Decernimus Ergo Summus: Citizen’s Assemblies

July, 29, 2019 | 24 Comments

Comments

  1. Your Raleiging calls are a tribute to all those who have lost their lives. As Enough doctors are not going to help to sort out this mess by filing a report – what about asking people who contact you or read the blog ,to request their medical notes and send you a copy? Also a small citizens group might be set up together with the clinicians at Rxisk to look for any common facts which which might be revealed in the history. , There is no obligation to give a reason for requesting medical notes mainly a request just goes to the practice manager. There may be a charge but it’s worth it.
    Would it be useful to include some reports by people who have had a good experience? That might counter the anti- medicine accusation somewhat.

  2. ‘There seems to be a strong belief in medicine that medical professionals know best. Medical professionals seem to ignore human knowledge external to medicine. Centuries of other knowledge is ignored as if it does not exist. Medical knowledge is consequently populated by metaphorical reinvented square and triangular wheels [but only patients have to ride on them].’

    ‘A lawyer might explain that Courts accept an expert’s opinion to decide disputed propositions. This is when a Court [in legal theory] lacks the expertise of the expert and so expert opinion evidence is admitted. This is an exception to the general rule that only witnesses of fact can give evidence.’

    https://www.bmj.com/content/366/bmj.l4606/rapid-responses

    23 July 2019

    Clifford G Miller
    Lawyer with science background

    Distinguishing opinion from evidence in guidelines
    https://www.bmj.com/content/366/bmj.l4606

    Using experts as a source of evidence has several problems and may seem at odds with evidence based medicine.

    “Ah but, this is hearsay” …

  3. A naive question no doubt, but what IS it that motivates so many academic glove puppets to dance to the fraudulent tune.
    Is it money,
    is it hopes of rising to greater academic heights,
    or are they just so stupid that they actually believe what their handlers tell them to say?

    Surely they realise that in the end, however long it takes, fraud will be seen as such. Is it therefore total lack of conscience? If so, when did the conscience disappear? Was it in medical school where professional arrogance became the norm? Is this just the way our broken society functions now. Honour is nothing, so-called ‘wrong doing’ doesn’t count for a hill of beans. Surely in medicine, it wasn’t always like this. People had a calling to save lives, to be trusted, respected. Now doctors are trusted less than estate agents or politicians. One very rarely today hears someone in the community talking about their wonderful GP. Whereas in 1979, the opposite was true. So, there’s been a massive turnaround in 40 or so years. Is this entirely due to the birth of RCTs?

  4. From The BMJ – Article Redefining the ‘E’ in EBM

    “By the law of Garbage In Garbage Out, whatever we produce in our reviews will be systematically assembled and synthesised garbage with a nice Cochrane logo on it. One major problem is our ignorance of the presence of garbage, as its invisibility makes its distortions credible and impossible to check. This is how some of us happily signed off a Cochrane review with findings which had been completely and invisibly subverted”

    https://www.researchgate.net/profile/Lars_Jorgensen15/publication/323666903_Redefining_the_'E'_in_EBM/links/5ab89ed9a6fdcc46d3b890f2/Redefining-the-E-in-EBM.pdf

    Putting this another way, systematic reviews/meta-analyses are the top level of ways of covering up fundamental problems – which is of having unreliable evidence and evidence which might be reliable but we cannot really tell. RCTs do not deliver reliable evidence despite claims about randomisation creating a theoretical “gold standard”. So layers are added over the top of the problem and people are being told these help.

    RCTs in practice they do not provide evidence we can be confident is reliable regardless of how much BS is smeared over the top to claim they are the theoretically most astounding source of evidence since the radiance from the previous “Gold Standard” – Exodus 34:29 “… when Moses came down Mount Sinai carrying the two stone tablets inscribed with the terms of the covenant, he wasn’t aware that his face had become radiant because he had spoken to the LORD.”

    Even if RCT evidence were to be reliable it is too vague to provide certainty that a treatment will be successful in any particular patient.

    The solution to that? Another layer. The Number Needed to Treat. When its a big number for one success that is a magnified problem – compounded by not merely a failure to report adverse events but regulators who don’t and who publish safety analyses which claim safety when not true.

    The top layer is the systematic review. But it turns out they have their own problems too – in particular it is more like cooking than science. The are based on poor quality evidence and end up aggregating poor quality evidence into a poor quality review. Judgement is applied in deciding what adjustments are needed for which variables. These adjustments are not made plain in the published reviews nor how they are calculated nor how they are applied – so no one can tell or check for themselves. In addition all is buried under such complex layers of statistics the average medic has no chance of making sense of any of it in any event.

      • Annie, it is interesting to see the “Hamilton Depression Scale” [HDS].

        “The Hamilton Depression Rating Scale (HAM-D) has proven useful for many years as a way of determining a patient’s level of depression before, during, and after treatment. It should be administered by a clinician experienced in working with psychiatric patients.”
        https://www.psychcongress.com/hamilton-depression-rating-scale-ham-d

        And yet the debate about whether SSRI’s do anything appears to continue.

