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We’ve all seen them in the news stories about ME/CFS: the guy in a suit at the office, yawning; the beautiful woman sitting at her desk with her immaculate make-up and elegantly coiffed hair, hand to her head and looking slightly pained.
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Defining and measuring recovery from ME & chronic fatigue syndrome: the physician perspective

Discussion in 'Latest ME/CFS Research' started by Dolphin, Oct 7, 2017.

  1. Dolphin

    Dolphin Senior Member

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    http://www.tandfonline.com/doi/full/10.1080/09638288.2017.1383518?scroll=top&needAccess=true
     
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  2. Dolphin

    Dolphin Senior Member

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    ahimsa, Cheesus, Jan and 13 others like this.
  3. Woolie

    Woolie Senior Member

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    Lovely rebuttal of the PACE authors' idea that recovery is whatever you decide it should be on the day.
     
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  4. user9876

    user9876 Senior Member

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    I did wonder if someone could do a survey of patients (perhaps physicians and healthy people) using the sf36 questionnaire to see what abilities on the scale would correspond to 'recovered', 'healthy' etc. The EQ5d scoring is based on a utility function derived from surveys of healthy people where each person is only asked a few questions they are then combined using regression.
     
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  5. meandthecat

    meandthecat Senior Member

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    It's refreshing to read research that is seeking to understand rather than attempting to 'prove' a position. The views of an obviously enlightened and liberal group of doctors took me back to a rational place where humanity still had a role rather than the dogma that is usual and is used to bludgeon the terribly sick and vulnerable.

    I hesitate to say I have recovered, I have certainly improved more than I dreamed possible but there are still cognitive deficits that I struggle with everyday, like word-finding. Reading often involves chasing the words around the page, and maths,simple arithmetic is a challenge( I once studied it at degree level).

    I suspect that there will always be a 'scar' on the mind after such a horrific disease even if we decide that the disease has departed so a nuanced stance on recovery is a step toward claiming back our lives. I will never be as I was, it has changed me but in the words of Christina aguilara:

    Cause it makes me that much stronger
    Makes me work a little bit harder
    It makes me that much wiser
    So thanks for making me a fighter…
     
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  6. slysaint

    slysaint Senior Member

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    "Physicians conceptualised recovery as complete symptom remission and a return to premorbid functioning (adjusted for with age)"

    I would think this is what most people consider recovery. It is common sense, apart it would seem for the likes of Crawley, White Sharpe etc who seem to equate it to any minor, temporary improvement which is more akin to 'recovering' and is something different entirely.

    Ideally there would be a few biological tests that could be run to confirm recovery but, as for a lot of illnesses, I suspect that would still not guarantee there would be no relapses.

    But on the subject of means of testing recovery according to Crawley:
    "No children ever said they wanted biological measures......."

    Well no Esther, they are children; you are supposed to be the 'expert researcher'.
     
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  7. user9876

    user9876 Senior Member

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    The complex thing about a recovery definition is in defining recovery vs remission. As in is this something that will come back and if so should people be doing stuff to avoid it.

    I think remission is probably a better term than recovery.
     
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  8. Denise

    Denise Senior Member

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    As you say, children don't have the knowledge base to know that they want biological measures of recovery.

    And depending on when they got sick and how long they have been sick, many would not remember what their premorbid level of function was like. (Much less would they know what "normal" would be for their current age.)
     
  9. Sean

    Sean Senior Member

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    That line from Crawley is more than a little disturbing.

    Children never say they want surgery either. But they still need it sometimes.
     
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  10. user9876

    user9876 Senior Member

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    Of course its not up to children to design the experiment although I wonder if they were set the task along with some basic background in how to run a trial then they would have done better.

    The thing about biological measures is interesting because Crawley makes various assertions in the press about how treatments may work but she does nothing to collect evidence for her assertions. I think the LP talks a lot about adrenalin but there are no measures taken.
     
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  11. Esther12

    Esther12 Senior Member

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    Was that line actually a quote from Crawley? @slysaint ?
     
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  12. Cheshire

    Cheshire Senior Member

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    I think this comes partially because of the loose way "recovery" is defined in general in psychiatry. Their definition is closer to improvment than recovery (for me return to pre-morbid state, period):

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4418239/


    According to the 2d sentence I bolded, many of us are recovered...

    I read elsewhere similar descriptions of recovery in psychiatry, it seems to be the norm.
     
    Last edited: Oct 8, 2017
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  13. slysaint

    slysaint Senior Member

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    Yes. CMRC conference 2016.
     
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  14. Esther12

    Esther12 Senior Member

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    Thanks for the reference. I don't think I ever managed to watch that talk all the way through.
     
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  15. IreneF

    IreneF Senior Member

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    I have done extremely well on psych meds. I would say I’m recovered, in the commonly accepted sense of no longer having symptoms. But it just goes to show how ineffective psychiatrists think their treatments are.
     
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  16. anni66

    anni66 mum to ME daughter

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    I would dispute that - my daughter would love to be able to read, exercise,engage in education and would love to have " real" evidence.
     
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  17. Woolie

    Woolie Senior Member

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    That is mental (if you'll excuse the pun).

    Actually, if you look carefully at @Cheshire's quote, its the same sort of doublespeak that gets thrown at us:
    It doesn't say that recovery is staying in control of your life, etc. What it seems to be saying you can forget "real" recovery as you understand it, because all you can hope for is staying in control of your life. etc.

    Key phrases are used very slyly here. Like 'for many people' and 'the concept of' and 'is about'.
     
  18. Dolphin

    Dolphin Senior Member

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    Very useful paper.
     
  19. Dolphin

    Dolphin Senior Member

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  20. lnester7

    lnester7 Seven

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    I love love this. When I hear recovery stories I am errrr if I go by that I am recovered and I am far from!!!! I hate recovery stories where people say “ but I still take 300 supplements to be able to function and have to manage energy”... in my book I agree with this blog definition of recovery.
    Since I do get spontaneous remissions on and off ( colds, viruses..) I can tell you there is a huge difference to not having to manage energy vs not.
    If you have to manage energy YOU R NOT RECOVERED. Same if you can’t do aerobic excercise!!!!
     

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