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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Retracted autism study an 'elaborate fraud,' British journal finds

Discussion in 'Other Health News and Research' started by JPV, Jan 6, 2011.

  1. Angela Kennedy

    Angela Kennedy *****

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    Thanks Floydguy. I think you are right about the same sort of tactics being used on us. there's a few examples I could think of- even about people's taking part in advocacy etc.

    I've been looking around since this news came out - it's an absolute mob frenzy /kangaroo court out there. The level of unreason is frightening. I feel like Piggy in Lord of the flies at the moment. Any second my skull is going to crack on the rock and my brains spew out... over-dramatic I know (lol!)- but I'm genuinely horrified at what's being propagated in the media about this, let alone what's going on the Wikipedia talk pages! The Piggy/Lord of the Flies analogy seems completely apt: it's another Death of Reason scenario.

    For much needed balance - I would really recommend people read this response by Age of Autism/Cry shame

    http://www.ageofautism.com/2011/01/cryshame-response-to-bmj-report.html

    i think it raises some issues I was concerned about (and much more eloquently), and some others.
  2. Angela Kennedy

    Angela Kennedy *****

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    And now I see Brian Deer and Fiona Godlee running around naked crying "Kill the pig! Kill the pig!"

    I'll have to cast out my mind's eye now.
  3. WillowJ

    WillowJ Senior Member

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    It's difficult to make a decision one way or the other without better information.

    There are a number of problems we're dealing with, besides the possibility of bias in the BMJ.

    For example, chart notes are not automatically omniscient. It would be super-nice if we had a device that could transfer accurate info directly from the body to the chart, but the fact of the matter is an actual person, usually short on time, and subject to lapses of attention as well as to moods and biases, has to enter the info.

    I've often had doctors write what they wanted to believe instead of what I'd told them. They've written in symptoms which I've specifically denied, failed to note obvious (serious!) signs, denied symptoms which I confirmed, etc.

    So one would have to interview the parents of each child in question, rather than relying on chart notes alone.

    These are serious charges and deserve serious consideration, but also require very serious and thorough proof. This sort of case should be tried in an American court of law, not in the BMJ. At least then he would be able to make a case for his defense, and there would be some chance of the side with the best evidence winning.
  4. urbantravels

    urbantravels disjecta membra

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    The investigation consisted of both interviews with the parents and cross-checking against medical records and also the falsified case notes that Wakefield created.
  5. rwinsmom528

    rwinsmom528

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    Look how Dr Myhill was treated. Yes, today she won out, but look what they did to her!
  6. Angela Kennedy

    Angela Kennedy *****

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    But weren't the 'medical' records released to Deer without the parents consent?

    How many parents were therefore interviewed?

    How do you know Wakefield 'created falsified case notes'? What is meant by 'falsified'?
  7. Angela Kennedy

    Angela Kennedy *****

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    Very key points Willow.
  8. Angela Kennedy

    Angela Kennedy *****

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  9. WillowJ

    WillowJ Senior Member

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    I am assuming it's possible that the side accusing Wakefield could have the best evidence. If that's so, I want to know about it. But I want the side with evidence to prevail because they have the best evidence, not because they have more power and status. This is why it would be better in an American court case with cross-examinations and all that.
  10. Angela Kennedy

    Angela Kennedy *****

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    Yes- I am no 'supporter' of Andrew Wakefield as such. But I've been struck at the level of often quite rabid ad hominem against him over the years. Since becoming a veteran of the effects of bad science and rhetoric masquerading as science which you do sort of become when you enter the murky world of ME/CFS, I've learned to spot rhetorical devices or just plain fallacies much more efficiently (I believe at least), and over the years, seeing the viciousness on various forums (Bad Science, the Crippen blog, as just two of many) towards Wakefield, for example, it had occurred to me that there is very little substance to these attacks once you wade through them. On top of that, the ad hominem of parents of autistic children, parents who believe their children were damaged by MMr, those raising concerns about vaccination, has been frequent. So the alarm bells started ringing for me. When factual evidence is scarce, but authoritative assertions about people being bad in various ways appear instead, people's alarm bells should be ringing.

    The censorship of the original paper by 'retraction' is also appalling. That smacks of re-writing history and abuse of power. I would advise everyone who can to read it, because it sets in context some of the claims being made.
  11. urbantravels

    urbantravels disjecta membra

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    I don't think you could call the evidence against Wakefield "scarce" at this point. I believe the proper term for it at this point would be "overwhelming." It's in all of our best interest to see that bad science and fraud is exposed, and as widely as possible, since we are the victims of bad science, and possibly of fraud, ourselves.

