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Specialist treatment of CFS/ME: a cohort study among adult patients in England, 2017, Collin and Crawley

Discussion in 'PsychoSocial ME/CFS Research' started by Hutan, Oct 5, 2020.

  1. Hutan

    Hutan Moderator Staff Member

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    Abstract
    Background
    NHS specialist chronic fatigue syndrome (CFS/ME) services in England treat approximately 8000 adult patients each year. Variation in therapy programmes and treatment outcomes across services has not been described.

    Methods
    We described treatments provided by 11 CFS/ME specialist services and we measured changes in patient-reported fatigue (Chalder, Checklist Individual Strength), function (SF-36 physical subscale, Work & Social Adjustment Scale), anxiety and depression (Hospital Anxiety & Depression Scale), pain (visual analogue rating), sleep (Epworth, Jenkins), and overall health (Clinical Global Impression) 1 year after the start of treatment, plus questions about impact of CFS/ME on employment, education/training and domestic tasks/unpaid work. A subset of these outcome measures was collected from former patients 2–5 years after assessment at 7 of the 11 specialist services.

    Results
    Baseline data at clinical assessment were available for 952 patients, of whom 440 (46.2%) provided 1-year follow-up data. Treatment data were available for 435/440 (98.9%) of these patients, of whom 175 (40.2%) had been discharged at time of follow-up. Therapy programmes varied substantially in mode of delivery (individual or group) and number of sessions. Overall change in health 1 year after first attending specialist services was ‘very much’ or ‘much better’ for 27.5% (115/418) of patients, ‘a little better’ for 36.6% (153/418), ‘no change’ for 15.8% (66/418), ‘a little worse’ for 12.2% (51/418), and ‘worse’ or ‘very much worse’ for 7.9% (33/418).

    Among former patients who provided 2- to 5-year follow-up (30.4% (385/1265)), these proportions were 30.4% (117/385), 27.5% (106/385), 11.4% (44/385), 13.5% (52/385), and 17.1% (66/385), respectively. 85.4% (327/383) of former patients responded “Yes” to “Do you think that you are still suffering from CFS/ME?” 8.9% (34/383) were “Uncertain”, and 5.7% (22/383) responded “No”.

    Conclusions
    This multi-centre NHS study has shown that, although one third of patients reported substantial overall improvement in their health, CFS/ME is a long term condition that persists for the majority of adult patients even after receiving specialist treatment.

    https://bmchealthservres.biomedcentral.com/articles/10.1186/s12913-017-2437-3#Fig3
    Open access
     
  2. Hutan

    Hutan Moderator Staff Member

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    Only 30% of former patients provided followup data in the 2 to 5 year period.
    Of that 30%, 85% said yes, they were still suffering from ME/CFS and another 9% weren't sure. Only 5.7% said 'no, I'm not still suffering from ME/CFS'.

    I would have expected a much higher recovery rate just from natural improvement of a group of people diagnosed with ME/CFS, some of whom may have had other conditions. And that's before subjecting them to brainwashing about a psychosomatic cause i.e. 'it's only your thinking that is stopping you get better' and increasing the stigma of having an ME/CFS diagnosis.
     
    cfsandmore, ukxmrv, Sean and 9 others like this.
  3. rvallee

    rvallee Senior Member (Voting Rights)

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    That's the exact opposite of what they've been selling and marketing for years. Good to see they had the sense to admit this one lapse but it hasn't changed anything in their work or messaging since so what the hell does that say about the whole thing? That they keep debunking their own assumptions and never cease to promote them, unchanged from their early days, themselves largely unchanged from their origins over a century ago.

    It's not as if this "specialist treatment" is specialist in ME so I don't know the point of pretending other than for purely marketing purposes. These people are absolutely not specialists in ME and have never bothered to learn the basics.
    This is clearly not a valid ME cohort if only 19% were on sick leave. Or this is a strictly mild cohort anyway, an unrepresentative sample.
    I would assume most of that 18% of "returned to work or increased hours" were "increased hours". Why they would pool them together obviously reeks of burying relevant data. So basically nearly twice as many worked less or stopped working than those who worked more or resumed working. And this is here is on actual objective data, not some completely invalid "returned to normal by meeting the functional threshold of an average 80 year-old".
    This would appear to be consistent with fewer people working or working less, and thus having some limited ability to expand that energy. Basically it shows that removing the work requirement from chronically ill patient increases their quality of life. Who knew?! Besides literally everyone.

    But in an Orwellian twist, evidence does not actually matter in evidence-based medicine. Despite the rosy baseless claims about vague generic improvements on arbitrary questionnaire scores, this debunks everything these people have been selling for decades. And it won't even matter, they will keep making the same claims they have been making baselessly.

    And even though this is an unrepresentative sample, the 5% rate of "recovery" is still there with a clearly mild cohort. Basically playing on easy mode with cheat codes and still losing.

    Interesting, @dave30th.
     
  4. Hutan

    Hutan Moderator Staff Member

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  5. rvallee

    rvallee Senior Member (Voting Rights)

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    Peter Trewhitt and alktipping like this.
  6. Barry

    Barry Senior Member (Voting Rights)

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    "CFS/ME is a long term condition that persists for the majority of adult patients even after receiving specialist treatment."
    Exactly. My first thought when I read that is that they finally seem to be tacitly conceding their findings over the years have been grossly over-hyped. Worried they may not be so convincing after all.
     
  7. Amw66

    Amw66 Senior Member (Voting Rights)

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    Given the degree of attention such research is being given due to long COVID a tactical retreat ?
    Let's a research focus move whilst retaining status ...
     
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  8. chrisb

    chrisb Senior Member (Voting Rights)

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    A good day to bury bad news?
     
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  9. Hutan

    Hutan Moderator Staff Member

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    Just to clarify, this thread is about a 2017 paper evaluating outcomes in nearly 1000 patients in NHS CFS clinics.
    Tom Kindlon referenced the paper when responding to recent claims by Alastair Miller about the efficacy of the clinics.
     
    ukxmrv, alktipping, rvallee and 4 others like this.
  10. Creekside

    Creekside Senior Member (Voting Rights)

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    Maybe these were people who didn't have ME to begin with, and found a different diagnosis. I also wonder what the results would be from people who would have fit the criteria for the study, but didn't get the 'specialized treatments'. I'm sure some would also have improved. Also, did the people who did get the treatments not do any self-treatments that might have affected their severity? Sounds like a pretty meaningless study, at least from the perspective of people who really do have ME. Bureaucrats might love it, since they can probably find something in it to justify whatever they like.
     
    Andy, obeat, Hutan and 1 other person like this.

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