Professor & patients' paper on the solvable biological challenge of ME/CFS: reader-friendly version
Simon McGrath provides a patient-friendly version of a peer-reviewed paper which highlights some of the most promising biomedical research on ME/CFS ...
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What constitutes reliable evidence?

Discussion in 'Other Health News and Research' started by Laelia, Apr 14, 2017.

  1. Undisclosed

    Undisclosed

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    Guidelines about what constitutes reliable evidence are not the same as the NICE guidelines. I think you can trust the information related to reliability re: anecdotal evidence versus controlled studies etc. If you look at the NICE guidelines related to CFS, you can discern that it is not based on reliable evidence (Pacing and GET). I agree with the following post. Maybe read the thread and apply some logic to your posts rather than just disagreeing without thinking through what you are saying. You asked what constitutes reliable evidence, you have been give some really good answers and I believe you have been provided a good basis for understanding. You just seem to want to twist words and argue so I am out too.

     
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  2. Laelia

    Laelia Senior Member

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    I can assure you that it is not my intention to 'twist words'. I am trying to use words in such a way that will bring greater clarity to this discussion. And I really can't understand why there should be a problem with me or anyone raising an argument or questioning things.

    If my arguments seem illogical or incoherent at times it's because I'm struggling through brain fog to be a part of this discussion. However, I really don't think it's fair to suggest that all (or even many) of my posts on here have been illogical.

    That's fine Kina. As I said to the others, if I quote you again on this thread I will do it without using the quote feature. I am doing this out of respect for your decision not to participate any further in this thread.
     
  3. Laelia

    Laelia Senior Member

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    I have gone back and read through this and the previous thread in order try and understand what the establishment view of reliable evidence is. @barbc56 very helpfully provided an image of a pyramid to describe the levels of evidence in their increasing order. However this pyramid does not explain which of the levels can provide us with reliable evidence. A number of you have said that you don't think that anecdotal evidence can ever be reliable. Can I safely assume then that this is the establishment view of anecdotal evidence? What about the other lower and middle levels of the pyramid which I don't think have been mentioned in this thread? Is it the establishment view that the none of these can provide reliable evidence either?
     
    Last edited: May 3, 2017
  4. Laelia

    Laelia Senior Member

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    Kina: "I think there is a difference between 'evidence' and 'information'. For example, there is a lot of information on Myhill's website which she backs up with a research study or two. When does the information on her website become evidence?"

    It might be helpul at this point to provide Wikipedia's definition of scientific evidence which I'm sure is accurate:

    Kina: "I think you can trust the information related to reliability re: anecdotal evidence versus controlled studies etc."

    No I don't think that you can trust this information. The PACE study is a case in point. In my opinion the PACE trial is much less reliable than anecdotes from ME patients about the efficacy of GET.

    Kina: "Maybe a better question is 'What constitutes reliable information'."

    Kina: "When members here on PR post anecdotes on how a supplement works for them, I don't ever see that as evidence of anything, I see it as providing information about the supplement."

    I'm sorry but I think Kina has got this all wrong. If anecdotes didn't provide evidence of anything then there would be no point whatsoever in exchanging them. I think there is a good reason the term 'anecdotal evidence' is frequently used. I don't recall ever hearing the term 'anecdotal information'.
     
    Last edited: May 3, 2017
  5. barbc56

    barbc56 Senior Member

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    I'm out!
     
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  6. pamojja

    pamojja Senior Member

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    I'm still in. :) Lealia, you probably interested in this perspective:

    Can only agree with the final conclusion of that article:

    Just as I already wrote. Each study has to be verified by oneself, if the conclusions are justified by the data.
     
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  7. Undisclosed

    Undisclosed

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    I wish you would learn how to quote properly. Using italics is very difficult to read for some of us. I know I said I was done with this thread but since you decided to discuss what I said, I will add my two cents or tuppence and then be done.

    Wikipedia is no where near accurate in many cases. Have you ever seen the ME/CFS page -- it's a pile of lying psychobabble and totally inaccurate. You can't always trust the Wikipedia.

    Is it not obvious to you that 'scientific evidence' either supports of refutes a scientific theory or hypothesis. Just like legal evidence is used to either support or refute legal theories etc.