        So if the HDS was a useful indication there should be no debate. But because there is a debate the HDS seems to be like believing in Saints and miracles and Santa Claus. Clearly, its existence and use is testimony to a fervent belief in it.

        So we are expected to believe that because there is a fancy name for a “scale” that it means anything and that because a trained medical professional comes up with a number based on applying the scale that is reliable science.

        It seems to be pseudo science which the medical professions construct to give a veneer of scientific respectability to treatment practice and to convince the rest of us they have scientific evidence to prove what in some cases may be possibly worse than quackery.

        There is also a significant problem testing alleged pharmaceutically effective products against placebo. They should be tested against placebo and against no treatment.

        Whilst the most recent Cochrane systematic review finds almost no evidence to support the view that the placebo effect is a real effect [but it does find some!] there is literature recording the placebo effect as being a real effect with real beneficial outcomes. Well, we already know that systematic reviews are unreliable and a sticking plaster over the problem that RCTs are not reliable.

        So here is the problem with placebo trials. If a supposed “gold standard” but typically unreliable RCT is based on a placebo trial, showing a marginal effectiveness [let’s say a Number Needed to Treat of 100] what if the placebo has a Number Needed to Treat of 2. If that were the case a physician should always opt for placebo as the first choice of treatment – and with no adverse effects.

        But because trials do not include no treatment there is no placebo quotient to compare efficacy and effectiveness of the alleged drug treatment against placebo.

        In other words, placebo is always assumed to be the null hypothesis whereas no treatment is.

  5. Novartis CEO: ‘We tried to do the right things’ in FDA data scandal

    By Damian Garde @damiangarde
    August 7, 2019

    https://www.statnews.com/2019/08/07/novartis-ceo-we-tried-to-do-the-right-things-in-fda-data-scandal/?

    Novartis CEO Vas Narasimhan on Wednesday defended his company’s decision to wait three months to tell authorities about falsified data submitted to the Food and Drug Administration, saying the company “tried to do the right things” in the process.

    He also said Novartis (NVS) was now “in the process of exiting” a small number of scientists at AveXis, Novartis’s gene therapy business, who were “involved in these data inaccuracies.”

    …a company that has faced allegations of bribery and charges of illegal marketing in recent years.

    “We are committed to rebuild trust with society, deeply, for me personally all the way through the leadership team and the broader organization,” Narasimhan said on the conference call. “It’s a long road, and sometimes it’s bumpy.”

    Novartis faces another crisis. And for CEO Vas Narasimhan, this time is different

    https://www.statnews.com/2019/08/07/novartis-faces-another-crisis-and-for-ceo-vas-narasimhan-this-time-is-different/?

    Novartis CEO Vas Narasimhan began his tenure with an inherited scandal. Now he’s got one all his own.

    The revelation on Tuesday that AveXis, Novartis’s gene therapy division, submitted falsified data to the Food and Drug Administration is at the very least a blemish on the brief reign of Narasimhan, a rising figure who took over in early 2018 with a promise to change the culture at the Swiss drug maker. But it also threatens to become a much bigger scandal.

    and sometimes it’s bumpy.” …

    • John -I’m not sure whether the spokesperson on R4 am news worked at the Royal Free or was bigging it up for the interview as part ofhis new job on AI in the NHS- whatever, another opportunity for treating people with contempt was used to sweep their record of handling data under the carpet by not mentioniong the contract between Royal Free and Google Deep MIND . 1.6million medical records were handed to Google a few years ago without consent and included personal details such as addresses, abortion details HIV status. They still have a contract with google. he stated that information would be ‘shared’ with ‘appropriate permissions’. He much admired the work going on at Chase Farm but didn’t mention they had been taken over by the royal free. So three related hospitals ,including Barnet, in N London are linked in with UCL .They are part of UCL which has already developed AI which ‘flags up people who are LIKELY to miss an appointment ….’ but hard to find any other info which will identify what more they are doing. Oxford NHS has developed AI which is being ,or is already developed, to predict who is LIKELY to develop bipolar disorder (New Scientist). Today an NHS trust in the West country hasbeen outed for releasing the personal details in public, including addresses, of 40 people with HIV
      Just skimming through a few sites it names several people who used to work at UCH and have now left to work for private companies. While some of us are out innocently picking bilberries – those who are making careers and vast sums of money are cherry picking intimate private information to an extent few of us understand. The algorithms they are besotted with are seen as a waste of money by many critical medics and AI watchers who comment on the web – when medical robots rule hospitals and surgeries with their mini computers at hand – we will all be paying google via technicians trained not to think but to use de humanising technology

        • Well John – the appalling dump was closed down and then re- opened and ‘aquired’ by the Royal Free in it’s empire grabbing excercise in N London – and is now an ‘Exemplar’ a ‘Digital’ hospital none other, enjoying millions of start up cash and the advantage of UCL’s .patronisation,
          see’- Digital Health News -Behind the Scenes at a GDE – Digital Health visits Royal Free NHS-FT. The RF kindly arranged the visit to it’s ‘aquisition’ Chase Farm to show off it’s progress in digitalising individuals data . The clinicians can ‘even choose their own preference for the colour used on their screens’ thank goodness for that…

          Here’s an interesting article to show how it’s all come about – New Scientist by Val Hodson – ‘Did Google’s NHS Patient Data Deal Need Ethical Approval?’ 13 May 2016. Talk about eels in a bucket.

