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"My thoughts about the PACE trial" (January 27) (Lucibee's Blog)

Discussion in 'General ME/CFS News' started by Dolphin, Feb 2, 2016.

  1. Dolphin

    Dolphin Senior Member

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  2. Bob

    Bob

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    I think it's an exceptionally good blog - worth reading and sharing.
     
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  3. BurnA

    BurnA Senior Member

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    Yes it's good. She covered the main issues but there are so many issues with PACE it's impossible to mention them all.
    If I'm being picky I would like to have seen a bit more on the spin and the (re)definition of recovery.
     
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  4. Invisible Woman

    Invisible Woman Senior Member

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    Definitely an interesting take from someone who used to work as a editor for the Lancet.

    I thought this was an interesting point that I hadn't seen/noticed elsewhere.
     
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  5. Jeckylberry

    Jeckylberry Senior Member

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    I agree. It's eloquently put from someone who knows what a peer review should look like.

    The David Tuller blogs included as a link are terrific.

    It's what seems to happen when people assume they are objective when they are blatantly skewing a trial to get the results they expect and want. It happens in everyday life - like 'selective listening'. Their conceit that the trial is unbiased is laughable. Everyone can see it isn't, except them. The alternative is to have to acknowledge the disease and therefore have to deal with something very challenging medically and politically.
     
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  6. BurnA

    BurnA Senior Member

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    I thought the same. Also wondered if she could have said something similar with respect cbt in that it maybe encouraged patients to be positive ( and thereby potentially report better progress ) ...but she didn't ....
     
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  7. A.B.

    A.B. Senior Member

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    After all this time people are still noticing new flaws, and the one new flaw mentioned here should be very obvious too.

    The design of the trial and the decisions made just don't make any sense... unless the goal was to make CBT and GET look good at any cost.

    Regarding effectiveness, I would be more pessimistic than the author though. The lack of long term differences between groups, and other objective measures (not just activity levels) is a clear sign that these interventions don't work.
     
  8. JohnCB

    JohnCB Immoderate

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    Very good, I thought. It's good that it is written by an insider from medical publishing. It's also good that it is written well, clear but not verbose. I hesitate about this next remark - It is also good that the language she uses is distinct from that of most ME insiders. I'm not saying that blogs written by ME insiders are bad or wrong. They are not. Mostly they are very honest and informative. However there is some commonality of style which (and I may be mistaken) conveys a lot of urgency and some anger and may alienate some outsiders. I use the "insider" blogs to inform myself so I don't mean to brief against them. What I do like about this Lucibee blog is that it covers much of the same ground as has already been covered, and very well covered, but presents it in perhaps a more palatable form for an outside audience. I think it is a good version to present to someone asking what the fuss is about, before moving on to some of the lengthier, more detailed pieces. I also like some of her snappy one liners e.g. "Or is it simply the stigma of being treated by a psychiatrist for a condition that is clearly not psychiatric?" and "Psychiatrists need to understand that their presence anywhere near this condition is now toxic, ..."
     
  9. Bob

    Bob

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    I agree. I think it's a good blog to present to any academics who are wondering what all the fuss is about and who want a brief introduction. That was my initial reaction to it anyway.
     
  10. Yogi

    Yogi Senior Member

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    This is an excellent blog. Thanks for posting.

    I understand she was formerly at the Lancet as editor. Are there many editors?
    Who is she actually and what does she do now?
     
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  11. wdb

    wdb Senior Member

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    I was wondering that, on her twitter she has 'Science defender and eco-chick. On the fence about most things. Much better view from up here.' and on another page 'Mad blonde eco-chick. Medical editor, researcher and statistician. Would rather be singing/painting but keeps being distracted by shiny things on the internet.'
     
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  12. sarah darwins

    sarah darwins I told you I was ill

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    It's good but let's not go overboard. It's regrettable that she chooses to finish with this.

    That shows a total lack of awareness of what's going on around PACE and the BPS movement, so much of which is about 'disappearing' me/cfs by subsuming it into impossibly broad fatigue-based categories which inevitably fold in other, often more transient conditions.

    I don't support being nasty to people who claim to have recovered from 'me' or 'cfs', but I don't support saying "Oh, that's nice for you" and leaving it at that, either. We absolutely have to fight against this blurring of the lines. It's killing any hope of better treatment or better research.

    Esther Crawley is currently at the forefront of this with what I personally think could be the most damaging 'research' of all, very well critiqued in the blog linked from this new thread: http://forums.phoenixrising.me/inde...g-about-prevalence-of-pediatric-cfs-me.42808/

    That project, with its internet base and it's catchy, kinda funky name, is in every sense aimed at children. It feels almost like propaganda to 'reconceptualise' the illness in the minds of the next generation. Given that Crawley is happy to include children in 'cfs' research based on questionnaires, some filled in by their parents, using no actual diagnostic criteria at all, it's no wonder informed people on forums like this one get upset and angry.

    Lucibee needs to understand that this is why people sometimes snap at someone who turns up and says "I had that. I got better." It's not rudeness. it's frustration at the wilful blurring of medical fact which that person unwittingly represents, something which has profound implications for people who do have this currently incurable illness and whose lives have been destroyed by it.
     
