1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Hyperparathyroidism: An Often Overlooked Differential Diagnosis to ME/CFS
Andrew Gladman puts hyperparathyroidism under the microscope, exploring what the disease is, how it can mimic ME/CFS in presentation and how it is treated.
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Time for a Patient Revolution

Discussion in 'Phoenix Rising Articles' started by Mark, Jul 10, 2013.

  1. GcMAF Australia

    GcMAF Australia Senior Member

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    Thanks
    The Australian Federal Government has formed a committee to address Lyme disease. This resulted from conumer action.
    In the last few days consumer actions have resulted in 3 Australian bodies undertaking investigations into medical bodies using inadequate testing and other possible illegal and misleading activities.
    this is highlighted in this article
    http://www.bendigoadvertiser.com.au/story/1630359/victorian-doctor-goes-to-accc-with-lyme-disease-concerns/?cs=80
    There is also a call for a federal commission enquiry which is the highest legal enquiry in Australia.
    alex3619, merylg and Sasha like this.
  2. David Egan

    David Egan Hermes33

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    while many ME patients are working hard to improve diagnostics and treatments for ME, build ME clinics, there are some patients who criticise, belittle and insult them. Recently, one person in north ireland issued some very nasty and offensive insults against a group working for an ME clinic. And he managed to get a few others to support him in these insults, which led to a lot of trouble on the Internet. Yet for 20 years this man sat on his arse and did very little, while ME patients died and suffered and worsened over time. Shame on him for insulting and mocking other ME patients working hard to build an ME clinic, and move forward with diagnostics and treatments. Thats we are all up against, a small minority of patients who wish to attack and undermine the good work of others.
  3. Simon

    Simon

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    Not sure you always need purely representative samples, eg studying POTS ME patients would only generalise to other ME POTS patients (and maybe only those that had been tested) but could still provide valuable info. In any case, good luck with your amibitous plans.

    When I've contacted OMI before, I've just used the contact email on their website so might be worth trying.
    taniaaust1 likes this.
  4. alex3619

    alex3619 Senior Member

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    The point of OMI patient database is not to prove anything, so selection bias in what it contains should not be an issue ... unless we forget that no amount of supporting data is sufficient to prove anything. What this kind of thing does is create a basis for developing hypotheses about ME, and therefore leading to more focussed research. As a tool for hypothesis generation, and for doctors looking for case by case comparisons so they can better treat patients, it will be invaluable.
  5. Erik Johnson

    Erik Johnson Senior Member

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    What strange words.
    OMI patient database not out to prove anything? What's the point then?

    Selection bias should not be an issue? Why do it, if nothing is being selected?

    No amount of supporting evidence is sufficient to prove anything:
    What then, can ever be proven?

    It would be as "invaluable" as a rubber hammer when trying to pound a nail.
  6. alex3619

    alex3619 Senior Member

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    Hi Eric, we disagree again. No surprise there.

    OMI patient database is not a scientific study in itself, so is not about proving hypotheses.

    Selection bias is not just about selecting. Your comment makes no sense.

    No scientific hypothesis can ever be proven. This is a long established principle in the philosophy of science. This is discussed in Sir Karl Popper's work. So very much of science, and indeed nonscientific hypotheses, had so much supporting data many never doubted them. Yet they were then disproved. This includes even basic things the Newton's "law" of gravity. Things cannot be proved, only disproved. What you can do is verify facts and replicate data and show that data is consistent with an hypothesis - and even more important, you can test an hypothesis against new data collected in a way that is designed to show problems in the hypothesis. Proof primarily exists as a valid concept only in abstract mathematics. In other contexts "proof" typically means only "provide evidence for" and the hypothesis can still be wrong. For example, lots of people have been "proved" guilty of a crime in a court of law, yet were later shown to be innocent.

    If the OMI database is as useful as a rubber hammer, then please explain why it cannot be used for hypothesis generation, and why it cannot be used to assist doctors in treating patients.

    Alex.
    SOC, MeSci, Firestormm and 1 other person like this.
  7. Erik Johnson

    Erik Johnson Senior Member

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    You've managed to twist virtually every sentence completely out of recognition, including the analogy for the uselessness of a rubber hammer.

    It is your perspective that nothing can be proven that obviates the point of even trying...
    if your assertion were accurate.

    Thank goodness it is not.
    I imagine science will go on creating hypothesis and proving them, despite your doubts.
  8. knackers323

    knackers323 Senior Member

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    Hi guys how do you think we would go pleading our case and trying to get some help and/or donations to someone like Dick Smith or some other philanthropic organisation? Clive Palmer may be a good one. If he is running for politics he could just about ensure himself 100% of the PWCFS vote.
  9. alex3619

    alex3619 Senior Member

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    Its not doubt, crtical rationalism is an almost universally accepted scientific practice, and taught to almost all science students, and represents the main philosophic position in science for over half a century. Almost any book on scientific philosophy, or methodology, or practice will say the same. Science has never proved anything, it tries to create best possible explanations, which frequently get overturned as we learn more.

