New Atmosphere, New Vision: Gibson and Whittemore Kick Off Invest in ME Conference 2016
Mark Berry reports on Dr. Gibson's introduction and Dr. Whittemore's keynote speech, at the 11th Invest in ME International ME Conference in London.
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"Are doctors allowed to give ME patients straightforward info?"

Discussion in 'General ME/CFS Discussion' started by mango, Nov 30, 2015.

  1. mango

    mango Senior Member

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    I read something the other day, and found it very disturbing...

    It's a sentence in a letter written by doctors at a (good, biomedical) ME/CFS and Fibromyalgia specialist clinic to a group of public health politicians, in Sweden. In the paragraph in question they are talking about meetings they have had with Försäkringskassan (the Social Insurance Agency, a government authority) regarding ME/CFS and FM. It says:

    "Mutual problems were discussed. Among other things, it was discussed whether it is allowed to give ME patients straightforward information about the duration of the illness."

    :jaw-drop: o_O :(

    I'm at a loss for words...
     
  2. Esther12

    Esther12 Senior Member

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    Honesty vs 'positivity' on prognosis is something a lot of patients are not given a choice over.
     
  3. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Cancer patients are given prognoses. This enables them to make plans. Why on earth should ME be any different?!
     
  4. Valentijn

    Valentijn Senior Member

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    Because they think we're crazy, and being told we have a serious neurological disorder with a 5% recovery rate will prevent us from being effectively brainwashed long enough to fill out fatigue questionnaires.
     
  5. Woolie

    Woolie Senior Member

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    I'm really angry I was lied to 25 years ago that my condition usually resolves within two years. :mad:
     
  6. SOC

    SOC

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    Paternalistic ass-hats. Since when do they get to make major decisions that affect how I choose to manage the rest of my life? Isn't that MY choice? It is my life after all, not theirs.

    That they can even discuss this without anyone bringing up the fact that they are usurping other people's right to their own life choices appalls me. No, it goes beyond appalling me. It actually nauseates me that they would treat other people like this.
     
  7. Snow Leopard

    Snow Leopard Hibernating

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    Me too! (but more like 15 years ago)
     
  8. Sean

    Sean Senior Member

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    I was told 25 years ago that I could expect it to improve over time.

    Still waiting.
     
  9. Asa

    Asa Senior Member

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    Two forces at play: 1. Groupthink: Do exactly as we (the group) say, as we do, or be shunned. Frozen out. Left in the cold. 2. State experts decide what is best for society. Society is what matters. The State is what matters. Know your place -- you're just another brick in the wall.

    Regarding paternalism:

    "Swedish Big Brother behind lobotomies in the 1940s and 1950s: Sweden was more accepting than the US in its attitude toward lobotomy in the 1940s and 1950s. A possible explanation for this may be the strength of paternalism in Sweden, that is, a greater tendency to make decisions on behalf of the patient in Swedish medical culture than in its American counterpart. This is according to Kenneth Ögren from Umeå University in Sweden..." http://info.adm.umu.se/NYHETER/PressmeddelandeEng.aspx?id=2610

    "Scandinavian hospitals lobotomized 2.5 times as many people per capita as hospitals in the US. Sweden lobotomized at least 4,500 people between 1944 and 1966, mainly women... The Soviet Union banned the practice in 1950 on moral grounds..." https://en.wikipedia.org/wiki/Lobotomy

    EDIT: I've read that at some point (how long ago??) people in Sweden were not allowed to pray at home unless they were supervised by a State priest. I believe Scandinavia is said to have among the highest rates too of the State taking children from their parents and placing them in State care. In recent years too, homeschooling was banned. There was even a politician who advocated for compulsory daycare for children as young as 18 months, I believe. The State knows what's best for you is and has been pervasive for sometime... Troublemakers (i.e. those who don't do as they're told) will be delt with harshly...


    Swedish Paternalism.PNG
     
    Last edited: Dec 1, 2015
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  10. Invisible Woman

    Invisible Woman Senior Member

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    .

    Yeah ' cause it's a really positive experience having your friends, family & employer say - "oh but the doctors said most people recover by themselves in time. I mean if it were a real illness they'd be treating you wouldn't they? Shouldn't you be better by now?"

    Agreed. If they are taking this responsibility from me then perhaps they'd like to take over responsibility for paying my mortgage too!!
     
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  11. sarah darwins

    sarah darwins I told you I was ill

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    I think there's one other force in play: they've got to find something for all these people to do —

    number of psychology students in the uk - source HESA.png
    Note the number doubled in 10 years. Don't know the figures for Sweden, but I imagine it's a similar story. Certainly goes some way to explaining why we in the UK are drowning in psych theorising about disease. The devil finds work for idle hands ...
     
  12. Asa

    Asa Senior Member

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    Very true, @sarah darwins. Also keeps State Insurance employees, lawyers, judges, and support staff employed. Sometime back I saw (to my understanding) that the overwhelming majority of CBT practitioners in the UK were women. Surely this is similar elsewhere? The State Insurance reps I had to deal with were women, their fraudulent evidence was authored by a woman, at least half of the judges were women, and the court records too managed by a woman. So States also get to boast propoganda about how many female professionals there are... What a disturbing joke.
     
  13. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Wow - that's a big jump from 2002/3 to 2003/4. What happened then?
     
  14. A.B.

    A.B. Senior Member

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    Skilled practitioners of mind-body magic know that it's important to avoid legitimising symptoms and avoid anything that suggests that the illness is permanent.
     
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  15. sarah darwins

    sarah darwins I told you I was ill

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    I can't remember when it was that the UK government started committing to 50% (or something like that) of school leavers going into higher education, but it may be involved.

    Overall in that graph, I think the increase in postgrad psych students is very significant (for us). But the growing number of people with any sort of psych degree also makes for a much more receptive climate for the theorising.
     
    Last edited: Dec 1, 2015
  16. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    I do hope that my niece doesn't get drawn into this - she is a psych undergraduate. I have sent her some info about ME. But I can't get any of my family to engage in any discussion about my illness - in 20 years! So I don't even know what they think. They just respond with silence every time I bring it up, or with vague statements that may occasionally sound slightly positive or the opposite. Then it's subject-changing time. :bang-head:
     
  17. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    I tell everybody who tries to convince me it will resolve soon, to back up their claims. That has not happened yet

    It`s really important that we stand up against positivism (lol), cause who would grant funding for researching something that goes away?
     
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  18. SOC

    SOC

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    Holy &^%$#! :eek: That is horrifying. It's like some B-grade futuristic film where an evil empire is mass-producing mind-control drones.
     
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  19. A.B.

    A.B. Senior Member

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    So many psychology students also means that one can sell courses that teach the latest psycho quackery. I think we have already seen how low standards are in the UK when it comes to critical thinking and research.

    It's not just the patients that are getting scammed.
     
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  20. sarah darwins

    sarah darwins I told you I was ill

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    Heh, I hear you. And according to the paper from which I lifted that table the drones are outnumbered only by the MBAs and the ambulance chasers:

    "The number of students studying psychology has steadily increased in recent times. Currently the number of students on undergraduate programmes across the UK is only surpassed by students on business and law degrees."

    Hello, brave new world!
     
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