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(by Peter White) "Chronic fatigue syndrome service: St Bartholomew’s (Barts) Hospital, London"

Discussion in 'General ME/CFS News' started by Dolphin, Dec 26, 2012.

  1. Dolphin

    Dolphin Senior Member

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    (Originally posted on Co-Cure)
    - yet Peter White and the other PACE Trial investigators are not planning to publish the recovery outcome measure (a secondary outcome measure) from the £5m PACE Trial, nor will they give it in response to a Freedom of Information Act request.
    ---

    The definition was broad: 42% in the SMC (control-type group) also satisfied the post-hoc criteria for a clinically useful improvement.
    The more strict primary outcome "overall improvers" has never been published and they do not intend to publish it or release it in response to a Freedom of Information request]


    =====================

    http://bit.ly/RieusW i.e.

    http://www.nhsconfed.org/Publications/Documents/Investing in emotional and psychological wellbeing for patients with long-tern conditions 18 April final for website.pdf




    ====================
    Taken from:

    http://www.nhsconfed.org/Publicatio...ndPsychologicalWellbeingLongTermPatients.aspx

     
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  2. Sean

    Sean Senior Member

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    o_O

    :zippit:
     
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  3. user9876

    user9876 Senior Member

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    So there claim is pace gave 60% improvement and they say they expect slightly less impressive results in a clinical setting. Yet they expect 75% of patients to improve with 25% recovery.

    They can't even be consistant in there own summarys
     
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  4. GracieJ

    GracieJ Senior Member

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    This is so insanely illogical it hurts! "...known to be illness beliefs..."

    Give me a break. No wonder UK patients are having nightmares.
     
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  5. Enid

    Enid Senior Member

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    What's a clinically useful improvement from these wonkos - like unaided I eventually made the bathroom, recognised neighbours unaided except turning to the understanding and recognised supplements from those who know all the underlying pathologies to address. Pathetic these psychos. I had to educate my own GPs, Neurologists - hey any idea why I've passed out etc - they hadn't a clue either.
     
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  6. GracieJ

    GracieJ Senior Member

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    Just went to the PACE Trial home site. There is tacit agreement that ME/CFS is a physical disorder within their very definitions of each "therapy."

    Wall. Head. Bang. Repeat.

    o_O:confused::eek::rofl::thumbdown::ninja::ill: Take your pick!!! (Wonder if straitjackets come in lavender... lol)
     
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  7. Enid

    Enid Senior Member

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    Psychos becoming "physical" - all the emotions from me GracieJ.This man who understands nothing, is not equipt with science/medical research findings should ever speak belongs in some fairyland (to be kind).4 specialist real Docs in my own family agree.

    Yep the morning breeze as we battle on against this ignorance specific to the UK. Thanks Gracie. There are people who come on this site for help and support not c....p from psychos pretending science.
     
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  8. Bob

    Bob

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    Thanks for highlighting this, Dolphin.

    I'm not sure what the "NHS confederation" is. Does anyone know how much influence it has?

    I've made some observations of the leaflet, posted below, mainly to organise my thoughts.

    Most of you will not find anything you don't already know, in my comments, below.


    Mental Health Network
    NHS conferderation

    'Investing in emotional and psychological wellbeing for patients with long-term conditions'

    http://www.nhsconfed.org/Publications/Documents/Investing in emotional and psychological wellbeing for patients with long-tern conditions 18 April final for website.pdf

    Medically unexplained symptoms

    Case Study
    Chronic fatigue syndrome service:
    St Bartholomew’s (Barts) Hospital, London

    (Page 53)​

    The following section of text is actually quite interesting, and encouraging:
    This is very worrying:
    Based on the above quote, the following is very worrying:
    I don't like this bit about pacing, because 'pacing' was not tested in the PACE Trial:
    This is misleading:
    (It should say "The PACE Trial showed outcomes of an extra 14% or 16% of patients making a clinically useful improvement in both symptoms and disability, with either CBT or GET")

    At least they acknowledge the following, in relation to the PACE results:
    But a figure of less than 16% for improvement rates is really not "impressive".

    And seeing as CBT and GET had such pitiful results for objectively-measured disability outcomes in the PACE Trial, then if clinical practice has worse (or "less impressive") outcomes than the PACE Trial, for disability, then things are not looking good for clinical practice.