    But what constitutes reliable evidence? You have been given an example of a hierarchy of evidence and good information by many.

    I think we all agree that the PACE trial is not reliable evidence due to design problems, researcher bias, poor subject selection and so on. In general, what is accepted by any serious scientist or anybody who understands the scientific process is that anecdotal evidence is the weakest form of scientific evidence. In other words, the least reliable.

    Your failure to understand this is astounding. You can talk about one study but it's not just about one study, we are talking about what constitutes reliable evidence which is accepted worldwide by scientists. Many studies get published that do not constitute reliable evidence. When one questions these studies, the truth comes out. One can question studies by asking questions about the quality and reliability of evidence presented.


    I didn't ever say that anecdotes don't provide evidence of anything
    . Perfect example of you twisting words. What I said was that anecdotal evidence in scientific research is the poorest type of evidence. Why didn't you fully quote me.

    What I said was this, maybe putting it in red might help you.

    Well, in research/science anecdotes can be seen as providing useful information. Researchers use anecdotal evidence to suggest new hypotheses but never use anecdotal evidence as validating evidence.


    As far as 'anecdotal information' -- I have heard that term used -- information coming from anecdotes.
     
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  8. Undisclosed

    Undisclosed

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    You might want to take a course to get a basic handle on all this stuff. The following is free and self-paced.

    https://www.edx.org/course/science-everyday-thinking-uqx-think101x-4

    What you'll learn
    • The scientific method and its use in everyday life
    • Tools for improving your everyday thinking
    • Tips and tricks for changing people’s minds
    • Techniques for learning and retaining information longer
    • How to distinguish fact from fiction
     
  9. Laelia

    Laelia Senior Member

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    Sorry! :( I won't use italics again!

    I wasn't suggesting that you can always trust Wikipedia! You must think I'm a complete idiot to think that this what I was suggesting! Ha! :) I was simply suggesting that Wikipedia's definition of scientific evidence was probably accurate.

    Yes it's obvious to me! But from what you were saying I thought it was not obvious to you! Perhaps that was just a misunderstanding though.

    Is it really astounding? Even taking into account the fact that I am very sick and brain fogged?

    But you definitely did imply this:

    Or maybe it was a perfect example of me misunderstanding your words? It would be really nice if people could stop accusing me of twisting words and malicious intentions. I keep trying to explain that this is not the case.
     
  10. Laelia

    Laelia Senior Member

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    Thanks for this Kina, I might take a look at it. :)
     
  11. Laelia

    Laelia Senior Member

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    I think I made the mistake of trying to participate in this discussion at a time when I am too sick and brain fogged for it. :(

    I plan to go away and do more study on this using the resources some of you have suggested. I won't come back to this thread until the brain fog clears, which I hope it might eventually (fingers crossed)...

    Thank you everyone for your contributions to the thread, you have all been very helpful. I'm sure this discussion has been helpful to other people on here too, not just me. :thumbsup:
     
    Last edited: May 5, 2017
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  12. Laelia

    Laelia Senior Member

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    I've made a start on the study which I said I was going to do. I'm not here to express any opinions on anything at the moment. I just want to share a few things from the second Science Based Medicine lecture which other people might find interesting.

    This is what one of the founders of sciencebasedmedicine.org says about complementary and alternative medicine (CAM):


    This is one of the slides from the second lecture:


    And here is another:

     
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  13. Laelia

    Laelia Senior Member

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    I think this might be the article by Dr Hall (who presents the Science Based Medicine video lectures) that Jonathan was referring to earlier in this thread:

    https://sciencebasedmedicine.org/tr...cise-therapy-how-the-pace-trial-got-it-wrong/

    However, people should also be aware that this was what Dr Hall wrote about ME/CFS as recently as 2015:

    https://sciencebasedmedicine.org/iom-recommends-replacing-cfs-with-seid/

    Discussed here: http://forums.phoenixrising.me/inde...iom-recommends-replacing-cfs-with-seid.35963/

    Dr Hall also wrote this article about the use of Rituximab in CFS:
    https://sciencebasedmedicine.org/rituximab-for-chronic-fatigue-syndrome-jumping-the-g/

