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Former BMJ editor Richard Smith's blog post on PACE

Discussion in 'General ME/CFS Discussion' started by Sidereal, Dec 16, 2015.

  1. Sidereal

    Sidereal Senior Member

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    Richard Smith who was the editor of BMJ until 2004 wrote a blog post regarding KCL denial of Coyne's request for PACE data.

    http://blogs.bmj.com/bmj/2015/12/16...lege-should-release-data-from-the-pace-trial/

    The piece trots out every canard and backhanded insult you'd expect.

     
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  2. worldbackwards

    worldbackwards A unique snowflake

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    Earth
  3. Dolphin

    Dolphin Senior Member

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  4. Tom Kindlon

    Tom Kindlon Senior Member

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    I was active at the time Richard Smith was BMJ editor and it still rankles, so I've posted a few tweets:









     
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  5. Tom Kindlon

    Tom Kindlon Senior Member

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    (Can only have five tweets in one PR post)
     
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  6. chipmunk1

    chipmunk1 Senior Member

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    They don't like being offered quackery masquerading as medicine. Many are so desperate for a cure that they would do anything to get relief of symptoms and that would surely include psychiatric treatment.

    Many have tried exercise/antidepressants/positive thinking and know from personal experience that this doesn't work. Patients don't like being offered ineffective cures.

    In an age where almost 10% of the population takes antidepressants, i don't think that is the main problem here.

    Interestingly it is often psychobabble that implies that there is a moral weakness.

    Positive thinking can overcome CFS? Wasn't that what some found? That would imply that sufferers negative thoughts are causing or maintaining the illness? is that a positive character trait?

    Benefits can make patients worse? False illness beliefs? Neurasthenia? Is that a language that implies serious illness?

    It is not psychological. I don't know how often i read this.

    It's just a coincidence that the proposed treatment is always psychiatric.
     
    Last edited: Dec 16, 2015
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  7. nasim marie jafry

    nasim marie jafry Senior Member

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    As I said on Twitter, is good he is asking for release of PACE data but was it really necessary to stick the boot into ME patients first, trotting out the ME terrorist cliche followed predictably by the notion that pwME have stigma about mental illness..yawn, yawn... So, yes, I find it hard to get excited by his request for data release. He is not exactly on our side.
     
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  8. Sasha

    Sasha Fine, thank you

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    He doesn't have to be on our side. What's key now is the release of the PACE data. Once that's happened, all the rest will come falling down.

    This is a :star: MASSIVE WIN :star: getting the former editor of the BMJ onside for data-sharing and we should be bigging this up all over the place.
     
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  9. nasim marie jafry

    nasim marie jafry Senior Member

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    Well I certainly hope so, Sasha, but I am still not prepared to turn a blind eye to what these doctors/editors have done. I can welcome the progress without making a saint of the man. Where are you bigging it up, out of interest? I think is getting a lot of attention on Twitter, which is great...oops.. sorry, I had not finished...it's just quite hard to draw attention to his post on releasing the data without also drawing attention to his deragotary/misleading comments on pwME. We don't want to be preaching to converted, we want newcomers on our side and this is tricky, in this instance, therefore. But his stance will certainly make waves where it matters, I think. And that is to be welcomed.
     
    Last edited: Dec 17, 2015
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  10. charles shepherd

    charles shepherd Senior Member

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    I have just responded as follows:

    Five quick points:

    1 Richard Smith is mistaken when he states that The ME Association (MEA) has 'several times' described the BMJ as the 'worst medical journal in the world'

    Yes, The MEA has been very critical for a considerable period of time on the way in which the BMJ has covered the subject of ME/CFS, and the choice of people it has commissioned to provide material and editorial comment on the illness. But we have never used this description.