    There are special types of scientific research in which proof is not important though, nor is falsifiability. Some research is just out to explore in the hope of building enough data to make a more rigorous hypothesis.

    Or do you think things like Newton's law of gravity were and still are proved?

    Those vestiges of "scientific" research that do not embrace critical rationalism are responsible for things like psychogenic medicine ... as far as they are concerned they "proved" ME is psychosomatic. Nobody in modern science, from physics or chemistry to biology, would agree. Researchers who do not use critical rational methods are not scientists, and the concept of proof in science was the hallmark of nineteenth century science. Then they woke up. Large chunks of psychiatry, and smaller chunks of medical research, have yet to catch up to the twentieth century advances in scientific thinking.

    Critical rationalism does have problems though, none of which is insurmountable - pancritical rationalism resolves the issues that lie within critical rationalism, though at the expense of some precision. Critical rationalism can be considered a special case of pancritical rationalism.

    The whole idea of evidence based medicine arose because "proven" treatments were not working, or even killing people. It has its own set of problems, but it was a start. One of the issues is that it blurs medical management and practice with medical science ... they should be kept separate.

    When someone argues that a whole lot of evidence proves some scientific hypothesis, then they risk making the inductive fallacy. Even the ancient Greek philosophers knew better. Inductive inference is great for making hypotheses, and sometimes for practical situations when fast responses are required, but those scientists doing this would not claim their conclusions are proven, or shouldn't if they want to have credibility.

    There is some suggestion that statistical methods can provide proof, but this is hotly debated and not considered sound by many.
    Valentijn likes this.
  10. Erik Johnson

    Erik Johnson Senior Member

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    So you think Newtons's Law of Gravity is unreliable and can never be proven.

    The only thing that keeps you from floating off into outer space is that it is just statistically unlikely because it doesn't happen very often?
    "But this is hotly debated and not considered sound by many"... so watch out.

    You could fly away any second.
  11. Mark

    Mark Acting CEO

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  12. Erik Johnson

    Erik Johnson Senior Member

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    Some of us were under the impression that the OMI patient database was out to "prove" the reality of the disease, and develop effective treatments.

    This can only be accomplished by proper selection.
  13. Mark

    Mark Acting CEO

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    Where did you get that from? From the Open MedNet page:


    https://www.openmednet.org/registry/cfs_about


    The Open MedNet approach seems to me to be to gather a wide range of detailed longitudinal data across a broad range of conditions into one database. Such data might reveal subgroups or treatment effects through data mining. The database should contain any 'proper selection' of patients within it and such subgroups should be searchable. Assuming that's the case, I don't see why 'proper selection' would be relevant to such a project.
    MeSci and Valentijn like this.
  14. Erik Johnson

    Erik Johnson Senior Member

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    ‘Let the Patient Revolution begin‘. A militant cry from those difficult, demanding ME/CFS patients unwilling to listen to doctors and researchers who only have patients’ best interests at heart?
    ----------------------------------------------------------------------
    To have "ME/CFS" bests interests at heart, they would be properly selecting to study ME/CFS instead of a broad range of conditions.

    It is clear you don't find this relevant.
  15. Erik Johnson

    Erik Johnson Senior Member

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    When I first heard about Dr Kogelnik's datacrunching project, it was to solve ME/CFS.

    I had assumed that was still the goal, and hadn't looked to see that the mission had changed.

    I suppose datamining a broad range of de identified conditions then throws the burden of making sure they know what ME/CFS is on whoever is doing the analyzing.
  16. alex3619

    alex3619 Senior Member

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    Hi Erik, look at my avatar? Recognize him? Why is he famous? He disproved Newton's law of gravity. Its called the theory of relativity ... and its not proven either. Or do you think Einstein was wrong? Einsteins predictions about gravity were shown to be accurate (so far) and so they debunked Newton whose law could not predict the observed phenomenon involving light bending and planets.
    MeSci and Valentijn like this.
  17. alex3619

    alex3619 Senior Member

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    That is very much the case. As definitions change, or study focus changed, criteria for datamining will change. Its a resource, and its very likely that there will be a variety of medical conditions present in the patients.
  18. Simon

    Simon

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    Newton's Law was neither disproved or debunked, which is handy as most of the human-made world relies on it. A Law in science simply describes observations - usually mathematically - and no claims are made that it applies in all circumstances. And a Law explains what happens, not WHY it happens. Einstein's theory reveals a deeper truth about why gravity works, and can explain observations that Newton's Law cannot (though Newton's does a pretty good job with planetary motion, as well as most of the world we see). The two are not incompatible.
    MeSci likes this.
  19. Erik Johnson

    Erik Johnson Senior Member

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    We'll never get a ME/CFS patient revolution going by insisting that patient selection doesn't matter, and nothing can be proven.

    Those are the very words ME/CFS patients are struggling to overcome.
  20. alex3619

    alex3619 Senior Member

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    Newton's law made predictions which were shown to be wrong. Under standard conditions on Earth its accurate enough that its still used, but thats because its a close approximation. Its not correct.

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