    I don't see how Wakefield could be considered anybody's hero at this point. He's more like a Reeves or a Wesseley or a Steven Straus, disseminating a phony hypothesis based on bad or doctored evidence, to suit his own self-interest, that then takes on a life of its own and becomes increasingly difficult to rebut as time goes on because it becomes absorbed into the "conventional wisdom". A great deal of good science has been done to rebut Wakefield's claims, but it won't matter to the diehards, because so many people have already swallowed whole false notions about the dangers of vaccines, and will refuse to accept any evidence that contradicts this presupposition as "conspiracy" or "censorship" or whatever you wish to call it if you happen to dislike it. Confirmation bias is a very powerful mental mistake, and it's also the very thing that's holding back the progress of real, honest science on ME/CFS.

    If as WillowJ suggests, the truth of whether Wakefield was not just mistaken, but actively fraudulent, could only be settled in a court of law, I can think of a few ways in which that might happen. Some party or other could attempt a civil suit against him for the damage his fraudulent research has done; or Wakefield himself could take advantage of the UK's libel laws and sue the investigative journalist Brian Deer. In fact, if he truly has been unjustly maligned, that's exactly what he ought to do. If he fails to do so, that would be interesting.
  12. Wayne

    Wayne Senior Member

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    Paul Offit and others of his ilk often try to inject murky arguments into their positions. Look at his reference to "the anti-vaccine movement". Neither Wakefield nor others who are trying to encourage safe vaccines are "anti-vaccine". From what I can tell, they are "pro-safe-vaccines", and pro-lets do research to develop safer vaccination programs.

    From what I understand, Paul Offit, who has already made tens of millions of dollars on his MMR vaccines, stands to lose a lot (follow the money) if it were to become standard practice to begin spacing out vaccinations, which is what Wakefield advocates. Because of the importance of vaccinations, I myself have long felt we should have extensive government research to try to dramatically reduce vaccination casualties, such as those resulting from the heartbreaking Gardisil program.

    Something to keep in mind is that vaccinations is big business. As such, they will promote their products and conduct their business in much the same ways other large corporations do. Companies for years touted the safety of cigarettes; car companies and drug companies routinely resist product recalls; hundreds of thousands of people die because of these kinds of corporate decisions. But corporations don’t care; they're looking at the bottom line.

    If drug companies can keep a popular drug on the market for even a little longer before it gets banned, they stand to make billions, while only having to worry about a slap on the wrist of a few hundred million if found negligent. Unfortunately, this is just the way this modern world we live in works. Medicine and science is rife with dirty, brass-knuckle politics, something we should always keep in mind as we try to ascertain what’s true and what isn't.

    I found the interview Andrew Wakefield did with CNN quite interesting. Normally, he’s a pretty soft-spoken person, but he was pretty animated with the reporter’s questions (some of which were pretty adversarial). Makes me wonder if anybody whose career and reputation have been under attack for as long as his has eventually reaches a breaking point.

    Wayne
  13. WillowJ

    WillowJ Senior Member

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    That sounds much more credible than the article I'd seen which merely said some of the children had been "sick" prior to vaccination, according to their chart notes, and without specifying what kind of ailment or whether it was related to autism or gut issues. On the other hand, Age of Autism says that in at least one case, this pre-existing problem which was said in the investigation to be "behavioural issues" was actually a chest infection. So it gets difficult to know what to think.

    I trust you, urbantravels, but I don't trust BMJ on an inherently contentious topic. Is this something you can verify independently of the BMJ investigator?

    I haven't had the time and energy to look into it thoroughly myself, nor have I had the time and energy to thoroughly check out a proposed autism-vaccination link, so far the summary of what I know is that there's more on both sides than one study and the debunking thereof.

    But I guess really what I'm looking for in this particular case is what Rich said on page 1. Wakefield should have a chance to respond before we decide. The reason I say American court of law is that this seems to me the most fair way of making sure both sides get to show the evidence and have the evidence and motives examined.
  14. WillowJ

    WillowJ Senior Member

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    That's a really good point.
  15. Angela Kennedy

    Angela Kennedy *****

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    Urbantravels, you are aware that the people on this thread expressing concern about Wakefield's latest treatment by Deer and the BMJ are not treating Wakefield as a 'hero'?

