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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Specialist treatment of chronic fatigue syndrome/ME: a cohort study among adult patients in England

Discussion in 'Latest ME/CFS Research' started by AndyPR, Jul 15, 2017.

  1. lilpink

    lilpink Senior Member

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    ... and those who didn't follow up were less likely to have depression. So what happened to the depressed patients? Were they re-diagnosed with depression and treated for that? We can assume that Collin and Crawley's version of 'CFS/ME is probably largely populated by people with primary clinical depression as well as other diseases to which they have misapplied their label (I have evidential proof, albeit anecdotal and small) that this can happen with the NOD.
     
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  2. sarah darwins

    sarah darwins I told you I was ill

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    On the "much better" / "very much better" thing .... I have a doctor in the family who often asks me on the phone "How are you feeling in yourself?" or "How are you feeling these days?"

    Since she can't quite believe that NHS 'experts' could have it all wrong, what she means is "How are the MUS?" Knowing this — that she thinks it's in my head — I always but always reply "Fine" or "Good, thanks" or something like that, in an upbeat tone of voice, even if I'm feeling like crap in the middle of a crash.

    Even though I know she totally misunderstands what my illness is, I still want her to think better of me (ie. less crazy) so I lie about how I am. At some level my brain thinks that if I tell her I'm feeling awful it will confirm her opinion of the cause. I also don't want to get into a discussion with her which I know would be pointless, so I say I'm doing well to close it down. It's less effort to lie than to expose myself to a round of "motivational interviewing".

    I'm pretty sure I'm not the only one.
     
  3. slysaint

    slysaint Senior Member

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    My standard reply tends to be 'not too bad'...........
     
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  4. Solstice

    Solstice Senior Member

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    Well, fine is my standard response to people I don't know or to which I don't have an interest of clarifying further. Most people ask out of politeless anyway and don't give a crap. The people close to me thankfully are really supportive most of the time, so I don't have to pretend. But I can only imagine it sucks to have people close to you question you all the time.
     
  5. lilpink

    lilpink Senior Member

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    You're definitely not the only one. I think it goes with the diagnosis. It's a game of 'how do I play this so they don't think I'm the nutter that the BPS school would have me be'? Actually my own GP is being much more friendly lately. He doesn't make any pronouncements about whether or not he thinks 'ME' is 'real' (that old chestnut) as I only see him for new symptoms which might not be part of the ME picture. I saw him recently and in conversation about tests he felt I should have (and which in themselves throw up issues related to my ME) I did preface it with the elephant in the room saying something like: "I know my diagnosis is contentious, and I don't want to come across as a neurotic old biddy but..." I think that sort of casual acknowledgement plus having written a polite letter which I sent to him (and for the benefit of the practice) last September after the first PACE reanalysis paper was published, has left me in a better light. But of course I can't actually read his mind.

    I did have an ironic situation where my neurologist on seeing me more animated on one occasion (long story won't bore you as to why I was more ebullient than usual on arriving at his private rooms) remarked 'Oh I like seeing this side of you'. I think if memory serves I actually simply told him that up until that point I was attempting to come across as a very rational, reasonably intelligent woman trying sensibly to understand and deal with a difficult disease and that, whereas I hope I am all those things, my cool exterior was strategic and that my actual nature is very chatty and ebullient. Unfortunately he'd read that cool exterior as 'depression!' For the record I am not depressed. So you just can't win.
    Another day with another doc they might interpret that animation as being evidence of goodness knows what. But this whole 'second guessing' malarkey when meeting medics is solely the result of the malign influence of the BPS school. Of course we know that...but it's just an added burden to the greater burden they have already foist upon us.
     
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  6. lilpink

    lilpink Senior Member

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    Mine is 'surviving' which is about as accurate in one word as it's possible for me to be.
     
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  7. sarah darwins

    sarah darwins I told you I was ill

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    Very well put. When I'm having these brief (I make sure of that) conversations with my doctor family member, I'm second-guessing myself all over the place, tailoring everything I say for its effect on her. It never even occurs to me to tell the truth, just in case it leads to a debate which I can't win because, well, she's doctor and I barely scraped through my high school science exams.

    White Coat Syndrome must play a huge part in the questionnaire responses this sort of 'research' relies upon.
     
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  8. lilpink

    lilpink Senior Member

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    I think our well-being depends on us telling the truth.... it's how we put the words together to do so isn't it?

    Absolutely.
     
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  9. Valentijn

    Valentijn The Diabolic Logic

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    The questionnaire doesn't measure depression - it measures disability, and equates it with depression. It's designed for use with acute and simple problems being actively treated while staying in a hospital. It's completely inappropriate for untreated chronically ill patients with a multi-system illness.

    Crawley also has a tendency to fudge on whether patients score high enough to cross the depression threshold, or if they're just scoring a little higher in the normal range (due to physical limitations). So that also has to be examined closely before accepting anything they say about depression at face value.
     
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  10. Dolphin

    Dolphin Senior Member

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    The 2 percentages you have mentioned refer to different time points. The 6.2% figure relates to the initial follow-up survey. 3% replied "no" to “Do you think that you are still suffering from CFS/ME?” at that time point.
     
  11. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    But you are in denial. (They would say!)
     
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  12. lilpink

    lilpink Senior Member

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    Yes, that's very true. They just love that HADS questionnaire don't they?
     
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  13. lilpink

    lilpink Senior Member

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    I'm a remarkably happy, motivated depressive I have to say ;)
     
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  14. Sean

    Sean Senior Member

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    Mine is 'getting by', in a very slightly upbeat and joking tone of voice. Just enough to ward off further questions on the matter.

    But I hate the question. There is no answer we can give that is accurate, and understandable and acceptable to non-patients.
     
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  15. Luther Blissett

    Luther Blissett Senior Member

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    I wonder what effect reliance on social security has on the answers too.

    You are usually asked to put down the medical professional who 'knows you best' on forms or similar.

    If you are relying on someone at the clinic or what they report about you to others, you will be motivated to be seen to be 'engaging' with the treatment, if only superficially.

    Patients are not very likely to risk challenging people when their means of food, warmth and shelter are on the line.
     
  16. Dolphin

    Dolphin Senior Member

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    Peter Kemp has kindly done this:

     
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  17. Dolphin

    Dolphin Senior Member

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    The 25th percentile, the lower number in the interquartile range, is very low in this group.
     
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  18. Dolphin

    Dolphin Senior Member

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    A minor point. I find it odd the way they can't bring themselves to spell out what ME represents. They did this in at least one other paper. Acronyms are spelt out in research papers, it is very odd to see an acronym not spelt out.
     
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  19. arewenearlythereyet

    arewenearlythereyet Biscuit Antagonist

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    What I find strange is that they used a 7 point scale rather than a 9 point. There has been loads of analysis done in end point avoidance for these scales (hedonic rating) showing that a 9 point is far superior for adult rating. a 9 point would have been better practice to get more meaningful results ...although I guess that may not have been their objective?
     
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  20. KME

    KME

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    I hear you. I go for a two-pronged answer for people like this. Something like "My ME is bad but morale is good." It seems effective in flummoxing those who need to be flummoxed. If morale is not great, I won't pretend it is, but I'll say something like "The past few weeks have been tough as my ME has been bad, but I'm looking forward to X". X could be sunny weather, watching a sporting event, anything. Some people need you to throw them a positive bone to chew on and then they stop barking.
     
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