August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
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Contribute Evidence for NICE consultation

Discussion in 'Advocacy Projects' started by Jenny TipsforME, Jul 8, 2017.

  1. Valentijn

    Valentijn Senior Member

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    I looked a bit into NICE evidence for GET some time ago, and here's my notes:

    Main: https://www.nice.org.uk/guidance/cg53/evidence/full-guideline-196524109

    Evidence: https://www.nice.org.uk/guidance/cg53/evidence/full-guideline-appendix-1-196524110
    Includes validity scores

    CBT
    p54-56
    Deale 1997 & Followup, Lloyd 1993, Sharpe 1998, Prins 2001, Whitehead 2002, Cox 2002 x2, Friedberg 1994, Taylor 2004

    GET
    p57-59
    Fulcher 1997 (1++) - 66 patients, Oxford, 2.7 years ill, 12 weeks GET v flexibility, GET 50% max heart rate
    Moss-Morris 2005 (1+) - 49 patients, Fukuda, 12 weeks CBT/GET v SMC, GET group 2.26 years ill & control group 5 years ill, P-values > 0.01
    Powell 2001 (1++) - 148 patients, Oxford, 48 months ill, 3 types of GET + 1 control
    Powell 2004 (1++) - 2 year followup - controls had crossed-over, no longer controlled?
    Wallman 2004 (1-) - 61 patients, Fukuda, unknown illness duration, GET + Pacing v controls, 6 with MDD, reduced exercise if relapse, objective outcomes compared within groups instead of with controls
    Wearden 1998 (1++) - 136 patients, Oxford, 28 months ill, fluoxetine or HR-based GET, 40 drop outs with 11 due to adverse events

    NICE GET comments: http://forums.phoenixrising.me/inde...-a-rct-burgess-et-al.14222/page-2#post-235243

    Data extraction tables for CBT/GET
    p275-317

    Randomized Controlled Trials (includes objectivity)
    p437-439

    Controlled Trials (includes objectivity)
    p440-441

    Discussion & Comments: http://forums.phoenixrising.me/inde...ice-guidelines-insight-into-their-views.1239/
    Comments: http://forums.phoenixrising.me/inde...tes-to-michael-rawlins-chairman-of-nice.2479/
    Comments: http://forums.phoenixrising.me/inde...sion-margaret-williams-31st-august-2010.6090/
    Comments: http://forums.phoenixrising.me/inde...ate-nice-cfs-me-evidence-base-laid-bare.7071/
    Comments: http://www.angliameaction.org.uk/docs/nice-rcts.pdf
    Comments: http://www.angliameaction.org.uk/NICEJRdocs/Neil_Abbot_MERUK_WS.pdf

    Do Not Do: At and linked under http://www.nice.org.uk/donotdo/mono...tigue-syndromemyalgic-encephalomyelitis-cfsme

    Validity Score: 0-20
    "Only one trial used a sample size calculation" yet many are "good" for that in table p437
     
  2. slysaint

    slysaint Senior Member

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    I don't think you need to worry about that too much...............they are proposing ME/CFS be removed from the static list because of 'upcoming research' where they cite FITNET as an example..........and we have seen that what EC wants, EC gets.
    If ultimately they refuse to review the guidelines they will use removal from the static list as a means of 'showing goodwill/that they are listening to patients etc'. This will in turn be heralded by AfME as a 'victory' and it'll be back to 'business as usual'.......
    (at least that is my prediction:cautious:).
     
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  3. Cinders66

    Cinders66 Senior Member

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    I think CDC dropped CBT & GET recommendations because of concerns of how Oxford based research papers could be assumed to apply to the more accepted definitions of ME/CFS? Isn't the uk problem the contentment with a broad umbrella and then, as AFME woukd say there is evidence to support that management interventions aid some under that umbrella? If NICE were forced to recognise that Oxford fatigue is likely very different to illness defined by pain or immune symptoms or PEM etc and that Oxford based research should be ignored then wouldn't the evidence base supporting GET be poor as the Americans found? How come despite the PACE trial - largest ever trial/supposed gold standard and spin results etc - the Americans seem unimpressed but NICE unmoved?
     
  4. Jenny TipsforME

    Jenny TipsforME Senior Member

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    We're not worried about that. We have a slightly different agenda in how we're answering that question I don't want to be blatant about here.
     
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  5. Jenny TipsforME

    Jenny TipsforME Senior Member

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    @Cinders66 yes we have a draft section about that type of thing. We want PEM to be mandatory.
     
  6. Jenny TipsforME

    Jenny TipsforME Senior Member

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  7. Jenny TipsforME

    Jenny TipsforME Senior Member

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    I can't remember the reason we don't think the Adaptive Pacing in PACE resembles our normal pacing. Too structured?
     