    These are interesting stats, even if unhelpful:
    It's an acknowledgement that a majority of CFS patients do not 'recover' (based on their own definition of 'recovery'), even if the patients' alleged ('maladaptive') "illness beliefs" etc. are addressed and 'treated'.

    Of the 25% who allegedly 'recover', we do not know how many would have 'recovered' without treatment with CBT or GET.
     
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  9. Wildcat

    Wildcat Senior Member

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    .
    The Barts designed and linked Sussex CFS NHS Services. Please note the only symptom listed is 'fatigue' with emphasis on "Illness beliefs". These services were negotiated and accepted by the local Sussex CFS Society (known locally as the 'Sussex Fatigue and Depression Society'....... which alienates and sidelines people with CCC ME.

    .
    I cannot extrapolate much on this issue at the mo as I have a broken right arm and am very slowly typing with one finger. But I provided a dossier of evidence re what is wrong with the 'cfs/me' Services in Sussex to the APPG NHS Services Inquiry of 2009.

    .


    .

    http://meagenda.wordpress.com/2009/06/13/rime-sussex-services-june-2009/

    Sussex Services

    Sussex wide CFS/ME MDT service http://rwstgp.org.uk/site/cfs.html


    Referral criteria
    Patients accepted as referrals into the Sussex CFS/ME MDT need to fulfil the following criteria;

    Aged 16 or above, but no upper age limit
    • Under 16s should be referred to Acute or Community Paediatrics or CAMHS
    • A primary complaint of unexplained fatigue which is disabling and affects physical and mental functioning.
    • No clear alternative medical or psychiatric diagnosis has been made
    • The duration is at least 4 months
    • There are copies or reports of normal or negative investigations, as described below (see notes on medical screening), performed in the previous three months
    • The patient is willing to have a biopsychosocial and management assessment
    • The GP or referring doctor is responsible for providing reports for benefits/employment/insurance purposes as appropriate, which will not be provided by LMDT staff.
    Notes on Medical Screening
    Assessment
    All patients will be assessed by a doctor experienced or trained in the diagnosis and management of CFS/ME. The assessment process is intended to determine whether the diagnosis of CFS/ME is appropriate and what further management is indicated
    N.B. The medical assessment here is designed to be done by the LMDT doctor, but it may be possible in the future to give this responsibility to the GP or other referring doctor, with appropriate protocols and training.


    Medical assessment will include :
    History
    Particular emphasis should be placed on:
    History of present complaint
    Any atypical features suggesting alternative diagnoses
    Current activity level/pattern
    Mood disorders (including both depressive and anxiety disorders)
    Illness beliefs
    Sleep pattern
    Common medical and psychiatric exclusions


    Examination
    All patients will undergo a physical examination. The extent of this examination is at the discretion of the examining doctor, and will be influenced by the history.
    All patients will undergo a mental state examination.


    Investigations
    Prior to Referral – all patients will have the following investigations performed: Full blood count, ESR or C-reactive protein, urea and electrolytes, liver function tests, calcium, albumin, creatine kinase, thyroid function (TSH and free T4), coeliac screen, random blood glucose, urinalysis for blood, sugar and protein.
    (NB these tests are to be completed by the referrer, before a referral is accepted. Depending on the length of history and age of the patient, these tests should normally be done within three months of referral.)
    The history may suggest the need for other tests (e.g. ANA, Lyme serology) but in the absence of a suggestive history no further tests are mandatory.




    ————————


    Link to Barts

    The CNCC for the Sussex Wide CFS/ME Service is Barts, London. The minutes of a West Sussex PCT Meeting 24/5/07 say:

    … The Sussex MTD will be linked to Barts’ who will provide consultation and training support in its role as CNCC. The support provided by the CNCC will be mainly in terms of education and advice to the Local Multi Cisciplinary Team, in order to enable patients to receive their care locally. The Barts’ CNCC will also offer one-off consultation on more complex cases where this is appropriate…


    .##########################################################




    the full Rime report on the SUSSEX SERVICES and some comments from local patients/carers is on this link
    http://meagenda.wordpress.com/2009/06/13/rime-sussex-services-june-2009/

    .
     
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  10. Bob

    Bob

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    In the reference to 'clinical' outcomes not being as successful as 'trial' outcomes, the NHS confederation leaflet includes a citation for a National Outcomes Database presentation (2010):

    The link is for a 2010 presentation.

