     
    Last edited: Aug 13, 2016
  14. sarah darwins

    sarah darwins I told you I was ill

    Messages:
    2,449
    Likes:
    10,420
    Cornwall, UK
    Perfectly expressed.
     
    PennyIA, Sean, barbc56 and 2 others like this.
  15. Snow Leopard

    Snow Leopard Hibernating

    Messages:
    4,613
    Likes:
    12,425
    South Australia
    Have you read the book? As far as all the recent epidemic of books about hysteria and psychosomatic illness, O'Sullivan's book has the most depth and seems the most plausible. To an outsider, to someone who is not scientifically trained (or a patient of the illnesses in question), her book seems plausible and even sympathetic in some respects. To these readers, they think that the treatments that O'Sullivan proposes are effective or that the patients will improve in time anyway. So such a reader will not be worried that patents are being neglected and given ineffective treatments.

    These articles are all about promoting the book/increasing sales.
     
    Cheshire, Sean, barbc56 and 6 others like this.
  16. Wildcat

    Wildcat

    Messages:
    1,424
    Likes:
    3,657
    .
    The promoton of the books ideology as "compassionate", "sympathetic" etc is pure emotional manipulation. There is obviously nothing "compassionate" about constructing serious physical diseases as psychosomatic. As we well know. The media/public do love these books, the reviews are gushing (as they loved Elaine Showalter's 'Hystories' nearly 20 years ago).

    Such books make the 'not ill' feel safe smug and superior.
     
    Last edited: Aug 13, 2016
    Sean, Snow Leopard, barbc56 and 6 others like this.
  17. Aurator

    Aurator Senior Member

    Messages:
    625
    Likes:
    3,077
    I have - all of it. It's instructive to read about the apparently flagrant malingerer and the lady who thinks she's lost her eyesight, but mainly it's instructive to see how eager certain clinicians are to sweep as many patients as possible with problematic conditions into the bottomless dustbin of a psych-diagnosis.

    Books like this succeed partly because large numbers of people like to read books that confirm some of the more fundamental beliefs they happen to already hold: in this case that in most areas of our lives, including our health, there are nearly always easy answers to difficult problems. Although in the case of most of the patients in her book O'Sullivan doesn't demonstrate that her intervention has either cured or even helped the patient, this is clearly a minor detail to most readers that doesn't in the least undermine O'Sullivan's standpoint.
     
  18. worldbackwards

    worldbackwards A unique snowflake

    Messages:
    2,091
    Likes:
    10,354
    Earth
    After a brief flurry of activity when I was first ill, I learned very quickly not to visit my doctor unless I wanted to be patronised and/or sent to a psychiatrist. To link this to ME patients seems fanciful - there is plenty of survey evidence showing that we go years on end without seeing doctors.

    But of course ME patients' neurological signs are marginalised in favour of fatigue, so presumably they aren't contained in this statistic, which in itself is likely to be self reinforcing in the way that all MUPS diagnoses are - "we don't know what's wrong with them, so it must be psychosomatic". Unless they're claiming that there is only a 4% misdiagnosis rate for ME, which is laughable.

    ...because everyone who has them are malingering scumbags intent on wasting your money, rather than getting themselves that good old time religion with Dr. O'Sullivan. You heard it here first. Or not.

    I am tiring of O'Sullivan's 'little old me' routine. Always reminds me of the lyrics to this song:



    All together now - "Poor you, poor you, no one understands you, poor you, poor you..."
     
    meandthecat, Sean, Wildcat and 7 others like this.
  19. aaron_c

    aaron_c Senior Member

    Messages:
    633
    Likes:
    984
    Anyone know where we can comment on the article? The "trolls" (or, as I prefer to think of us, the respectful, evidence-based comentariat) have been summoned...but where do we go?
     
  20. TiredSam

    TiredSam The wise nematode hibernates

    Messages:
    2,689
    Likes:
    21,713
    Germany
    Think it was just in the print version.
     

See more popular forum discussions.

Share This Page