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(UK) (Propaganda!?) Report from CCRNC for APPG inquiry into patient services (2009)

Discussion in 'Latest ME/CFS Research' started by Dolphin, Jan 11, 2011.

  1. Dolphin

    Dolphin Senior Member

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    (I figured this was the best section for this)

    Report from CCRNC for APPG inquiry into patient services

    Executive Summary is signed by Esther Crawley, Chair, CRNCC
    http://bit.ly/gfpiFO i.e. http://www.afme.org.uk/res/img/resources/CCRNC report to the APPG Inquiry 2009.pdf

    Although it is portrayed as an impartial report, I don't think it can be seen as such:

    The section, "Quantitative patient satisfaction and outcome data from routine surveys", contains all sorts of data - a small bit from each service.
    It is difficult to believe that this is the only data available.
    Maybe there is a reason for it, but we are not told why there is no quantitative data for services 8, 14, 15 & 17 (there is qualitative data for these services)

    Also, for the section, "Qualitative accounts of patient experiences of Specialist CFS/ME services", it seems like we are only getting some of the data or if not, they didn't ask the best questions to get all sorts of feedback
    e.g.
    Service 10: Results from patient survey: "What was most helpful about the service you have received?"
    Service 14: Service evaluation: "what is really good about your care?"
    Maybe there is a reason for it, but we are not told why there is no qualitative data for services 1, 2, 11, 12 & 16 (there is quantitative data for these services)

    So I think the claims (copied below) that this is better quality data than data from patient surveys are dubious.

    ---------

    Some notes I made for myself (I don't claim they represent the whole report - they don't - they would be unrepresentative although the same question wasn't generally asked):- Service 13 (paeds) seems like Esther Crawley's service (coloured charts) -anyone know/have an educated guess at other ones?

    ----

    Vs
    ----

    (Not exciting) Made worse: two I noticed:
    (i) 10% (n=5) (Service 6, p.10)
    (ii) 11% (Service 11, p.13)

    ----

    (I measured these) (n=41)

    ----

    (This is probably the most interesting and complete data)
    8.9 hours a week on average (3.4) at 12 months still isn't a huge figure
    especially as many aren't that ill and some are probably glandular fever and
    other post-infectious cases in the other stages who would have made a good
    improvement in that time:

    The mean Chalder Fatigue Score going in was 6.9.
    This is a scale where most people with moderate or severe ME score 10 or 11
    out of 11 - see Figure 1 at:
    http://bit.ly/g7Tvup i.e. http://www.iacfsme.org/BULLETINFALL2008/Fall08GoudsmitFatigueinMyalgicEnceph/tabid/292/Default.aspx

    That study found for the different types of ME, the average Chalder Fatigue
    Score (bimodal) was:
    Severe (n=11): 10.82
    Moderate (n=10): 9.42
    Mild (n=3): 7.67
    So even the mild ME group had worse Chalder fatigue scores than the group
    attending service 16.

    ----------------------------------------------------------
  2. Esther12

    Esther12 Senior Member

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    They say:

    I can only agree.

    I wasn't asked to fill in any questionnaire. I wonder how they choose which patients to ask?

    Surely they should have data for 'no of patients seen' vs 'no of questionnaires submitted'. I couldn't see it though, and some of the figure's reported looked really low considering the time span involved.

    I'm still open to the possibility that I just saw a terrible pair of therapists, and everyone else is wonderfully happy with the approach taken by these CFS centers, but I'm not going to have faith in them when they could so easily provide more compelling data if they really had it.

    Are they claiming that they can cure CFS, or just teach us to accept being ill?

    I am working on my aim which is to accept that I have CFS/ME and re-adjust my lifestyle
    to a more acceptable level. Only doing what is most important to me and the family, learn
    to say not to things and people when I know this makes the symptoms worse.

    Learning to pace, relax and time management. Meeting people in the same situation.
    Coming to terms with this illness and my own limitations. Getting more control with the
    illness.

    I do not feel alone with this terrible condition. The advice given to me on filling in the benefit
    forms meant I didnt have to go to an appeal

    Some of the comments imply that they're being encouraged to adopt a sickness role! I know some CFS clinics reject the CBT/GET appraoch - it would be interesting to see how different clinics compared against one another.

    Also, while it may look impressive that a high percent of patients feel they achieved their long-term goals, it needs to be seen in context of what those goals were:

    eg: Drive to do the shopping (long-term goal).

    I don't want to do down this patient's achievement, and if the psycho-socialists were suitably modest in their claims about their ability to understand and treat CFS I'd applaud whatever help they were able to offer... but these sorts of results do not justify the dominance of research spending they have received or the sorts of claims they have been making about the nature of CFS.

    Was that really meant to be an independent report? It read like a sales pitch - and that's fine, so long as they're honest about what they're doing.
  3. biophile

    biophile Places I'd rather be.

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    Ah, so much for the "systematic collection" of information they kept going on about and the "bias" they claimed to compensate for.
  4. Dolphin

    Dolphin Senior Member

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    Yes, I have heard that a lot of the practitioners aren't sticking to the strict CBT/GET view of the world that some promote.

    Yes, this is the issue. CBT/GET is sometimes portrayed as all that patients require - that the model explains everything that is happening with patients. Results on the ground suggest that it tends to lead to few cases of full recovery which one might expect if the model was good as it is presented.

