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Dr Ron Davis - Updates on ME/CFS research - September 2019 onwards

Discussion in 'ME/CFS research news' started by John Mac, Sep 26, 2019.

  1. Mij

    Mij Senior Member (Voting Rights)

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    6,022
    They will not find a cure for ME, this needs to be deleted from their vocabulary. Many illness have not been 'cured'.

    At this point we need existing drugs to improve our quality of life.
     
  2. Perrier

    Perrier Senior Member (Voting Rights)

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    755
    Just a friendly correction here from Dr. Janet Dafoe: Mrs. Tannenbaum does not makes these decisions. And the funding for this project came from elsewhere. I was unable to get more information because of an emergency interruption. Thanks.
     
    EzzieD, Amw66, MeSci and 9 others like this.
  3. dreampop

    dreampop Senior Member (Voting Rights)

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    407
    A few years ago, OMF got a $1M donation specifically to be set aside for the metabolic trap so it may be in reference to that.

    It seems they are unable to design an experiment to test this hypothesis in patients cells and thus are stuck going an awfully long way around to figure out how to prove or disprove this. They must think it's quicker to test drugs on it and then try those drugs out than to demonstrate the trap in patients.
     
    cfsandmore and alktipping like this.
  4. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    Sarah94, sebaaa, TigerLilea and 6 others like this.
  5. Mij

    Mij Senior Member (Voting Rights)

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    My point was that they've been applying the word 'cure' to their narrative for the last 6 years. It's quite arrogant.

    Hope is justified “realistic" when the patient knows and accepts experts’ judgement about the probability of hope fulfillment.

    Personally, I'm more in favour of bringing realistic hope that they're moving forward with possible drugs that could improve a patients life. Making things appear bigger than they are is false hope (ignorance). jmo.
     
    Sarah94, sebaaa, cfsandmore and 8 others like this.
  6. Marky

    Marky Senior Member (Voting Rights)

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    Location:
    Norway
    Ufortunately I have lost trust in OMF. I hear more talk than i read research, and ultimately that is all I can judge them on
     
    sebaaa, cfsandmore, Aroa and 8 others like this.
  7. Braganca

    Braganca Senior Member (Voting Rights)

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    135
    I still have faith in them, and especially in the metabolic trap theory. And I think in recent months they’ve dialed back the communications. I don’t think it helps that a year ago Whitney was alluding to great things happening and that gets peoples hopes up, but perhaps he just also gets his hopes up.

    <edit to delete an inaccurate comment>
     
    Last edited: Dec 22, 2021
    Tia and Jaybee00 like this.
  8. Trish

    Trish Moderator Staff Member

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    Location:
    UK
    I don't think Ron is the sole decision maker at OMF. It has a scientific advisory board who would discuss what to fund.
    https://www.omf.ngo/
     
  9. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    1,098
    It takes a long time to do research, unfortunately. Remember it took about 15 years for Fluge/Mella to falsify the hypothesis that rituximab can be used to treat ME/CFS. So more than a decade to investigate one potential treatment, and it was a dud.

    Patience is something that is needed, but few of us have.......
     
    Last edited: Nov 26, 2021
    alex3619, Marky, EzzieD and 7 others like this.
  10. Sean

    Sean Senior Member (Voting Rights)

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    4,662
    Location:
    Australia
    After nearly 4 decades – my adult life – of waiting for medicine to get its act together and having to watch my life waste away in the meantime, I think I can claim to be both very patient, and rapidly running out of the little patience and forbearance I have left, especially after the behaviour from the BPS mob on the NICE guidelines. :grumpy:
     
    sebaaa, TigerLilea, brf and 31 others like this.
  11. Marky

    Marky Senior Member (Voting Rights)

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    Location:
    Norway
    I know, but they didnt use 15 years to start a phase 1 study.
    Hopefully something good will come out of all the funding to OMF, I`m just saying im starting to get skeptical.
     
  12. 5vforest

    5vforest Senior Member (Voting Rights)

    Messages:
    200
    Location:
    San Francisco, CA
    More transparency would go a long way.

    I really do appreciate Ron's video updates, it is clear that he is trying to keep us in the loop. It seems like a lot falls on him personally.
     
    Ariel, sebaaa, cfsandmore and 3 others like this.
  13. jamari

    jamari Established Member (Voting Rights)

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    Location:
    United Kingdon
    Something that's been on my mind is how a trapped cell would be passed down during mitosis? Would the daughter cells inherit this problem?

    As we all know.. cells die and new ones are made.

    But.. me/cfs does not improve with time. Is anyone here techie enough to explain why the metabolic trap hypothesis would be chronic?
     
  14. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    1,098
    SNT Gatchaman likes this.
  15. jamari

    jamari Established Member (Voting Rights)

    Messages:
    50
    Location:
    United Kingdon
  16. Mij

    Mij Senior Member (Voting Rights)

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    Last edited by a moderator: Jun 9, 2022
    Lilas, Sean, Jaybee00 and 4 others like this.
  17. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    Comments from Laurel Crosby


    Hi everyone. My name is Dr. Laurel Crosby and I’m the co-investigator on this project. We sampled hair many years ago because patients were concerned about heavy metals exposure. But we found that certain trace metals appeared to be low. We don’t know if this is really a deficiency or if it’s an artifact. (That is, maybe people with ME/CFS don’t go outside as frequently or wash their hair as often as healthy counterparts. The minerals could be low in hair because the environmental exposure is lower.)

    When we started to explore this question further, we realized that manganese is an important trace metal for enzymes involved in metabolism. So, we’re actually focused on aspects of metabolism and how people with ME/CFS metabolize various sugars and amino acids. If there is a clear pattern that manganese enzymes are affected, then we can speculate about why this happens. Maybe manganese content is fine in the blood, but it’s not getting into cells or into the mitochondria. These are interesting questions that we’ll pursue in our 3 year study.

    Here is what you should know now: Dietary manganese comes from carbohydrate-based foods like cereal grains. There has never been a documented case of manganese deficiency because of low dietary intake. (But that was before keto diets were popular!) Calcium supplements can also bind up manganese in the gut and prevent absorption. So, there are potential ways that someone *could be* deficient, and we’ll be looking at this from many different angles.

    The problem with supplementing with a trace metal like manganese is that too much can be toxic. The safest strategy is to get nutrients from whole foods. Please help us keep the ME/CFS community safe by recommending foods over supplements.

    Thank you,
    -Laurel
     
    Louie41, Sarah94, JemPD and 16 others like this.
  18. strategist

    strategist Senior Member (Voting Rights)

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    4,484
    I took part in this study and had low manganese.
     
    Louie41, Binkie4, Dolphin and 8 others like this.
  19. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    1,098
    Hopefully not using this shampoo?

     
    Louie41 likes this.
  20. Jaybee00

    Jaybee00 Senior Member (Voting Rights)

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    Louie41, Dolphin and cfsandmore like this.

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