    It received a lot of criticism on here: http://forums.phoenixrising.me/inde...ab-revisited-in-science-based-medicine.42499/
     
  14. barbc56

    barbc56 Senior Member

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  15. Laelia

    Laelia Senior Member

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    I hadn't left out this blog, it was the first article of Dr Hall’s that I mentioned in my previous post. But thank you for adding the thread to the discussion about this article, I hadn't found that earlier. :)
     
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  16. TreePerson

    TreePerson Senior Member

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    Don't apologise. In my opinion you've been horribly bullied. Some people on here are extremely unnecessarily rude when they disagree. Appallingly patronising and aggressive. And you have been very tolerant and polite. I'm out too for obvious reasons. ☺️
     
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  17. Laelia

    Laelia Senior Member

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    Awe thanks @TreePerson. ☺ It's understandable that tensions sometimes rise on here given how sick some people are and how long they've suffered for. However I think some people need to be more careful how they communicate on these forums. What we don't want to create is an atmosphere where people are afraid to express their opinions for fear of being belittled. This is a serious problem in my opinion.
     
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  18. Laelia

    Laelia Senior Member

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    Jonathan Edwards (earlier in this thread):

    This is not correct. I have listened very carefully to a number of Dr Hall’s lectures and she has explicitly indicated that she does see a distinction between 'conventional' and 'alternative' medicine. This is what she says towards the end of the 10th lecture:

    Don't get me wrong, I like Dr Hall and I think she is well meaning when she tries to warn patients about using alternative medicine. However I think she is very misguided in her belief that conventional medicine is always efficacious and safe.

    [Edit: I didn't say what I meant to say in my last sentence, poor choice of words! What I meant to say was that Dr Hall is misguided in her belief that conventional medicine is always as efficacious and safe as it's made out to be]
     
    Last edited: May 12, 2017
  19. barbc56

    barbc56 Senior Member

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    Dr. Hall is correct. Conventional medicine at least has some plausibility and hopefully studies to go along with it. That doesn't mean there aren't risks but the benefits usually outweigh the risks. Nothing is guaranteed to be 100% effective or safe.

    Alternative medicine, which is different, may have some theories that will turn out to be correct but until science shows this, it's still alternative and the harm may outweigh the risks. But we don't know as they haven't been scientifically studied. Some theories of alternative treatments don't even make sense as far as how the human body works.

    Dr. Edwards is saying the same thing only using different words.. Medicine is defined by the evidence behind it.

    There's a saying, "Do you know what alternative medicine that has been proven called? Medicine".

    People still have a right to choose.

    So why did you choose to quote the negative URLs, but not the one about the PACE trial which you found later? This was posted verbatim in two threads.

    There are nine pages here where members have been generous enough to take time to explain these concepts. Why don't you just agree to disagree?

    IMHO, this feels like goading others to respond for the sake of inviting discord. I have responded too hastily to many posts and that's my bad.

    In the last few days, i have decide to ignored several threads. Something I don't think Ive done before.

    It's really been quite therapeutic.:)
     
    Last edited: May 12, 2017
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  20. Laelia

    Laelia Senior Member

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    You're right @barbc56, of course nothing is guaranteed to be 100% effective or safe in medicine. I made a mistake in my previous post which I have gone back to explain in the edit at the bottom of it. What I was trying to say is is that Dr Hall is misguided in her belief that conventional medicine is always as efficacious and safe as it's made out to be. Apologies for the confusion.

    Yes, this was discussed earlier in this thread ☺

    Maybe in the interest of fairness I should have quoted something from Dr Hall’s PACE article too. So I shall do that now:

    Is that better? ☺ This was a great blog that Dr Hall wrote.

    I'm very sorry if that's the way it feels to you. It is not my intention to goad anyone to respond, I just want to be able to express my opinions and point out other people's mistakes as I hope others will point out my mistakes. I think this is how good science is supposed to work.

    I feel like I've barely even touched the surface of this subject so expect more disagreements to come, either on here or on other threads. I will try my hardest to express my disagreements in a thoughtful manner but please feel free to ignore my comments if they are causing you a lot of stress. Nothing on here is worth getting stressed out over, your health is far more important. ☺

    Peace and love to you and everyone. :tulip:
     
    Last edited: May 17, 2017
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