    I'm not sure if you read the last bit I quoted but they try to claim it's impartial and much better data than data patient group's have collected.
  5. Dolphin

    Dolphin Senior Member

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  6. Esther12

    Esther12 Senior Member

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    I understand them thinking that their survey is better than charity surveys... but all are pretty easily distorted.

    Surely this reads like a transparent PR exercise rather than a serious attempt to judge critically whether these services are a worthwhile use of money. If they wanted to look independent, they've not done a good job imo.

    If you see this as them putting their best face foreward, and trying to get/maintain their funding, then the weakness of the case they present seems pretty condemning.

    The 'time spend in paid employment data' looked pretty poor. If these centres are dealing with a representative sample of Oxford Criteria CFS patients, that sort of improvement sounds similar to what you'd expect from standard care (I really wish they included some meaninful comparison figures... the fact they didn't will surely mean anyone reading the report will be less willing to give them the benefit of the doubt). The whole thing seems really flimsy to me, but maybe MPs/decision makers fall for this sort of stuff.
  7. Dolphin

    Dolphin Senior Member

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    Good points.

    Patient surveys can have problems. But I think the MEA survey http://www.meassociation.org.uk/?page_id=1345 http://www.meassociation.org.uk/wp-content/uploads/2010/09/2010-survey-report-lo-res10.pdf and indeed the AfME/AYME survey http://afme.wordpress.com/ are presented in a much more thorough/transparent manner than this survey.

    A large fundraising event raised money for Action for M.E. and the organisers wanted some of it to go to research. Action for M.E. looked at various projects and decided to fund research into setting up a tissue bank (very worthy) and a national outcomes database
    http://www.afme.org.uk/news.asp?newsid=369

    Esther Crawley, one will recall, is the person who put her name to this report.

    She previously condemned the AFME/AYME 2008 survey:
    http://meagenda.wordpress.com/2008/05/16/dr-esther-crawley-condemns-afme-survey-as-unreliable/
    I have little confidence in how she will present data that she will collect. I also have little confidence in Bart's Hospital and how they might deal with the data (see my sig for that service's comments on the draft NICE guidelines). I think Nottingham may be a biased place also.

    I think there needs to be an independent audit of the English/UK services, like happened in Belgium http://forums.aboutmecfs.org/showth...f-Belgian-CBT-GET-rehab-clinics-(large-sample) , where the results were not very impressive (they used Fukuda criteria and amount of hours worked actually decreased!).
  8. Esther12

    Esther12 Senior Member

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    Absolutely. When you have the proponents of a treatment assessing it's efficacy, you have a recipe for quackery and dishonesty. I find it hard to blame them for it... if I was marking my own work I'd spin it as positively as possible to - especially with cutbacks due.

    (I'm having PC trouble, so haven't looked at those links you provided. Thanks for them though.)

    Also - was this the report that took ages to come out because of the extensive analysis of results they wanted to do? Did I miss the clever and enlightening statistical analysis they'd put all that work in to?
  9. Dolphin

    Dolphin Senior Member

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    Which shows one might not have that much difficulty convincing an impartial person that an independent audit would be more accurate.

    Are you thinking of the (5m) PACE Trial (which was approved for funding in 2003 and where the results were expected in the second half of 2010)?
  10. Esther12

    Esther12 Senior Member

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    I get the impression that no-one impartial is interested in CFS one way or the other.

    There's that NHS consultation happening now. My PC trouble's prevented me looking at it today, but if I'm able to get on-line again tomorrow I've been planning to submit stuff. I expect it will all be ignored, but may be worth a go.

    No. I semi-remember reading Esther (other esther) talking about releasing follow up information from patients of these centers, and how complicated and difficult it will be to compile and analyse the results. I was expecting more. I've no idea where I read it (possibly on here?), and could well have got the wrong end of the stick, but it wasn't with PACE.
  11. Dolphin

    Dolphin Senior Member

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    Maybe so.
    I meant somebody contracted to audit.
    But there might be a bias as it's an NHS employee.
    With the Belgian clinics, an outside body (the state health insurance company - think that would be a description that might give an idea what it was - don't full understand the system) set the outcome measures. So there were things like exercise testing and hours worked rather than simply questionnaires. I heard something like that anyway, that it wasn't the clinics who set the outcome measures, etc (nor did they write the report, I think).

    They have been collecting the "Minimum Data Set" for years. Data from the services has been promised at some stage. Maybe there was a delay - not sure I heard.
  12. Esther12

    Esther12 Senior Member

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    That sounds the way to do it. Especially if the practitioners don't know what measures are being used. I think I could run a clinic for CFS that could lead to significant improvements in any particular measure, just by encouraging patients to prioritise that over other aspects of their life. Very often, that seems to be good enough. Even an independent auditor could slip up if they didn't know what they were doing, or failed to think about the claims being made critically enough.

    I should re-read that Belgian stuff. I read it a while back, and have the thread saved to my favourites to go back over.
  13. Dolphin

    Dolphin Senior Member

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    I think your point about training for particular measures is a good one.
    However, I should say, that I don't think with the Belgian clinics the outcome measures were hidden from the people running the clinics, just that the people running the clinics didn't get to pick them (or some of them anyway, or at least, not without discussion - I'm not 100% sure which as I'm going on second/third-hand information).

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