The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Edzard Ernst - Critiques: RCT Accupuncture for cancer-related fatigue - or PACE?

Discussion in 'General ME/CFS News' started by Firestormm, Nov 26, 2012.

  1. Firestormm

    Firestormm

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    I recall when this study was published back in October. Quite an interesting/amusing (depending on your point of view) critique of this and the way in which is was publicised.

    I came across this earlier this morning from Edzard Ernst. In his blog titled: "No negatives please we are alternative!" I have taken the following extract (date: 21 November 2012):

    Hmmm... well I wonder if he'd say the same about the PACE Trial and CBT and GET methods, application, and results? Of course not! :)

    "Adopting CBT or GET on a grand scale would also stop us looking for a treatment that is truly effective beyond a placebo – and that surely would not be in the best interest of the patient."

    Aren't I naughty? Ha! :rofl: Don't take that seriously folks! Blimey. It could be re-posted all across t'internet if I'm not careful with no context or disclaimer :D

    I digress, it's an interesting blog article I think and he's an interesting chap - reminds me of a German doctor I was seeing some time back - he was another who had a low tolerance threshold and looked like a 'mad scientist' :)

    Returning to that acupuncture study, Edzard comments thus - I mean damn you could take this to relate to PACE and CBT/GET - but only if you were feeling naughty and biased of course ;) :

    Sorry. All this humour is overriding the seriousness of daft studies like this one. 'Self-serving' I think is what springs to mind. The notion that even an RCT (hyped RCT) can be 'tailored' to produced flattering results - I mean that's... well that's... scandalous!! :)

    Back to some maths:

    Sorry about the poor attempt at sarcastic humour. Hope you don't lose the message. I couldn't resist after reading all that I have this morning.

    Will need to go through all this RCT paper and headline pronouncements myself again I think, but the argument - if it has been correctly applied which I think it has in this case (like I'm someone who can claim otherwise!) - is compelling.

    Give a patient more, and they will feel they have been treated better. Paid more attention. Taken seriously, etc. etc. etc. unless they die of course.

    Until such time as you can prove what effect your therapy/treatment actually has on (in this case) the 'fatigue' associated with cancer how can you ever claim that it works?

    And for that to happen, you'd need to better understand what 'fatigue' actually is caused by, and not operate blindly. The 'fatigue' needs to be quantified and any improvements need to be.... well you know where this is going. It isn't enough to do what has been done here.

    You also need to be able to explain that your therapy/treatment is actually capable of doing something i.e. that it is demonstrably effective and not merely a placebo.

    Oh for sure, it will get cancer patients through the doors of an acupuncturist I have no doubt. And who am I (or we) to pooh-pooh anyone who feels they have benefitted from an alternative intervention? But then, I'm not and neither is Edzard.

    This is about a seeming RCT claiming that the intervention has proven clinical significance. When it hasn't. At least not "beyond reasonable doubt" - to quote a familiar phrase.

    Fire :ninja:
     
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  2. alex3619

    alex3619 Senior Member

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    Hi Fire, all this has already been discussed in relation to PACE over the last year or so. Indeed I am heading up to analysis along these lines which is reflected in some of my blogs. What is missing from the argument though is bias (in myriad forms) and problems in rational analysis that occur with a verificationist strategy. This may indeed be poor science, but it also appears that the problems are conveniently overlooked. Add this to Zombie Science, for which my latest blog is mostly done, and the publication process itself sides with poor studies. The whole peer review process is failing far too often, as is editorial policy in major journals (I cite a case in my next blog).

    The really alarming thing though is that doctors, researchers, reviewers and editors are not making more noise about this. Is silence consent? Or is it just ignorance or being too busy in the modern world to stop and smell the aroma of the research?

    Bye, Alex
     
  3. Firestormm

    Firestormm

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    I suspect in the case above of alternative medicine - it is the sound of tills ringing and the air of (false) legitimacy that drives this kind of 'research' forward, Alex.

    BTW you might also want to read some of the comments attached to this piece from Edzard. There weren't many last I checked, but they were predictable.
     
  4. alex3619

    alex3619 Senior Member

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    Hi Firestormm, I did read the comments.There are only a handful.

    A further point of what you quoted from my in post 3 is that such a financial motive does not apply to all the doctors and researchers who are ignoring similar failings in medicine. As I will report in my next blog, this now extends to some editors of major medical science journals. Now its not surprising that most doctors, and even most researchers, wont find the bad science and comment - so much of it is outside their field, or they are too busy, or whatever. It should be surprising that editors and reviewers of medical journals don't always respond. What is really surprising is just how pervasive this seems to be.This could be because I hear of selected instances that are discovered, and so this may not apply more broadly.

