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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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  1. Laelia

    What constitutes reliable evidence?

    Is this because RCTs can't provide us with reliable data about the risk of adverse pharmaceutical drug reactions? Are you sure about this? A lot of people seem to be saying that it's not possible to know if a treatment is working for you (because, for example, you might have improved anyway...
  2. Laelia

    What constitutes reliable evidence?

    Sorry pamojja, you're right, it does say that it includes the increase of risk per exposure. I guess I got confused because it also says in thst caption 'Medical injury poses greater risk to society simply because vastly more citizens are exposed to that risk and hence die'. But if you're...
  3. Laelia

    What constitutes reliable evidence?

    Absolutely. Using common sense and discernment goes without saying. I'm not just talking about supplements though, I'm talking about all the various treatment options available with alternative medicine. The table you provide is very interesting, but it doesn't tell us about the risks of...
  4. Laelia

    What constitutes reliable evidence?

    I agree with you Kina that the safety of complementary and alternative medicine exists on a continuum from benign to life threatening. Exactly the same as conventional medicine. However it would be my guess that when examined overall, the safety of complementary and alternative medicine lies on...
  5. Laelia

    What constitutes reliable evidence?

    Given that you have not replied to my questions, I would like to respond to your accusations. I'm not rejecting how science works. On the contrary, I'm a great believer in the science process. The problem is that science takes time. And this is time that many of us can't afford to wait for...
  6. Laelia

    What constitutes reliable evidence?

    You're right Kina, of course you can't conclude this, this was a mistake on my part. I did go back to add an edit to the bottom of my post to explain my mistake but perhaps you didn't see that:
  7. Laelia

    What constitutes reliable evidence?

    Please can you explain the way in which you think I am rejecting how science works? And in what way I am suggesting that non-science is just as good? Thanks ☺
  8. Laelia

    What constitutes reliable evidence?

    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...
  9. Laelia

    What constitutes reliable evidence?

    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...
  10. Laelia

    What constitutes reliable evidence?

    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...
  11. Laelia

    What constitutes reliable evidence?

    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. :)
  12. Laelia

    What constitutes reliable evidence?

    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...
  13. Laelia

    What constitutes reliable evidence?

    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...
  14. Laelia

    What constitutes reliable evidence?

    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...
  15. Laelia

    What constitutes reliable evidence?

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

    What constitutes reliable evidence?

    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...
  17. Laelia

    What constitutes reliable evidence?

    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...
  18. Laelia

    What constitutes reliable evidence?

    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...
  19. Laelia

    What constitutes reliable evidence?

    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...
  20. Laelia

    What constitutes reliable evidence?

    Hi @Kina, So are you saying that I should just accept what the scientific guidelines say are true without thinking it through and trying to understand it for myself? Maybe in that case I should also just accept that the NICE guidelines for the treatment of ME/CFS are also true? ;) Will...
  21. Laelia

    What constitutes reliable evidence?

    I think that the weak point in ME/CFS is actually the second criterion. I'm not sure whether the prognosis of ME/CFS is well established. Is anyone able to confirm whether or not this is the case?
  22. Laelia

    What constitutes reliable evidence?

    The PACE trial cost around 5 million pound sterling (and that was for a poorly run study). This study looked at the cost of 28 Phase III RCTs (all phase III randomised trials funded by the US National Institute of Neurological Disorders and Stroke before Jan 1, 2000)...
  23. Laelia

    What constitutes reliable evidence?

    Couldn't you use that as a reason to say that any research into ME/CFS is unreliable, including even the 'gold standard' double blind controlled trial? I thought we were campaigning for the use of strict criteria met by certain definitions to confirm the diagnosis until a diagnostic biomarker...
  24. Laelia

    What constitutes reliable evidence?

    I'm not disputing this of course! This is why I added the second criterion about prognosis. If the prognosis is very poor and it's it's well established that this is the case then I think we can be reasonably confident that they would not have had the same improvement without the treatment...
  25. Laelia

    What constitutes reliable evidence?

    I’m quite sure that I haven't misunderstood here and that Jonathan does consider anecdotes from patients and doctors to be unreliable evidence on their own. (Just to clarify, I'm talking here about evidence that can be used to determine treatment efficacy). Hello @Valentijn, thank you for...
  26. Laelia

    What constitutes reliable evidence?

    Fine. If I quote any of your comments in future posts I will do it without using the quote feature so that you will not be sent an alert. I am doing this out of respect for your decision not to contribute any further to this thread.
  27. Laelia

    What constitutes reliable evidence?

    Dear Jonathan, I am not trying to prove that the 'establishment' view of reliable evidence is wrong. I still don't understand what the 'establishment' view of reliable evidence is. So how can I possibly be trying to prove that it is wrong? I'm not 'playing around with words'. I am trying to...
  28. Laelia

    What constitutes reliable evidence?

    This is another statement made by Dr Hall in the first lecture when she was explaining the reasons why we come to believe that ineffective treatments work: @pamojja What would your response be if someone said the above to you?
  29. Laelia

    What constitutes reliable evidence?

    I think that is a mistake by the way (just in case I didn't make that clear!)
  30. Laelia

    What constitutes reliable evidence?

    You're right of couse! Thank you for pointing out my mistake. :)