    Secondly, censorship of the original article is what I'm complaining about also, that does not mean I'm ignoring evidence showing vaccination is safe. Your generalisations here are exemplary of the way people's concerns about ANY aspect of the Wakefield case, MMR, autism, vaccines in general, are misrepresented as crazy 'confirmation bias'. That sort of misrepresentation of people's honest complex concerns about complex issues is one of the major things holding back real honest science on ME/CFS. You need to conduct your argument without resorting to ad hominem (because misrepresentation of people's comments - like my own- on here as 'confirmation bias' is actually an example of such an argument fallacy).

    As someone who has been defamed, it's not easy to take a defamation case to course. I was prevented by money, for example. I hope - IF Deer and the BMJ are talking rubbish here - he does take them to court. It's one thing to accuse people of being wrong- but fraudulent and bogus - that is extremely serious and potentially defamatory, and the evidence presented in the BMJ is so shaky I believe it was irresponsible and unethical of Deer and the BMJ to publish at this time certainly.
  16. Angela Kennedy

    Angela Kennedy *****

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    The other thing about the 'evidence against Wakefield' is that it is 'overwhelmingly' confusing, and tainted with ad hominem and appeals to authority. Because issues are conflated, and insults against Wakefield himself, the parents of autistic children with bowel disturbances, and people conerned about vaccination safety per se are extremely abundant, therefore it's often impossible to tease out the actual issues, let alone any 'facts'. That's before the appeals to authority and other rhetorical devices.

    The BMJ might have 'jumped the shark' on this one.
  17. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I don't know enough about Wakefield and the particular facts of this situation to conclude anything. But it is only prudent to take anything published by British Medical Journal with a truckload of salt since they are the journal that's done the most to intentionally crush ME science and patients.
  18. Angela Kennedy

    Angela Kennedy *****

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    That's a very good point. They have frequently demonstrated a disregard of scientific principle in favour of polemic, especially around ME/CFS.
  19. Rosemary

    Rosemary Senior Member

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    CryShame Response to BMJ Report
    From UK's CryShame:

    PARENTS OF AUTISTIC CHILDREN SPEAK OUT AGAINST BMJ CLAIMS THAT WAKEFIELD 'S RESEARCH WAS FRAUDULENT HERE WE GO AGAIN.

    Once again, the BMJ gives a platform for Brian Deer's investigation of the research behind Dr Andrew Wakefield at el's 1998 Lancet paper. This time the BMJ editors criticise all 13 co-authors for failing to check the data, warn all medical researchers and ethics committees to check carefully before they publish, and urge scrutiny of all Wakefield published papers (presumably all 100 plus papers). The BMJ allies itself with Deer's potentially defamatory attack on Wakefield.

    As in past publications, Deer's 'expose' rehashes material gleaned from confidential medical casenotes he obtained on 12 seriously disabled children, whose parents did not consent to their release. He refuses to disclose his sources, claiming confidentiality for his informants.

    Now Deer uses revelations taken from the GMC hearing to elaborate his initial findings, which he submitted to the GMC, so starting the hearing which led to Dr Wakefield and Professor Walker-Smith being found guilty of serious professional misconduct and delicensed (subject to appeal to the High Court).

    However, nothing in the latest revelations nor in the GMC findings changes the irreversible decline thousands of parents witnessed as they saw their children fall to autism after the MMR.

    The BMJ editors' attack on Wakefield raises questions about their own ethical stance. As editors of one of the world's most respected medical scientific journals, they are duty bound to scientific ethics that demand full disclosure of research findings and protection of the identity of patients used in research. Yet the editors publish the findings of an investigative journalist who refuses to disclose the sources of the children's confidential notes and is content to publish confidential medical and legal details of disabled child patients. Continued...

    http://www.ageofautism.com/2011/01/cryshame-response-to-bmj-report.html
  20. shannah

    shannah Senior Member

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    Yes it's pretty frightening how many inaccuracies of various types are made in your own chart when you read the reports. It only adds more confusion and frustration.

    I specifically abhor the comments "patient denied further treatment" when you've asked for an alternative to the suggested medication you already have tried years before or know won't be productive. Or "patient denied further testing" when they've suggested a test that you know you're too weak to perform at the moment or won't result in any productive therapy in the end.

    It really is a complex issue. It would be helpful to hear Mikovits elaboration on her theory.

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