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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Reducing DNA Rates and Increasing Positive Contacts in an Outpatient Chronic Fatigue Service

Discussion in 'Latest ME/CFS Research' started by Dolphin, Jun 20, 2017.

  1. Dolphin

    Dolphin Senior Member

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    Free full text: http://qir.bmj.com/content/6/1/u212876.w5262.full

     
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  2. A.B.

    A.B. Senior Member

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    What's interesting about this?
     
  3. Dolphin

    Dolphin Senior Member

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    I don't know whether there is anything interesting. I thought I would leave it to others to read the full text and decide.
     
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  4. A.B.

    A.B. Senior Member

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    Okay, the only mildly interesting thing, for me at least, was

    I wonder why. Could it be that patients are becoming better informed and have less faith in the offered treatments?

    No reference is given, which probably means that they are trying to infer causality and reason about treatment effectiveness under circumstances where this is impossible (outside of a clinical trial).

    Refers to the PACE trial. Actually it showed that these treatments don't work and can be accurately described as placebo treatment.
     
    Last edited: Jun 20, 2017
  5. Countrygirl

    Countrygirl ME is not MUS

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    I wonder if they have considered whether sending patients questionnaires to complete which make it clear they regard their patients as fruitcakes has any influence on their intended victim's enthusiasm to sign up for a course in CBT and GET and a jolly session with a psychologist.....................and 12 sessions of group therapy?.

    Beside me as I type is a bundle of forms for me to fill in from such a clinic. They want to know whether I have the 'confidence' to stop my 'fatigue' from interfering in my daily activities; whether I have the 'confidence' to keep my 'emotional distress' under control; whether I have the 'confidence' to stop my symptoms from interfering in my daily activities; and whether I have the 'confidence' to reduce the number of times I bother a doctor.

    With questions such as the above, do they seriously expect people with this illness to attend their fruitloop clinics?

    The questions are not only insulting but they clearly show a total lack of understanding of this devastating illness by the people who staff the clinics.

    It would be a service to ME patients if they closed them down. They do more harm than good.
     
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  6. Chrisb

    Chrisb Senior Member

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    @Countrygirl On the question of the forms which were sent to you for completion, is it known whether this is a standardised form used nationally, or is it regional? It would be interesting to know who was on the committee responsible for their design and dissemination, and why they thought these questions relevant.
     
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  7. Snowdrop

    Snowdrop Rebel without a biscuit

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    @Countrygirl

    Maybe we can code name them FL clinics from now on. I'm all for it. Either that or Coco Puffs. ;)

    PS The stuff you quoted is such patronising twaddle I don't know where to begin. The attitude borders on pathology.
     
  8. Countrygirl

    Countrygirl ME is not MUS

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    I don't know the answer to that, @Chrisb except when I saw Prof Pinching at his clinic 18 years ago I wasn't asked such patronising nonsense. We need someone who has recently attended one of the other fruitloop clinics to tell us if they have similar forms to fill in.

    I am amazed that they think it is acceptable to insult people which such twaddle.
     
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  9. Dolphin

    Dolphin Senior Member

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    Back in 2007 I saved this list of what was the minimum data set that the clinics/services should each collect. I have no idea whether the list has changed or not.

    http://www.cfspod.net/Assessment Tools.htm

     
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  10. Binkie4

    Binkie4 Senior Member

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    @Countrygirl On the question of the forms which were sent to you for completion, is it known whether this is a standardised form used nationally, or is it regional? It would be interesting to know who was on the committee responsible for their design and dissemination, and why they thought these questions relevant.

    @Chrisb

    I was rereferred to the local mE/CFS clinic last year after deteriorating significantly. Yes there were oodles of forms including the esteemed Chalder fatigue questionnaire at which my blood boiled.

    It really did boil. I am finding it difficult even to write it.

    I did not complete most of the papers but there was one asking what I wanted from the appointment. I replied to that one that I wanted a biomedical treatment.

    The appointment was with a nurse. I asked to have an appointment with the doctor running the service, and was told that wasn't possible because he only saw patients needing a diagnosis and I was already diagnosed, in 2008 confirmed by that clinic in 2009/10.

    I was offered GET, said no thank you and I was not pressed to take it. I was discharged from the service at that point which I agreed with. I didn't want their treatments.

    Of course throughout the appointment I had talked about the nightmare Pace trial and the appalling treatments offered by Nice, especially the dangers of GET. The nurse didn't disagree with me and looked embarrassed at offering it I thought.

    I don't regret going because I had no intention of doing anything recommended in CG53, but I wanted to see if there was anything biomedical on offer. No B12 injections ( I asked), but a sheet of recommended supplements to buy oneself.

    Apologies if this final attempt does not correct the yellow box issue. When I last looked it seemed to have spread to adjacent postings so it may be wiser to stop trying now!
     
    Last edited: Jun 21, 2017
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