          I’ve made an FOI request to RF to ask how individuals are asked to give ‘appropriate permissions’ for use of their data by Google as no mention of that little detail in articles.

  6. Yesterday, AlterNet published this article by Ralph Nader. As an American political activist who has been involved in many consumer protection initiatives, he states “Big Pharma’s trail of greed, power, and cruelty gets worse every year. Its products and practices take hundreds of thousands of lives in the U.S. from over-prescriptions, lethal combinations of prescriptions, ineffective or contaminated drugs, and dangerous side-effects.”

    Know your Drugs

    Ralph Nader’s message to Congress: Big Pharma’s trail of greed, power and cruelty must be stopped

    https://www.alternet.org/2019/08/ralph-naders-message-to-congress-big-pharmas-trail-of-greed-power-and-cruelty-must-be-stopped/?

  7. These are not the times to intervene systemic failure in science.

    In a time where we silence critics by using ‘democracy’, ‘democracy’ only applies to those who allready follow the set path, someone else (including scientists, politicians) decides what you should say, think and know.

    A Trump quote: “Look at Sweden….”

    My beloved country is falling into ruins simply because we aren’t allowed to say what is happening.

    ‘Fake News’ is an umbrella term, used by both sides.

    Scientists and psychiatrists can still claim that “RCT’s have shown….”, everything else is seen as fake news.

    I’m leaning towards that we do not want to know, we want things to stay the same.

    And we certainly don’t want to be alone when criticising.
    Ove2019

  8. Lock up your daughters the vaccinators are needing another cohort of women to inject and there are zillions of young women all over the world vulnerable to being targeted by a vaccine which is being bigged up all over the media with different spins. Imperial college claims it will be ready in 5-7 years even though trials have not being completed – so presumably no such claim could be made. Research identifies 20 women out of the whole population took part in trials with hefty doses of the vaccines. Best of luck, sincerely, to them when they will already be loaded with other vaccines.
    https://www.theguardian.com/society/2019/aug/12/chlamydia-vaccine-clinical-trial-cure-sexually-transmitted-infection#img-
    first time to try a link so hope it works but loads in Lancet, New Scientist Guardian – possibly written by the medical writers on John’s list above.

  9. Hi Ove – I remember when Sweden used to be talked about as an example of a shining sucessful modern democracy as is/wasUK. But the understanding of democracy is screwd when in both Sweden and UK there is massive inequality and no way of kinowing how things are being run behind the scenes. For example here the idea of democracy was hugely underpinned by having the National Health service free at the point of delivery for everyone. The web of private-public partnerships which have crept all over the NHS now is one way democracy has been eroded, for example by the introduction of health ‘partnerships’ with companies which have tentacles all across Europe. Most of us have very little idea of how they operate but one I notice because of your comment is a private company called LIVY (it’s named SPRY in Sweden or word meaning ‘life’)
    )-https://digitalhealth.london/gp-video-consultation-livi-nhs/ They say 5% of people in Sweden use the app needed to access video consultation, 1 in 4 over 50yrs old. Many of us including me, don’t even have devices which can use apps, or GPs who are using the schemes. If we use LIVY our consultation result is still referred back to the NHS but I am not clear who holds all our information . LIVY requires amongs other details, passport details, photos, leaving massive loopholes for errors and fraud. It’s been set up with no consultation as far as I can see via the web – democracy is bust all over the world even if we are not getting physically beaten up in public.

    • Yea, Sweden has been synonomous with with a very good side of ‘democracy’. And as with many things, it worked until pushed overboard. Sure people have been complaining about taxes and so on, but behind that we built a welfare and a working society. From kindergarten to the elderly, even our justice system was seen as ‘fair’. But slowly, since about the crazy boom in the late 80’s, it has been torn down. Privatization. And yes, it has been seen more and more in healthcare, but they held out much longer than telecommunications, transportation and other vital societal functions.

      KRY, is probably the name of the app you fetch for. “Kry” is hard to translate, its sort of a mix of being “spunky and perky” and the more general “healthy”.

      We’ve gone through several ‘updates’ to the ways we contact healthcare, each one dumber than the last. The old telephonequeue was replaced by automatic services, then came the press “button 3 for prescription renewal”, and lately you must enter your social security numbers and a health professional will call you. Not all that easy for the elderly and impaired.

      I have just helped my dad getting an ‘electronic id’ on his phone, which in turn is written about daily in the media concerning ‘identity theft’.

      The similarities between Britain and Sweden goes deep, much deeper than I realized. A root cause for that might be a very early ‘companionship’ between swedish television and the BBC, we have been molded in the same form.

      I feel strongly for Sweden, of course, but I feel even worse for my parents generation who paid their taxes for 50 years and built our society after ww2. Only to end up poor as #¤%& for their retirement, while ‘new swedes’ gets homes built for them.

      Social democracy falls under the weight of their own good deeds. There should not be anything wrong with tending to your own first.
      Ove.

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