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Co-creating recovery in CFS/ME: A reflexive exploration of a Rebuilding your Life programme

Discussion in 'PsychoSocial ME/CFS Research' started by Esther12, Nov 5, 2017.

  1. Esther12

    Esther12 Senior Member (Voting Rights)

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    LOL at 'it just is'.

    What a perfect response to scepticism.
     
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  2. Snowdrop

    Snowdrop Established Member (Voting Rights)

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    Oooo, I've got this one.

    Cruella de Ville
     
  3. Valentijn

    Valentijn Moderator Staff Member

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    How do these idiots get anyone to take them seriously? How does the NHS appoint Hilly Raphael Quigley as the clinical lead of Oxfordshire CFS services, despite that she has no apparent qualifications, beyond taking a transdisciplinary "Social Sculpture" course where artistic bullshit gets inflicted upon scientific topics? It's just absurd.
     
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  4. chrisb

    chrisb Senior Member (Voting Rights)

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    I take it that that is a compliment about their being so compliant with official policy.
     
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  5. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    With respect I think you are missing my point. I think Valentijn's post #36 indicates what I meant.
    I have lots of girlie scientist friends - of course. Jo Cambridge has a pink spectacle case and a purple hair brush on her desk and loves riding ponies. But you will never find her writing like this. This is a deliberate attempt to curry favour with a self-defined girlie-science culture of 'qualitative research' that emerged in the late 1980s. The assumption is that the supervisors and thesis examiners will lap it up. And not all girlie-science advocates are female, I agree. There are some strange male hangers on. Girlie-science is an insult both to women and to girlie people of both sexes, but it is not of my making - it is of their making. Girlieness, just like machismo, may be admirable in personal life but the business of science and the Houses of Parliament can do without them respectively.
     
  6. Trish

    Trish Senior Member (Voting Rights)

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    I must admit I was a bit uncomfortable with your use of the word 'girlie' in this context. The problem is not your intention, or the substance of your comment about silly nonsense being promoted as serious treatments. I'm sure we all agree there is no place for such unscientific drivel in the treatment of any illness, physical or mental.

    My problem is that, even if you don't intend it, the word 'girly' to describe such drivel has a gender specific origin and commonly accepted meaning. And the fact that you say you intended it to include men who espouse this drivel doesn't really help, as it could, in common parlance, be taken to mean effeminate which may also cause offence to some.

    How about using a non gender-specific word such as 'drippy' or 'airy fairy' instead of 'girly'. It might be more accurate, since, as you say, many of us serious scientific types also have some 'girly' traits or tastes.

    Actually I think it's far more sinister than being merely 'girly' or 'silly' or 'drippy' or 'airy fairy'. I think it is a dangerous process of mind control being inflicted on unwitting sick people under the guise of loving kindness by people with no understanding of either the nature of the illness or the possible serious negative psychological and physical effects of what they are doing.
     
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  7. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Fair comment, @Trish, but there is no doubt that, as Valentijn said, there is an implicit aspect of 'girl power' in all this. There certainly was when I was research advisor to our physiotherapists in the 1980s. It became clear that my resistance to vacuous qualitative research was seen as male chauvinist.

    I also think there is a difference between the pernicious attitude of mind that you mention, which is shared by a number of well known male psychiatrists and this particular style of 'science'-writing. Peter White and Michael Sharpe do not write like this. My comment was about the writing style, not the techniques being described.
     
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  8. Trish

    Trish Senior Member (Voting Rights)

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    Fair points.
     
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  9. Inara

    Inara Senior Member (Voting Rights)

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    When I read @Jonathan Edwards' "girlie sytle" post I 'painted' a short video in my mind. I really had to laugh. Plus the unicorn, and then a pink one.
    Because, when I read that leaflet, especially those narcisstic 'poems', and the poster and saw those pictures, I felt like "what a togetherness, how wonderrrrful", yuk! Please, nothing against togetherness and real friendship - but this setting is...well...it's not for me.

    I am sure this comparison was not meant in a sexistic manner. I told myself: "Let's first assume the good, I am sure it's not meant like that - but YOU interpret it that way. It actually is really funny and describes exactly what you thought."