  13. daisybell

    daisybell Senior Member

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    IMO, there are people who are diagnosed with ME/CFS according to the more stringent criteria who do get better. We currently don't know if those people are 'cured' or just not ill currently. But we do have quite a lot of evidence to suggest that this isn't one illness. Some people seem to have an acute onset of severe illness and then do recover their health. This doesn't mean they weren't ill or that their illness wasn't what we currently define as ME/CFS. It does mean that their illness was/is not the same as mine or perhaps yours. But it isn't less valid. They are just luckier!

    Of course some people, and it's probably a significant number, may be being misdiagnosed with ME/CFS. But I don't think that we have any evidence to support the claim that it is not possible to recover from ME/CFS at this point in time (whatever illnesses ME/CFS does turn out to be).

    Of course, this isn't helpful when trying to fight against the BPS position....
     
  14. Dolphin

    Dolphin Senior Member

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    I studied full-time for 4 years at a high level. I got myself up to swimming either 40 lengths (1000 metres) (taking a break every 2 lengths) or cycling 6 miles (9.65 km) every 2 days which I kept up for over a year only missing a handful of days (for a cold and when I donated blood).
    To many people that might seem like being recovered.

    However I didn't feel recovered at the time: I noticed I forgot things more easily than my peers for example and I made more clerical mistakes than I previously did. And had to live a reduced life. And I remember people sometimes zooming by me when I cycled.

    Eventually then I relapsed after a demanding 3 hour exam.

    This causes me to wonder whether a lot of people are simply at a higher level of functioning rather than truly recovered (which to me means one has no limits on activities e.g. can play sports every day as I did before my illness; can work long hours every day as most students can do with no problems).
     
  15. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    This looks like a good paper to keep handy and printed ready to present to any doctor who thinks PACE is the last word on how to recover from ME/CFS. Her background as a former Lancet editor and medical statistician is impressive.
     
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  16. Sean

    Sean Senior Member

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    This Lucibeee blog is well worth reading. The message is getting out. :thumbsup:

    Interesting that it is the one post on her blog she is not allowing comments on. :cautious:

    Which is a pity because there are a few comments that could be made in response. Such as:

    Hmm.

    The GET result also didn't reach clinical significance as defined by either the PACE protocol (Clinically Useful Difference), or generic standards for the 6MWT.

    REF: Minimal clinically important differences in the six-minute walk test and the incremental shuttle walking test.

    Should read: ...but regrettably results from them weren’t also collected at outcome,...

    Or because it just didn't work, and may have even made patients worse, no matter how carefully it was administered?

    Any therapy that cannot be delivered safely, consistently, and where it is needed, is not a useful therapy.

    Furthermore, as a medico friend of mine told me years back, effective therapies for serious problems pretty much sell themselves. Always thought it an index of how dodgy and ineffective CBT & GET are that they have to be so heavily promoted and sold, to the point of becoming cult-like.

    We know how it was measured – by a single subjective self-report question. What we don't know is if that measure is reliable, meaningful, and measures what it claims to measure. (Almost certainly none of those.)

    But only on subjective self-report measures, and only marginally. (I think even 'modest' is too strong a descriptor to use for 15% of sod all.)

    One of the main reasons patients get angry is because even when the evidence either fails to support that theory, or sometimes completely contradicts it, somehow this is still spun as support for the theory.

    Deconditioning is indisputably a critical link in the causal chain postulated by that theoretical model. But when the PACErs finally had to admit (in the mediation paper) that deconditioning played no causal role in generating or treating the condition (in PACE, FINE, or other studies), they didn't fundamentally alter their model or therapeutic advice.

    Same happened later with the null result in the 2.5 year follow-up paper. By some opaque magical thinking that became further support for CBT & GET. Which is just inexcusable, by any possible interpretation.

    How polite and restrained and forgiving do we patients have to be under such repeat and blatant provocation, and recklessness with our health status? This is not a friendly difference with the neighbour about the best way to grow petunias. This has extremely serious adverse consequences for large numbers of very sick, vulnerable, innocent people.

    Whether foolhardy or not depends on why the population is heterogenous.

    Is it because of selection criteria lacking specificity (especially the Oxford and CDC Empirical)? Or is it because the disease itself has an innate hetereogeneity to it?

    We don't know the answer to that yet.

    We have no objective evidence that cognitive-behavioural treatments deliver genuine recoveries, or even substantial sustained improvement for a significant fraction of the ME/CFS patient population.
     
    Last edited: Feb 3, 2016
  17. BurnA

    BurnA Senior Member

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    I noticed this too but maybe it's not a bad thing. It's a well written article and more comments might take away from it. ( as is my impression on the recent David Tuller article )

    Also, it shows that the author isn't blogging about this for the sake of generating comments and therefore more page views etc.

    Besides, I am sure by now that there are enough blogs to comment on
     
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  18. Mrs Sowester

    Mrs Sowester Senior Member

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    Yep, the Tuller blog was really undermined by the EG comments, fortunately they appear far enough down the thread that many readers will probably not get to them.
    I think Lucibee's blog not opening for comments is probably a good thing on balance.

    @ Sean, could you find her on facebook? Send her a pm?
     
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  19. Bob

    Bob

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  20. Bob

    Bob

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