    Now psychological researchers can be congatulated on at least recognizing many of these issues and trying to address them. Similarly the move to put science back into "evidence" based medicine is a good move, as are other proposals that have been discussed recently to counter bias in scientific research.

    Decades ago most science funding was from government. Now its from companies. This alters the truth dynamic to a profit dynamic. It only takes a moderate percentage of studies to be biased to start to skew science into Zombie Science.

    I suspect that a pervasive issue is a culture of covering up, of keeping the medical profession from disrepute. The problem is that eventually a lot of this will come out, and the entire profession may be brought into disrepute. In order for this not to happen medical practitioners have to engage with the research ... and I am not just speaking about ME.

    Bye, Alex
     
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  5. Esther12

    Esther12 Senior Member

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    Ta Fire. Noted for future reading.
     
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  6. Esther12

    Esther12 Senior Member

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    So many of the problems identified by those criticising alternative medicine do also apply to how CFS has been treated by those claiming to represent 'evidence based medicine'. Sadly, I think that 'CFS' is just taken less seriously, so people are less concerned. A lot of people also prefer to think that patient concerns are entirely related to 'anti-psychiatry' or 'stigma', rather than taking the time to looking laboriously through the evidence, and seeing how it has been spun by those promoting particular treatments.

    Hopefully we'll be able to get some more unpublished data released, and that will help clarify things:

    http://forums.phoenixrising.me/inde...d-releasing-data-on-recovery-from-pace.20243/
     
  7. alex3619

    alex3619 Senior Member

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    The problem is alternative medicine is outside the mainstream, but psychobabble is accepted mainstream dogma. If they acknowledge it is poor, misleading or downright wrong, then its all the responsibility of the medical systems who should have stepped in decades ago. They have failed, systematically, over generations. No, that couldn't happen, surely not ...
     
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  8. Esther12

    Esther12 Senior Member

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    His latest blog post seems to include relevant points for us too:

    http://edzardernst.com/2012/11/how-to-fool-people-with-clinical-trials/

    Generally, I'm not that interested in the debunking of alternative medicine (I just never took it seriously enough to think it needed debunking), so I think I've slightly glossed over people's posts about Ernst and others, but so many of his points are relevant to problems with poor mainstream research too.
     
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  9. Esther12

    Esther12 Senior Member

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    How lazy my post was compared to Fires! I've shamed myself.

    Here are some notes, but they're all pretty obvious points, so I expect that you'd be better off just reading the piece for yourself.

    The impossibility of truly blinding cognitive and behavioural interventions seems like more of a problem to me than many people like to realise. Generally there seems to be a desire to present the placebo affect as a real treatment - it has a serious impact upon improving people's health; rather than simply being patients attempting to speak more positively about their condition in certain circumstances (once they've spent time with a therapist who they like and believe is working towards their recovery, a belief that they themselves are performing tasks working towards their own recovery, a belief that 'positive thinking' is helpful, etc). I know this is all contested, controversial and uncertain, but with CBT for CFS, we do have some reason to think that the improvements it can lead to in questionnaire scores do not represent real improvement in patient's health: from PACE, there was no significant improvement in employments levels or patients scores for the 6 minute walking test (the closest things to objective measures of capacity that we had). We have the three RCTs which found CBT improved questionnaire scores, but did not lead to improvements in the amount of activity patients could carry out as measured by actometers, or improvements of objective measures of neuropsychiatric performance. To me it seems likely that relying on questionnaire scores will exaggerate the value of cognitive and behavioural approaches.



    One problem with PACE is that it's quite possible that there is no useful treatment for CFS. The version of Pacing that they were testing involved encouraging patients to only do 70% of what they felt comfortable doing... that sounds likely to be unhelpful to me.

    Also, in my view 'pacing' is simply what one has to do if one is sensible and suffers from reduced capacity. I'm sceptical about the value of creating 'expert pacing therapists' who should be paid to manage patients. (I know others disagree). Surely, given the poor results for GET... most GET patients ended up pacing? If they really were able to continue increasing their activity levels, we would have seen better results.

    This sounds so much like the editorial which accompanied PACE.

    30-40% recovery rate?

    The results from PACE were so poor that I think we can be confident that they were not tampered with.

    Hmmm... that seems a rather generous interpretation of the cause of these problems.
     
  10. alex3619

    alex3619 Senior Member

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    Yes Esther12, APT, adaptive pacing therapy, was a non-therapy. With that as a benchmark doing Tequila shots would probably show up as an effective therapy.

    Are you sure this guy isn't specifically writing about the PACE trial? ;)
     

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