    In fact, I was very happy to ask Fiona Godlee, currently editor in chief at the BMJ, to chair the meeting at the Royal Society of Medicine on controversies surrounding ME/CFS that I helped to organise earlier this year:

    http://www.meassociation.org.uk/201...-health-professionals-on-mecfs-18-march-2015/

    I think an apology would therefore be appropriate


    2 Having worked in hospital psychiatry, I know that mental illness is just as real and horrible as physical illness

    Our criticism is with the way in which a group of mainly psychiatrists have put forward a largely psychosocial model of causation and management (ie abnormal illness beliefs and behaviours associated with deconditioning treated with cognitive behaviour therapy/CBT and graded exercise therapy/GET) that is flawed; is not helping a large proportion of patients (in the case of CBT); makes a significant proportion worse (in the case of GET); and has for a long period of time dating back to the early 1980s deflected scientific interest and funding into research aimed at understanding biomedical aspects of what is undoubtedly a wide spectrum of conditions involving both clinical presentations and disease pathways

    To quote from my recent article in the Daily Telegraph:

    'The argument here is not with mental illness, which is just as real and horrible as physical illness. As with any long-term illness, some people will develop mental health problems where talking therapies can clearly be of help.
    The argument is with a simplistic and seriously flawed model of causation that patients know is wrong and which has seriously delayed progress in understanding the underlying cause of ME and developing effective forms of treatment.
    Opening the 2015 research collaborative section of neuropathology, Jose Montoya, professor of medicine at the University of Stanford, said: “I have a wish and a dream that medical and scientific societies will apologise to their ME patients."
    I agree – the time has come for doctors and scientists to apologise for the very neglectful way in which ME has been researched and treated over the past 60 years. Doctors need to start listening to their patients and there must now be increased investment in biomedical research to gain a better understanding of the disease process and to develop treatments that these patients desperately need.
    Full article: http://www.telegraph.co.uk/news/hea...octors-to-apologise-to-their-ME-patients.html

    3 Abuse and harrassment (which I have personal experience of as well) has no role to play in this debate and I have been forthright in my condemnation of people who use this tactic

    4 The paper just pubished in Lancet Psychiatry, which examines data on long term outlook from the PACE trial, found very little difference between CBT, GET and Adaptive Pacing

    If you want to look at patient evidence (1428 respondents) on these three approaches to management please read the summary of our latest MEA report:

    http://www.meassociation.org.uk/how-you-can-help/fundraising-support/

    5 I welcome the fact that Richard Smith is making it very clear that the research groups involved are making a serious mistake in refusing to release the PACE trial data that is being requested and that they are going against basic scientific principles


    Given the growing strength of critcism on this issue from patients, clinicians and academics it looks as though the Canutes at King's College would be wise to stop digging and give way to what is a perfectly reasonable request

    Dr Charles Shepherd
    Hon Medical Adviser, MEA
     
    Last edited: Dec 17, 2015
  11. charles shepherd

    charles shepherd Senior Member

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    History lesson….

    For overseas readers who are not familiar with King Canute, who Richard Smith refers to at the end and compares to KCH:

    http://www.bbc.co.uk/news/magazine-13524677

    Interestingly, it looks as though King Canute has been misunderstood !
     
    Last edited: Dec 17, 2015
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  12. jimells

    jimells Senior Member

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    It does seem rather "passive-aggressive" - is that a sign of "mental illness" or a very weak political position?
     
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  13. jimells

    jimells Senior Member

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    So now he is just making up malicious gossip?

     
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  14. EllenGB

    EllenGB

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    I should like to draw people's attention to the forgotten READ report, where an independent physician with no knowledge of ME was asked to examine the coverage of the illness in the British medical journals. She found significant bias, especially in the BMJ and even wrote a letter about it when the BMJ tried to rubbish her findings. This was published.

    It was me, as editor of InterAction, or Medical Editor, who awarded the BMJ the prize for the worst medical journal. I had good reason e.g paper with Dr Stouten which was a result of correspondence with Dr Smith. We wrote it all down.