    A more recent 2011 presentation can be found here:
    http://www.bacme.info/document_uploads/NOD/NODpresentation2_b135d.pdf

    This 2011 doc, includes 'changes' for SF-36 physical function scores. (see the last slide.)
    I can't quite interpret it, but it could potentially provide some interesting info.

    If my initial guessing interpretation is correct, then maybe the various clinical centres have seen average changes of between zero and 7.5 points for SF-36 physical function scores. But is this for CBT/GET only, or for overall treatment at the clinical centres? (PACE saw average SF-36 Physical Function score changes of 7.1 and 9.4 for CBT and GET)

    More National Outcomes Database info, including all of the above links, can be found here:
    http://www.bacme.info/nod/
     
  11. biophile

    biophile Places I'd rather be.

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    The South London and Maudsley NHS Chronic Fatigue Service are aware of trouble makers such as yourself Bob!
    Questions and concerns about the credibility of rehabilitation? Why, that's a lashing of CBT!

    I am going to open up my own CBT clinic for CFS researchers. Goals of therapy include challenging problematic beliefs or fears which interfere with the use of objective measures or openly admitting to the implications of the limited objective data already collected, with actively warning patients that CBT/GET probably does not help employment/welfare status, and with the release of data which was originally promised when they accepted millions of pounds from the tax payer.
     
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  12. taniaaust1

    taniaaust1

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    They are doing 30 treatment sessions where as the PACE trial only had 15 hence they can use that to "explain" their better results. In other words.. suggest we all need just more CBT and GET for better outcomes.

     
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  13. taniaaust1

    taniaaust1

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    Yeah probably.. I guess if a patient finally manages to shower but due to the post excertional symptoms afterwards then cant go and get themselves a drink like they usually manage and are then too sick to also eat... it would then be counted as an improvement as hey they showered.
     
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  14. Snow Leopard

    Snow Leopard Senior Member

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    It is weird. There was a paper by Wessely/Chalder which showed that RCT results are clearly superior to that of clinical settings and there is no evidence that the gap can/has been bridged.
    http://www.kcl.ac.uk/innovation/groups/projects/cfs/publications/assets/2007/Quarmbyrandomised.pdf
     
  15. Sean

    Sean Senior Member

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    Yet the vast bulk of any treatment 'benefit' from PACE came in the first 3 months or so, then tapered right off, with minimal further gains over the remaining 9 months during which patients were still undergoing treatment.

    Hardly supportive of the claim that simply more of the same treatment will deliver a proportionally better result.

    These guys are just rewriting the rules as they go along.

    I can think of less polite, but more accurate ways of saying it. :whistle:
     
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  16. Sean

    Sean Senior Member

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    To put it another way, the therapeutic response is basically asymptotic.

    Not to mention minimal, and off a very low baseline.
     
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  17. biophile

    biophile Places I'd rather be.

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    No control rates mentioned for any of these figures, giving the misleading impression that CBT or GET is wholly responsible. In the case of the 60% response rate given for the PACE Trial, the control rate was 45%.

    The NOD source in the quote does not confirm that "these services are equally effective at reducing symptoms, but less effective at improving disability". We are not given control rates (natural course) for the fatigue scores, and disability is not even mentioned at all? Is this the later paper on the NOD data? http://qjmed.oxfordjournals.org/content/early/2013/03/28/qjmed.hct061.full . A follow-up rate of 51% does not sound impressive or reliable.

    [ Edit: here is the corrected published version http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3665909/ ]

     
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  18. Dolphin

    Dolphin Senior Member

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    Yes, NOD is even in the title:

    They sometimes use the SF-36 physical functioning subscale, which is reported on, to describe disability.
     
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  19. biophile

    biophile Places I'd rather be.

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    Limited data available suggests "activity management" is more effective than CBT/GET:

    Extract from the (full) 2007 NICE guidelines for CFS/ME:

     
  20. Dolphin

    Dolphin Senior Member

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    "Activity Management" in the NICE guidelines had elements of GET/GAT. It was a "light" or "lite" version of GET/GAT for those who were severely affected, a group for which there wasn't much evidence and so they couldn't recommend GET/GAT directly.

    However, I think if NHS services/clinics say they are using activity management, what they are likely saying is they're not big GET/GAT fans, and concentrate more on pacing.
     
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