Search results

  1. InfiniteRubix

    A proposal for ME Action: a commitment to evidence-based medicine

    Varying levels of reliability exist, agreed. But that is an outcome of research. Variability is a finding, or axiomatic observation at a minimum. But it's not the process. I totally agree that pyramid might not be the best list of stages to use for a process - I defer to others about which...
  2. InfiniteRubix

    A proposal for ME Action: a commitment to evidence-based medicine

    Put otherwise, which pyramid is the second order question. Too many posts seemed to dispute there was any pyramid at all. That is the entirety of my worry.
  3. InfiniteRubix

    A proposal for ME Action: a commitment to evidence-based medicine

    The most useful pyramid needs defining. Maybe with less detail for this purpose. But the principle is remains.
  4. InfiniteRubix

    A proposal for ME Action: a commitment to evidence-based medicine

    I'd also ask @Jonathan Edwards or anyone else who should be tagged from the community (please tag!) to ensure that this position is expressing a fundamentally boring and banal point without holes. If it has holes, they need filling. But the banal shouldn't be as disputable as it has been.
  5. InfiniteRubix

    A proposal for ME Action: a commitment to evidence-based medicine

    Does anyone still have any discomfort with this? Is this issue still in the air? It goes to the heart of CCI and MEpedia conversations, S4ME credibility and @Michiel Tack 's letter. If we don't all agree, it needs urgent clarification IMO.
  6. InfiniteRubix

    A proposal for ME Action: a commitment to evidence-based medicine

    Exactly! :) Whatever the version or choice of terms /granularity, it is the spirit of this hierarchy that is being placed into doubt so often. That is why I have become so worried about what has been happening. I agree that LDN, CCI or most things are not going to be high up that pyramid. I am...
  7. InfiniteRubix

    A proposal for ME Action: a commitment to evidence-based medicine

    "Status" is an example of double meanings through pwME glasses, worrying that status should not equal eminence - a reasonable concern. This is why my point is so critical. The meanings of words or concepts are not always the same to 1) a new ME researcher or a third party vs 2) loaded meanings...
  8. InfiniteRubix

    A proposal for ME Action: a commitment to evidence-based medicine

    Fair enough, regarding use of that word, but the point that I keep coming back to is different (that word alone can blur my point, so I added synonyms and proxies for scientific status to that post's point 1). Sure, the idea of status needs to be properly defined with criteria and I gave a few...
  9. InfiniteRubix

    A proposal for ME Action: a commitment to evidence-based medicine

    Apologies for sending out garbage into your mailboxes via previous posts. I just learnt that secondary edits won't hit mailboxes and you instantly received the first cut of nonsensical typos and autotext or voice recognition messes. Hadn't occurred to me. Rationalising and editing text is my...
  10. InfiniteRubix

    A proposal for ME Action: a commitment to evidence-based medicine

    Cautionary tangential observation... I literally have been eating crisps for that reason - a vice with a purpose if I want a treat... And now my cholesterol has raised... Absurd, I know. But a cautionary tale of the nonsense we subject ourselves to. This
  11. InfiniteRubix

    A proposal for ME Action: a commitment to evidence-based medicine

    As someone who just ranted in my own long post, I couldn't agree more
  12. InfiniteRubix

    A proposal for ME Action: a commitment to evidence-based medicine

    This is on the money. Being especially unfortunate, relative to many illnesses, mustn't make us subjective to the point of being blind or narcissistic. We must remain objective.
  13. InfiniteRubix

    A proposal for ME Action: a commitment to evidence-based medicine

    @Michiel Tack 's letter dealt with this all in different ways. My live worry is that, even with that letter, we are left here on S4ME with point 1 above put in question. The idea that a finding/treatment has a status as consensus/good bet/mere idea is determinable, important and not to be...
  14. InfiniteRubix

    A proposal for ME Action: a commitment to evidence-based medicine

    I maybe pasted into the wrong thread. But the MEpedia, the 1st Dec thread and this are all the same topic at root, at least in large part, IMHO.
  15. InfiniteRubix

    A proposal for ME Action: a commitment to evidence-based medicine

    Can I offer a suggestion to short circuit this? Otherwise, I think this ethical and philosophical mishmash for pwME has at least another 10 years left in it , leaving unnecessary space for confusion, misinterpretation, bias and very bad behaviour IMHO (especially as matters shoot off into the...
  16. InfiniteRubix

    Biomedical articles on MEpedia - purposes and pitfalls

    Disclaimers have a role, but the context is a medical landscape unusually dominated by varying degrees of speculative treatments and desperate patients with no options. so I don't think a disclaimer is enough, it needs some kind of per topic tagging of relative scientific status.
  17. InfiniteRubix

    Biomedical articles on MEpedia - purposes and pitfalls

    I am going to reference my other posts here. At the end of the day, it appears that MEPedia is at the heart of the recent scientific rigour/ME Action discussions, in practice and as things stand. It is very easy to add a flag for wiki articles, with only specific drop down options available to...
  18. InfiniteRubix

    A proposal for ME Action: a commitment to evidence-based medicine

    Those are are questions that are answered by best practice research governance and project management, from which useful categories of status could be defined. It doesn't matter if some categories are totally empty, which could be the case for nearly everything for us because of research...
  19. InfiniteRubix

    Biomedical articles on MEpedia - purposes and pitfalls

    I totally agree that there are degrees of moderation and moderation quality, and ideally the wiki should evolve to continually improving moderation, with experts involved. It has to, for validity. Just playing devil's advocate now: there will always be a challenge for moderating disinformation...
  20. InfiniteRubix

    A proposal for ME Action: a commitment to evidence-based medicine

    Exactly, and what that then opens up is expansion on what we've both said, which is how does one determine what the status is of a scientific issue? Because obviously can't be democracy, particularly for democracy's sake. It's just a case of taking classic principles of scientific governance...
Back
Top Bottom