Sense about Science: Follow the Patient

June, 23, 2014 | 6 Comments

Comments

  1. David,
    It seems like the doctors are becoming ‘autistic’ the same as the psychiatrists, soon there’ll be no doctors left that can practice medicine. You’ll notice also that the ‘free money’ is disappearing in the west, and the middle class are becoming the lower middle class in earning capacity. Under these pressures people have a tendency to fit in.

  2. Fantastic post. Your Lord Denning example is a good one, but there’s a better one from The US Federal Register. In discussing quality issues with a polio vaccine, the FDA let the cat out of the bag:

    “any possible doubts, whether or not well founded, about the safety of the vaccine cannot be allowed to exist in view of the need to assure that the vaccine will continue to be used to the maximum extent consistent with the nation’s public health objectives.”

    It’s from the Federal Register, June 1, 1984. I doubt anyone in an official capacity has spoken so candidly since, and probably won’t again.

    http://www.beyondconformity.org.nz/_literature_80498/Federal_Register_1984

  3. I recall a Nursery Rhyme I used to say to my children – “I do not like thee Dr Fell, the reason why, I cannot tell, but this I know and know full well, I do not like thee Dr Fell…but now I know I do not like thee Dr Pharma, the reason why I know full well, I came to you in trust, in so much trust, you were Dr who First Does No Harm, I took your poison because you told me to, I asked about side effects – you said there are a few but in my case there was nothing to worry about, I believed you Dr “First Do No Harm” but then I knew and knew full well Dr Pharma.

  4. Great series of blog posts about Sense About Science and the issues surrounding data transparency.

    The lack of proper engagement and dialogue from Ben Goldacre and his cohorts speaks volumes to me…

  5. While perhaps only peripherally related to this blog, the mention of the control of information, and Fiona Fox’s work at LM, may mean this is of some interest. A comment I made on Fiona Fox’s SMC blog last week has just been removed. While those associated with Living Marxism often seem keen to pose as radical defenders of free speech and open debate, they really seem to have quite firm ideas on what views should be allowed to be expressed.

    This is the comment which was previously available here: http://www.sciencemediacentre.org/the-science-side-of-the-story/

    June 27, 2014 at 11:33 pm

    Unfortunately, SMC briefings can serve to not just omit important information and views, but also to seriously misrepresent the evidence.

    In a briefing on the PACE trial for CFS it was claimed that CBT and GET led to a third of patients getting ‘back to normal’. What was not explained was that the researchers had re-defined (post-hoc) what was ‘normal’ in such a way that patients who had been classed as suffering from “severe and disabling fatigue” at the start of the trial could report a worsening of all symptoms during and after treatment, and yet still be classed as “back to normal”.

    When patients were justifiably angry about the way in which data had been misrepresented, the SMC then started a campaign to try to portray critics as being motivated by militant anti-psychiatry (with the hint that violence was never far away). There was no mention of the fact that while PACE researchers attempted to portray FOI requests as being a form of ‘harassment’, they were refusing to release their data in the manner which they themselves had laid out in their own published protocol.

    For more detail and references, my comment can be seen here: http://www.bmj.com/content/347/bmj.f5963/rr/674255

    For an example of a recent attempt to get around the PACE researchers refusals, and finally see the release of this important data see: https://www.whatdotheyknow.com/request/selected_data_on_pace_trial_part#comment-51344

    In my above comment I explained that “we do not currently have compelling evidence that CBT or GET are more effective medical interventions for ME/CFS than homeopathy, despite some of the claims made by proponents.”

    Even though there is a strong consensus amongst homeopaths that their treatments are effective, it would still be important for any SMC briefing on homeopathy to include critics and skeptics. In the case of CFS, the SMC policy seems to be to represent only the views of those with a vested interest in the efficacy of CBT and GET as treatments.

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