  8. Jenny TipsforME

    Jenny TipsforME Senior Member

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    Any trial with a reasonably large sample that evidences Pacing works?
     
  9. slysaint

    slysaint Senior Member

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    See page 5 on this
    http://journals.sagepub.com/doi/pdf/10.1177/1359105317703787

    "
    The PACE
    trial APT manual, however, describes an exten-
    sive Occupational Therapy intervention that
    includes pacing, but also encompasses relaxa-
    tion techniques, sleep management, body
    mechanics, ergonomics, problem-solving and
    advice for carers (Cox et al, 2004). It is this
    wide-ranging intervention devised for PACE,
    Adaptive Pacing Therapy, that was found inef-
    fective in the PACE trial. Critics have pointed
    out differences between pacing and APT
    (Goudsmit et al., 2012: 1144; Jason, 2017: 1–3),
    which could account for APT having been
    found ineffective in PACE (White et al., 2011)"
     
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  10. Jenny TipsforME

    Jenny TipsforME Senior Member

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  11. MEMum

    MEMum Senior Member

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    There is quite a bit about pacing in Karen D Kirke's recent JHP article
    http://journals.sagepub.com/doi/full/10.1177/1359105317703787.

    Karen also makes the useful comment that PACE did not report the proportion of people already using pacing as a management tool in any of the trial arms, either at onset or end of the trial. Given that many people with ME already used pacing (she cites refs) this could distort the reported results.

    Also, from the File on 4 programme, near the end, Professor Mark Baker (Director of the Centre for Clinical Practice at the National Institute for Health and Care Excellence - NICE) says, (or possibly is quoted as) "New information is being seriously considered".
    This what I jotted down in my notes. Am on holiday at the moment and WiFi is not good enough to download the program, but it is very near the end.
    Given that the release of the raw data from PACE and its subsequent reanalysis which makes "the findings unreliable" are mentioned in the program, then surely they should be looking at PACE errors.

    You are all doing a great job with this. Many Thanks
     
  12. slysaint

    slysaint Senior Member

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    For me, one of the most damning things is that although PACE and their supporters repeatedly say there is no evidence of harm caused by GET, as Karen has pointed out:
    "
    In three large
    surveys, GET consistently ranked highly for
    harm, meaning that a higher proportion of
    patients reported that their symptoms worsened
    with GET than with other approaches. GET
    ranked 2nd most harmful of 20 therapies, 1st of
    25 and 1st of 15 (Action for ME, 2014: 19; The
    ME Association, 2010: 10; Action for ME,
    2008: 13, respectively)."

    Which means not only did the PACE authors ignore this but NICE did as well.
    How on earth can they justify inflicting a therapy on all mild and moderate patients that has been reported several times as being harmful?

    eta: this plus two other things would be my main points.
    Both these two are posted on the Mental Elf thread:
    ""CBT may be helpful for people by changing negative thoughts around being ill and help them cope that way.
    But CBT for PACE was not doing that. It was basically an illness aversion therapy that told people if they changed their illness beliefs they will recover."

    and lastly
    "The PACE authors hypothesise a very clear cause of the condition, in the combination of deconditioning and activity avoidance. This hypothesis is testable. When the evidence does not support it (which it doesn’t), it should be rejected."
     
  13. MEMum

    MEMum Senior Member

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    Prof Mella said that their CycloME pilot trial finishes in July. As it is unblinded results should be out soon, and before end of Oct when RituxME will be unblinded and they will begin that analysis.
     
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  14. Jenny TipsforME

    Jenny TipsforME Senior Member

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    @MEMum thanks. CycloME and RituxME definitely in our Q2 answer about why off static list
     
  15. Jenny TipsforME

    Jenny TipsforME Senior Member

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    Has anyone here done philosophy of science stuff? I have rusty 1st year undergrad knowledge I think could be used but want to sound out someone knowledgeable
     
  16. Cinders66

    Cinders66 Senior Member

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  17. Jenny TipsforME

    Jenny TipsforME Senior Member

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    @Cinders66 yes our current effort is basically response to that proposal
     
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  18. Cinders66

    Cinders66 Senior Member

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    Ok good. It seems stakeholders received it then but it's only recently been put on social media. Far worse than I'd thought.
     
  19. Jenny TipsforME

    Jenny TipsforME Senior Member

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    Yes. Poor response actually made some of us :cry:
     
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  20. Jenny TipsforME

    Jenny TipsforME Senior Member

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    Are there any apps which could help us compare our references with their references?
     

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