Agents for Change: The 10th Invest in ME International ME Conference, 2015 - Part 1
The 10th Invest in ME International ME Conference (IIMEC10) was held, as usual, in the Lecture Theatre at 1 Birdcage Walk in Westminster on May 29th, 2015.
Discuss the article on the Forums.

(FINE) Factors influencing engagement of patients in a novel intervention for CFS/ME (Chew-Graham)

Discussion in 'Latest ME/CFS Research' started by Dolphin, Jan 19, 2013.

  1. Dolphin

    Dolphin Senior Member

    Free full text:

    *I've given each sentence its own paragraph
  2. Dolphin

    Dolphin Senior Member

    From introduction:

    Part 1 of underlined bit: the symptoms could be a sign of relapse

    Part 2 of underlined bit: CBT approaches to CBT/ME tend to be more directive than they are saying, with not all personal models being acceptable.

    The underlined bit is talking about the FINE Trial results. "Effective" is probably overstating it.

    Table 3 has some results (remember these aren't all the results).

    SF-36 physical functioning scores

    If take the 17 where we have results before and after:
    Mean 30.88
    SD 16.61
    SEM 4.03
    N 17
    90% CI 23.85 to 37.91
    95% CI 22.34 to 39.42
    99% CI 19.12 to 42.65
    Minimum 0
    Median 30
    Maximum 60


    Mean 44.12
    SD 30.53
    SEM 7.40
    N 17
    90% CI 31.19 to 57.04
    95% CI 28.42 to 59.81
    99% CI 22.49 to 65.74
    Minimum 0
    Median 45
    Maximum 95

    If take all 19

    Mean 30.26
    SD 16.11
    SEM 3.70
    N 19
    90% CI 23.85 to 36.67
    95% CI 22.50 to 38.03
    99% CI 19.62 to 40.90
    Minimum 0
    Median 30
    Maximum 60

    Using last value carried forward:

    Mean 42.11
    SD 29.60
    SEM 6.79
    N 19
    90% CI 30.33 to 53.88
    95% CI 27.84 to 56.37
    99% CI 22.56 to 61.65
    Minimum 0
    Median 35
    Maximum 95

    These are better results that the overall PR sample i.e. they were selective (they said they were selective but it wasn't clear in what direction):
    Baseline (n=95):
    Mean (SD) 29.84 (17.86)

    Follow up (n=85):
    39.94 (25.21)

    Within the 17 for whom we have both figures, although overall there was a big increase, three deteriorated:

    This shows that just because a group can improve on average, it doesn't mean nobody has deteriorated.
    WillowJ likes this.
  3. Dolphin

    Dolphin Senior Member

    It is interesting to see how many of the patients were sucked in, because the therapists were sympathetic and listened to them etc (see Results: "Feeling accepted by the therapist" and also "Own acceptance of diagnosis")

    However, not all the patients were uncritical by the end:

    Valentijn and Purple like this.
  4. Sean

    Sean Senior Member

    Bunch of f**king geniuses we got working on our behalf, hey folks?
    ukxmrv, peggy-sue and Valentijn like this.
  5. Dolphin

    Dolphin Senior Member

    The authors basically blame the patients for it not working. They also say GPs can be problems.

    They don't mention that a patient can agree with the theory, or be willing to give it a try, but their body "doesn't agree"/"can't cope" with the suggestions

    I'm not sure how true this is in this case, unless they are willing for patients not to stick to the suggestions.

    However, these models for ME/CFS with manuals are prescriptive. The only model allowed is the one in the manual.

    They didn't really show that the current study showed this. They just quoted various patients, but didn't show any correlation with outcome or really talk about this i.e. didn't say: here's a patient who did well and here is what they said, etc.

    I don't recall any quotes from patients about what their GPs said. It may be true that GPs may not diagnose or refer for the reasons they give, but don't believe they have shown much about a GP's attitude influencing the outcome.

    I thought it might be somewhat interesting in terms of understanding all patients and how they engage with therapy.
    Simon, Valentijn and SOC like this.
  6. Sam Carter

    Sam Carter Guest

    This is classic cognitive dissonance at play. The psycho-social school are so confident their model is correct that when data suggests it might not be, they have to find reasons for the discordance that don't involve modifying their own beliefs.

    Imagine the panic when they found out that, having promised "100% recovery" in patients who have "no disease", their therapy was no better than a few trips to the GP.
    peggy-sue, Simon, Valentijn and 5 others like this.
  7. WillowJ

    WillowJ Senior Member

    WA, USA
    Even from the 17, we can tell something is different (e.g. not just a simple case of some improved) just from noting the change in mean and the very large change in SD.

    the SD almost doubled.

    Of course, Dolphin showed us 3 who deteriorated:

    but not all papers give such data.

    If I'm not mistaken, checking SD is something that can be used to guess at this in other papers which are not so clear about individual results.
  8. Purple

    Purple Bundle of purpliness

    Are these SF36 Physical Function scores?

    If so - a score 0f 0 can indicate that the person is housebound or chairbound and needs help with personal care or that the person is bedbound or worse. This scale does not distinguish this well , IMO.
  9. Dolphin

    Dolphin Senior Member

    Yes, SF36 Physical Function scores (I've edited previous message following your message to clarify this).

    I accept your point, but a lot of generic questionnaires will have problems and probably the floor effects are not so bad compared to many (it's certainly worse for the SF-36 role physical, where lots of people with ME/CFS would score zero).

    For anyone who doesn't know, to score 0, one would need to answer "yes, limited a lot" to all 10 of these questions:

    This questionnaire is used in a lot of ME/CFS research. For non-normalised scoring, one scores 5 for each "Yes, Limited A Little" and 10 for each "No, Not Limited At All".

    Going from 35 to 0 is a pretty dramatic deterioration.
    Valentijn and Purple like this.
  10. Simon


    Monmouth, UK
    So, the original, small study (Powell, 2001) showed spectacular improvements while the larger and more rigorous study - set up specifically to validate this approach - showed no sustained effect. The conventional interpretation of this situation would be that the bigger and better validating study trumps the initial one, and the treatment doesn't work.

    As Dolphin says, they also provided no evidence that patient beliefs were any different in the original trial.

    Thanks for posting this and the other extracts, Dolphin, really valuable to get some direct patient views.
    WillowJ and Dolphin like this.
  11. Little Bluestem

    Little Bluestem Senescent on the Illinois prairie, USA

    Midwest, USA
    Shouldn’t that be the Improving Access to Testing and Diagnosis Initiative? I would think the first thing you would want to do with medically unexplained symptoms is explain them.
  12. seanpaul


    This qualitative study aimed to establish the factors which are important for patients to engage in this novel intervention for CFS/ME within a trial....

    the findings to make recommendations for the referral process to such a service, were it to be commissioned.

    my word, PACE and CBT get millions, FINE gets millions and now PR -- the gravy train continues on the back on sick ME sufferers.

    "You MUST accept your dysfunctional illness beliefs, no you must, you must you must.....dont you want to get better.......OK I Accept.............there's a good boy"!
    biophile likes this.

See more popular forum discussions.

Share This Page