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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. Dolphin

    Dolphin Senior Member

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    Among other things, this shows that "much better" is a much worse result than "very much better". In the PACE trial, "very much better" was required for recovery in the PACE trial protocol. However by the time the recovery paper was published, "much better" was also sufficient.

    12913_2017_2437_MOESM2_ESM.png
     
  2. Dolphin

    Dolphin Senior Member

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    Gives an idea of who are seen at clinics.

    I would prefer if they also asked how long people had been diagnosed. I think a lot of people would see some sort of improvement in the period after they get diagnosed which allows more stabilisation than if you are not diagnosed.

    The proportion of men in those who attend clinics (19%) is smaller than that of those who are getting diagnosed in the UK (27.4%).
     
  3. Dolphin

    Dolphin Senior Member

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    Information on people for whom they had outcome data compared to those who did not respond to a request for data:
     
  4. Dolphin

    Dolphin Senior Member

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    These would include people who gave up on therapy.
    Also 59.8% had "not yet completed treatment or had an open appointment future follow-up appointment" so likely had more appointments in total.

    12913_2017_2437_Fig2_HTML.gif

    It looks like often people get more sessions than NICE have budgeted for:

    I think this can get forgotten when comparisons are made between nonpharmacological and pharmacological treatments for ME/CFS. The nonpharmacological treatments can cost more in practice than what people say they cost in cost estimates.
     
    Last edited: Jul 15, 2017
  5. Dolphin

    Dolphin Senior Member

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    http://journals.plos.org/plosone/ar...notation/a8885639-df48-41bd-8dd9-2dcfad623fb6

     
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  6. Dolphin

    Dolphin Senior Member

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    http://journals.plos.org/plosone/ar...notation/e7f35e14-c148-46b1-b84e-17a08abb4b1b

     
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  7. Dolphin

    Dolphin Senior Member

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    While it is better to have data broken down like this, the same breakdown should probably applied to an increase in hours. If due to family commitments somebody stopped working or reduce their hours, their health was not necessarily worse but at the same time if people had previously not been working due to family commitments, their health is not necessarily better if they are now back working or have increased their hours.

    So probably best to compare 18.0% with 34.8% (i.e. 30% + 4.8%)
     
    Last edited: Jul 15, 2017
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  8. Dolphin

    Dolphin Senior Member

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    ----

    It is interesting to see how close the figures match. Usually they just ask about overall health/change in research studies. This is presumed to represent change in CFS/ME. But of course people's health could deteriorate for other reasons or alternatively other health problems could improve independent of CFS/ME. But here the percentages, as I said, are very similar.
     
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  9. Dolphin

    Dolphin Senior Member

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    When I first read this, I thought the "no" group might mean a recovered group and a lot of those in the "uncertain" group might also be recovered.

    However reading the 2nd line made me think of another possibility: some of those could consider that CFS/ME was a misdiagnosis and instead they had a different condition in which case they wouldn't consider themselves suffering from CFS/ME but you wouldn't consider them recovered from bad health.

    Perhaps there are other additional ways the 2nd sentence can be explained.

    Anyway the overall recovery rate following attending clinics is low.
     
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  10. Dolphin

    Dolphin Senior Member

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    Those who responded to the long-term follow-up questionnaire seems similar enough to do those who didn't respond:
     
  11. Dolphin

    Dolphin Senior Member

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    I'm just going to repeat my point from above:

    So probably best to compare 23.7% with 34.9% (i.e. 27.4% + 7.5%)
     
  12. Dolphin

    Dolphin Senior Member

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  13. Dolphin

    Dolphin Senior Member

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    As I pointed out above, people could rate themselves as no (or uncertain) because they considered CFS/ME as a misdiagnosis rather than that they were fully back to health.
     
  14. Dolphin

    Dolphin Senior Member

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    One thing that is missing from this paper is a comparison with the results from an earlier (2013) study that looked at the English clinics.
    Free full text:
    https://academic.oup.com/qjmed/article-lookup/doi/10.1093/qjmed/hct061

    From my recollection, the results seem similar though there was no employment data reported in the earlier study.
     
  15. Dolphin

    Dolphin Senior Member

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    Arguably the biggest spin occurs in the conclusion section:
    There is no mention that simply giving people a diagnosis without the specialist services would likely lead to an improvement in some people over time.
     
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  16. Dolphin

    Dolphin Senior Member

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    Actually from this figure in the supplementary files, one can see the different numbers on the CGI:
    n=403
    "very much better": 25 (6.2%)
    "much better": 92 (22.8%)
    "a little better": 156 (38.7%)
    "no change": 65 (16.1%)
    "a little worse": 51 (12.7%)
    "much worse": 23 (5.7%)
    "very much worse": 11 (2.7%)
    Collin 2017 12913_2017_2437_MOESM2_ESM.png
     
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  17. Snow Leopard

    Snow Leopard Hibernating

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    But it means the 5 year results are potentially biased - I predict those who did not improve are less likely to care about returning a questionnaire at 5 years.
     
  18. Valentijn

    Valentijn Activity Level: 3

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    So maybe "very much better" is a decent representation for a patient thinking they are fully recovered. But it's interesting that at least 25% of the "don't have CFS now" group don't rate themselves as being very much better. Maybe that's our misdiagnosed group?

    In any event, it's obvious that "much better" pretty explicitly indicates that a patient does not think he or she has recovered from CFS.
     
  19. lilpink

    lilpink Senior Member

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    MUS gender discrimination in action by the seem of it....
     
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  20. lilpink

    lilpink Senior Member

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    "“Do you think that you are still suffering from CFS/ME?”, " is a very leading question given "Study population 7901 patients had a new CFS/ME diagnosis recorded during the study period.".

    Perhaps it would have been better to ask " do you think that you are still suffering from our own version of what we choose to call ME and which most ME patients do not recognise as being representative of the illness"?

    Edit : they actually choose to call it 'CFS/ME' . Same contention applies .
     
    Last edited: Jul 16, 2017
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