    I didn't know it's an insider...

    At least I will link RyL with running girls in nightgowns and pink unicorns, and it's always a good laugh. Thanks for that :)

    (By the way, sometimes "girlieness" is a fine thing, like being childish.)
     
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  10. Solstice

    Solstice Established Member

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    They try even harder and get even sicker. Atleast that's what happened in my case. When finally discovering this sort of treatment is a load of bollocks and I shouldn't be blaming myself for not getting better it was as if a huge weight was lifted from my shoulders.
     
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  11. Trish

    Trish Senior Member (Voting Rights)

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    I mentioned this study earlier in this thread.

    A quick reminder of the outcome:

    Since I hadn't heard for quite a while, I assumed nothing would happen.

    Today I have just received from the University of Southampton FOI officer an e-mail turning down my request for the data on the grounds that it cannot be suitably anonymised so individuals can't be identified.

    They have treated it as a FOI request, and give me details of what to do to appeal.

    My question is, shall I pursue it further?

    They do say Claire McDermott, the lead researcher is willing to communicate further with me.

    I have two reasons to pursue this - first, it's happening in my area, and presumably this is the only thing my local service can now offer me if I need specialist help, which appals me. Second, from the other information in this thread, it appears their ideas are being used as the basis for higher degrees, and presumably will give the practitioners and those who employ them apparent legitimacy for their methods.

    Suggestions please.
     
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  12. 2kidswithME

    2kidswithME New Member

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    Hilly is no longer with the Oxfordshire ME service.

    I did have occasion to meet her when my daughter was referred to the service several years ago. After a long wait hilly came for a home visit. In it she said something to the effect that if E would increase activity in one area this would increase overall energy in other areas. I was astonished, and pretty experienced by then, so I followed up this statement with a query by letter asking for the research to support this statement. She never responded.

    The visit was long and unhelpful and daughter was meant to come up with targets to work on and they would then talk by phone, which daughter was not comfortable with. In the end we bowed out as it was clear this was not going to work for any sort of support.
     
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  13. 2kidswithME

    2kidswithME New Member

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    The last GP with special interest has retired and they will not be replacing her as it was only a one day per week post so not cost effective. We in Oxfordshire ME Group for Action (OMEGA without the hyphen) are in conversation with the service but don’t have much say as to how it is run. One of the therapists is reported to be quite helpful, but waiting times are currently about 20 weeks.

    PK, current OMEGA chair
     
    Last edited: Nov 16, 2017
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  14. Daisybell

    Daisybell Senior Member (Voting Rights)

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    @Trish I think I would try to open up conversation with the lead researcher.... if there is a way to make this a positive experience for you and for her, it perhaps has the best chance of effecting change for the better... good luck!
     
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  15. Esther12

    Esther12 Senior Member (Voting Rights)

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    Did they interpret it as you asking for recordings of interview with patients, etc, or just the outcome data? What info did you want to request?
     
  16. Scarecrow

    Scarecrow Senior Member (Voting Rights)

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    I remember her. She sat at my table at the first CMRC conference three years ago. She waffled endlessly about this feasibility study and I couldn't make head nor tail what she was talking about, except that it involved visiting severe patients at home. God help them, I thought.

    Have a look at page 4 of this document. Did you know about the NLP?

    The intention was to recruit 20 patients but I see from your link that they only managed to get 12.

     
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  17. meandthecat

    meandthecat Established Member

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    Colonialism - the policy or practice of acquiring full or partial political control over another country, occupying it with settlers, and exploiting it economically.

    Since first falling into this rabbit hole I have felt like the native being lectured to by the district officer, someone from another world who can return there whenever they want. No attempt at understanding, Good Lord no, can't risk going native.

    It now feels as if the adults have left the room and, in the UK at least, ME has become the sandpit for the children.
     
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  18. Sbag

    Sbag Established Member (Voting Rights)

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    I can't find any published results
     
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  19. Trish

    Trish Senior Member (Voting Rights)

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  20. Scarecrow

    Scarecrow Senior Member (Voting Rights)

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    @Sbag it's on pages 2 and 3 of the link @Trish gave. It barely qualifies as results, though. More of a sketch.
     
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