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  1. InfiniteRubix
    Post

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

    This, so very much this, with some more of this on top. S4ME has a raison d'etre (my head hurts too much to find keyboard accents) Many thanks...
    Post by: InfiniteRubix, Nov 27, 2019 in forum: General Advocacy Discussions
  2. InfiniteRubix
    Post

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

    I'm bailing out. I genuinely feel like I am losing a discussion that shouldn't even exist to be lost. I have been successfully distracted into...
    Post by: InfiniteRubix, Nov 27, 2019 in forum: General Advocacy Discussions
  3. InfiniteRubix
    Post

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

    Definitely not. I'm not 'upset 'with the conversation - much more than people's feelings are at stake. You're making a comparison with people who...
    Post by: InfiniteRubix, Nov 27, 2019 in forum: General Advocacy Discussions
  4. InfiniteRubix
    Post

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

    Agreed. But that's not the same as implying that there are no scientific principles, which is verging on what what many posts are implying. It's...
    Post by: InfiniteRubix, Nov 27, 2019 in forum: General Advocacy Discussions
  5. InfiniteRubix
    Post

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

    This.
    Post by: InfiniteRubix, Nov 27, 2019 in forum: General Advocacy Discussions
  6. InfiniteRubix
    Post

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

    This thread is worrying me profoundly - even more than it was. I am trying very hard to word that 'appropriately'. I'm worried enough to use...
    Post by: InfiniteRubix, Nov 27, 2019 in forum: General Advocacy Discussions
  7. InfiniteRubix
    Post

    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....
    Post by: InfiniteRubix, Nov 26, 2019 in forum: General Advocacy Discussions
  8. InfiniteRubix
    Post

    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...
    Post by: InfiniteRubix, Nov 26, 2019 in forum: General Advocacy Discussions
  9. InfiniteRubix
    Post

    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.
    Post by: InfiniteRubix, Nov 26, 2019 in forum: General Advocacy Discussions
  10. InfiniteRubix
    Post

    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...
    Post by: InfiniteRubix, Nov 26, 2019 in forum: General Advocacy Discussions
  11. InfiniteRubix
    Post

    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...
    Post by: InfiniteRubix, Nov 26, 2019 in forum: General Advocacy Discussions
  12. InfiniteRubix
    Post

    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....
    Post by: InfiniteRubix, Nov 26, 2019 in forum: General Advocacy Discussions
  13. InfiniteRubix
    Post

    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...
    Post by: InfiniteRubix, Nov 26, 2019 in forum: General Advocacy Discussions
  14. InfiniteRubix
    Post

    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...
    Post by: InfiniteRubix, Nov 26, 2019 in forum: General Advocacy Discussions
  15. InfiniteRubix
    Post

    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...
    Post by: InfiniteRubix, Nov 26, 2019 in forum: General Advocacy Discussions
  16. InfiniteRubix
    Post

    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...
    Post by: InfiniteRubix, Nov 25, 2019 in forum: General Advocacy Discussions
  17. InfiniteRubix
    Post

    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
    Post by: InfiniteRubix, Nov 25, 2019 in forum: General Advocacy Discussions
  18. InfiniteRubix
    Post

    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...
    Post by: InfiniteRubix, Nov 25, 2019 in forum: General Advocacy Discussions
  19. InfiniteRubix
    Post

    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...
    Post by: InfiniteRubix, Nov 25, 2019 in forum: General Advocacy Discussions
  20. InfiniteRubix
    Post

    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.
    Post by: InfiniteRubix, Nov 25, 2019 in forum: General Advocacy Discussions
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