    I also think I know about the call referred to in the blog. A professional who became aware that he was about to publish something deeply flawed tried to save his butt. That's the short version. It wasn't about his attitude to ME but about one study. The fatal flaw is still there for all to see (randomization had failed and the people getting the CBT had evidence of more psychological issues. Ergo, that might have explained why CBT was more effective in that group than the controls). And there were other oddities. At least one patient admitted to doing what the researcher wanted so he would sign her sick notes. I received a letter from a person who wanted to participate in the trial but wasn't allowed to as she didn't have psychological problems. I have kept the letter. All these things and more could have influenced the findings.

    I discovered this when advising a member of the GMC who was investigating the team at Oxford and I kept an eye on things for a while. I recall feeling that the patients seemed very afraid. They were not like people who had participated in any other study. One brave person told me to take everything said and written with a generous pinch of salt. The individual rang Dr Smith at home but he wasn't there so left a message with his wife (on the assumption that she was intelligent and could take down a short message i.e. to take a thorough look at the paper from Oxford to avoid what had happened at the Lancet. (Dr Smith was one of many who had criticised the editor of the Lancet when he published what was a similar flaw in the Bristol Cancer Study. It seriously affected his reputation. The person who rang Dr Smith wanted to avoid something similar from happening to him. Hence the ref to avoiding something unpleasant. It had nothing to do with anything else. (That the BMJ published no research paper on non-psychological aspects of ME since 1995 speaks for itself). I think other scientists might have also have warned him something odd was going on so it is possible his description relates to one of them. But given he wrote about the case above in one of the newspapers shortly after suggests I've got the right one.)

    The positive was the intention to alert Dr Smith and let him have the choice. He was lucky. While the oncologists gave the Lancet a hard time over the cancer research, specialists and journalists were not quite as angry when something similar was published in a RCT on CBT for ME. The professional was very discreet and the motives were sound. Instead, the person was described as hysterical in newspapers and now this. Perhaps given what happened, they should not have bothered. NB It was a health professional, not an activist.
     
  15. Aurator

    Aurator Senior Member

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    That's a nice prospect, and it's quite possible it will happen.

    A more depressing prospect, and still quite possible, is that funding will be sought and obtained to stage trials of a similar but improved nature, which the proposers will sell on the basis that PACE, like all groundbreaking trials, was the unfortunate victim of teething troubles, and it would be financially irresponsible not to exploit the groundwork that PACE laid down by not following it up with methodologically more robust trials in the future.

    Repugnant though it is to any thinking person, it's not inconceivable that this sort of sales pitch will get a positive reception in certain influential circles.
     
  16. Kyla

    Kyla ᴀɴɴɪᴇ ɢꜱᴀᴍᴩᴇʟ

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    @EllenGB
    would you consider writing something similar in the comments on the actual article?

    would be nice for others outside the ME community to see the spin put on this sort of thing to accuse patients
     
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  17. Sasha

    Sasha Fine, thank you

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    I think that PACE have tarnished their brand so badly even at this stage that that's pretty much unthinkable.

    And PACE was supposed to be the definitive test after lots of smaller, weaker studies. If PACE couldn't do a decent job with £5m, I can't see the MRC chucking more money at it.
     
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  18. worldbackwards

    worldbackwards A unique snowflake

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    Possible, but it isn't so much that PACE wasn't methodologically robust to start with, more that it was increasingly weakened as time went on for reasons best known the the trial authors.
     
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  19. Jonathan Edwards

    Jonathan Edwards Senior Member

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    I agree, I cannot see anyone being able to stomach the idea of another trial of CBT either as investigator or funding body. CBT may take a time to die but nobody is going to try to revive it.
     
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  20. Jonathan Edwards

    Jonathan Edwards Senior Member

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    Actually PACE wasn't methodologically robust to start with - it was hopeless from the start. No reputable drug company would invest money in a trial of this design because they would know that for any 'physical' treatment a trial of this sort would be rejected out of hand by regulatory authorities. What I think will become clear from PACE is that adequate methodology for trials of psychological treatment simply does not exist at present. The fault actually lies mostly with the funding bodies and referees who should never have recommended that PACE was set in progress.
     
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