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Open Medicine Foundation (OMF)

Discussion in 'News from organisations' started by DokaGirl, Sep 1, 2019.

  1. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    2,819
    The fact that new articles suddenly started appearing again about Ron Davis and his family yesterday, and also Whitney’s heavy hinting that something good is coming, and Agy Lena’s post that someone posted, makes me think something really good is coming and they’ve found something new / confirmed something they hadn’t properly confirmed before. I really hope so! We need some good news! It doesn’t sound like just another hypothesis. I don’t know what it can be to be honest.. but the fact they’re dropping heavy hints makes me feel something has happened. Whitney is even talking about a cure! The OMF have never said anything about a breakthrough before so this seems different.

    I just told my boyfriend and he said to just wait and see, but that he hopes it’s good news. I guess we will know soon enough. I feel excited though.
     
    andypants, Kitty, Legend and 7 others like this.
  2. alex3619

    alex3619 Senior Member (Voting Rights)

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    The most common ME headline ever?
     
    andypants, sebaaa, MEMarge and 10 others like this.
  3. Sarah94

    Sarah94 Senior Member (Voting Rights)

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    Regarding Davis apparently saying that he thinks ME is autoimmune: remember, this was not a direct quotation. It's the journalist''s indirect reporting of what they think RD said. I wouldn't be surprised if it's a misunderstanding.
     
    andypants, sebaaa, JemPD and 7 others like this.
  4. Sarah94

    Sarah94 Senior Member (Voting Rights)

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    I think they have, sorry. I got really excited a couple of years ago about a supposedly imminent breakthrough... Did not happen.
     
    Hutan, andypants, sebaaa and 10 others like this.
  5. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    Oh :( What did they say it about last time?
     
  6. Sarah94

    Sarah94 Senior Member (Voting Rights)

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    I can't remember sorry.
     
  7. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    This represents your opinion— it was not the conclusion of the authors of the study.
     
    MEMarge, Sarah94 and leokitten like this.
  8. leokitten

    leokitten Senior Member (Voting Rights)

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    870
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    Clickbait sadly
     
    Milo, TrixieStix, Amw66 and 1 other person like this.
  9. alex3619

    alex3619 Senior Member (Voting Rights)

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    sebaaa, MEMarge, ahimsa and 3 others like this.
  10. Legend

    Legend Established Member (Voting Rights)

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    I agree with you. I'm also excited about this.

    But if this turns out to be "just" a way to spread hope and faith, or that the news is not really that big, then I will be very disappointed.
    And a bit annoyed that things are taken out of proportions.

    We should be careful with shouting out "cure, cure!" to other patients when the cure is not even close. Even if the intention is good.
    It gives false hope, and that can be destructive for some of us when we realize that the "news" only was a motivational boost.

    That said, there must be something bigger underlying these statements. I really believe so. The question for me is what.
     
    Anna H, andypants, sebaaa and 8 others like this.
  11. TrixieStix

    TrixieStix Senior Member (Voting Rights)

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    245
    Wasn't it the whole thing about how the supposedly found something 'different in the blood' and were building the nano testers, etc. Nothing ever seemed to come of that. They hyped it all up too.
     
  12. Sid

    Sid Senior Member (Voting Rights)

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    There was huge hype surrounding the “something in the blood” and nanoneedle. Before that, they hyped the Naviaux metabolic study and the OMF replication of that (still waiting for that to be published 4 years later lol). Then they hyped the metabolic trap hypothesis. Then they said it was a different kind of metabolic trap. I’m guessing the latest cure of the week is the latest marketing drive for fundraising.
     
  13. Trish

    Trish Moderator Staff Member

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    I get the impression that the current series of articles are mainly about promoting the book that has been written about Ron Davis and his efforts to try to find what is wrong with his son. All very understandable, it's normal to get as much publicity as possible when a new book is coming out.

    As to new developments, all we can do is wait and see. When I first heard about the nanoneedle a few years ago, I got the impression that development was imminent, and got quite excited. I now understand better that these things take time and money, and that work has continued on designing a bigger piece of equipment that can do many tests at the same time. I think the latest I heard was that orders had been placed for these prototypes but delayed because of covid. We still don't know whether it will turn out to be a useful test for ME. There are many stages of research, and replication by others to go through first.

    As to the rest of the developments, again, I think it's best to be patient and wait for peer reviewed publications and then replications by others, before getting too excited. New ideas and hypotheses take time to be tested, and inevitably many will turn out to be dead ends. That's the way with science that is exploring areas where so much is unknown. Davis and Phair have said themselves that the 'metabolic trap' idea is just one of many ideas to explore, and that they will need to design new techniques even to try to test it, let alone find out whether it has any relevance to ME.

    I understand the wish of people working in this field who know how little hope we have to cling to, to want to give us hope. I trust that they are doing their best and working hard, but I also have learned to be realistic that not all hopeful looking avenues will lead anywhere.

    There's a difficult balance to be struck between the desire to give hope, and the need to be realistic and not give false hope that can lead to crushing disappointment. Personally I would think it better to hold back any talk of breakthroughs until there is solid evidence to support it. And by that I mean peer reviewed publication and replication.
     
    Anna H, Hutan, andypants and 26 others like this.
  14. Andy

    Andy Committee Member

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  15. Kitty

    Kitty Senior Member (Voting Rights)

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    Very true. We have to remember that, however prominent Ron and Janet are in their respective fields, the family still struggles to afford care. Whitney hasn't been able to contribute to pensions and build savings during what should have been some of the most productive earning years of his life, in a country where people have to be very self-reliant financially. And I suspect the family have put much more of their own time and money into the direct and indirect costs of research than any of us realises. I might not be able to read much of the book, but I'll buy it as a way of trying to support them.

    It's also worth saying that if Whitney has found a medication or approach that enables him to spend a little more time with his parents and sister in the room, that is a huge development for him – it's not surprising he's been wanting to communicate it in recent months.
     
    Ariel, Anna H, andypants and 16 others like this.
  16. tmrw

    tmrw Established Member (Voting Rights)

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    Trish is right. This is 99% PR for the book. It hasn't got anything to do with research.

    Nevertheless it's great work placing it in big media outlets just before book launch. Also: Every good story about ME is a win for us.
     
    Anna H, andypants, sebaaa and 8 others like this.
  17. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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    2,199
    https://twitter.com/user/status/1346165956024926209
     
    Amw66, andypants, sebaaa and 9 others like this.
  18. tmrw

    tmrw Established Member (Voting Rights)

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    Location:
    Germany
  19. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Last edited by a moderator: Jan 5, 2021
    Amw66, sebaaa, MEMarge and 5 others like this.
  20. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

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