Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Treatment options Ron Davis

Discussion in 'General Treatment' started by neweimear, Jun 17, 2017.

  1. neweimear

    neweimear

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    Hi all
    Can anyone take an educated guess as to how soon Ron Davis will find treatments for us, he will be testing drugs on his assay. If he finds some suitable, what can happen then to fast track the process? Basically what is the minimum amount of time we are looking at? Im sure there are so many drugs out there that could be benefiting us, its just a matter of finding them, thanks
     
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  2. msf

    msf Senior Member

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    Hasn´t he (or someone) already mentioned suramin? I don´t know whether that is as a potential treatment though.
     
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  3. Demepivo

    Demepivo Dolores Abernathy

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    Robert Naviaux has been in talks with the OMF about funding a potential Suramin trial on 10 female patients.
     
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  4. BurnA

    BurnA Senior Member

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    Minimum would be 3-4 years would be my guess.
    Best case is a drug the is already approved for another indication turns out to be beneficial. That way less safety trial work is required.

    So let's say a drug shows up as a potential in vitro.
    Then it needs to be tested in humans, probably just a very small trial.
    Then if that shows promise, further work would be required to look at dose, side effects etc. and then one or several large scale trials, followed by a review and approval process.

    Suramin is a potential and the OMF are looking to do a small trial in humans.
    Note that Suramin is not FDA approved.
     
  5. AdamS

    AdamS Senior Member

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    I think the results of the phase III Rituximab trial are due sometime in 2018, which isn't too far away. This could help a subset.

    Ampligen has also proved to be effective for some too, though availability seems to be a problem.

    I think there is still an incredible amount of work that needs to be done, ME is a super complex, underfunded illness so i'd agree with @BurnA my guess is 3-5 years, but I hope i'm wrong.
     
  6. caledonia

    caledonia

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    He said he was going to be testing every FDA approved drug. So if something is helpful among those drugs, why couldn't you start prescribing those off-label right away? That's already being done for various drugs.

    If it's a non-FDA approved drug (like Ampligen) or something that needs to be developed from scratch, that's a different story.
     
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  7. junkcrap50

    junkcrap50 Senior Member

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    Your doctor could prescribe them right away. Ideally, he/she should know how to manage that drug and/or have experience in using it. However, insurance may not pay for the drug off label for CFS if its expensive or used uncommonly or exclusively for something else. The doctor would have to diagnose you with approved conditions for insurance to pay for the drug.

    There may be some need to experiment with doses and methods of taking the drug for CFS however, which may take time.
     
    Last edited: Jun 17, 2017
  8. Learner1

    Learner1 Professional Patient

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    Its also possible to appeal. There are experimental treatments for cancer all the time.
     
  9. BurnA

    BurnA Senior Member

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    Remember he is testing them in vitro an an as yet invalidated test.

    Even if the test is validated, the results of any drug testing would need to be proven in humans before anyone is likely to prescribe them.
     
  10. neweimear

    neweimear

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    I suppose the closest potential treatments we have at present are rituximab and cyclophosphamide. I wonder if cyclo can bring about long term remissions, it seems it can in other autoimmune disease but maintenance doses of less toxic immunosuppressive drugs are used to maintain the remission, whatever they might be. Are u all tired of waiting!!! We so deserve some treatment soon
     
  11. Alvin2

    Alvin2 Senior Member

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    I've wondered about this a fair deal and here are my thoughts
    There is no way to tell, we don't know what he is working on day to day, and it would be counter productive to demand this. Lately they have been working on their grant applications, meaning no direct progress recently but longer term if they get it its very worth their time. Is it, only time will tell. They could be on the brink today, which means it was a waste of time (since it will take time to get the money if its even approved), it may take a few years to make significant progress which makes this time spent an extremely smart decision.
    They appear to be scanning everything they can simultaneously which is great and any one of them could lead to a surprise profound discovery soon, but it may not, it may take a while. Only time will tell because the condition is obviously caused by something but how hard is that something to find, we won't know until its found.
    His cell stress discovery may be a core piece of ME/CFS, a downstream effect or only peripherally related. Until its identity and cause is found and pathway identified we won't know. Also his drug assay would likely be symptom control if it works, if it alters, degrades or denatures the molecule causing the block it won't be affecting the block's source since that source is not included in the test. Thats great if something controls the symptoms but its not a cure. Of course that would probably be good enough for us if it gets us functioning again and is hopefully low risk and low side effect. We would also have to be ready for compensatory effects.
    A cure is more difficult, it all depends on the cause. A treatment for the actual disease mechanism will be more work, it could be found by accident (a la Rituximab) or knowing how the disease works could lead to targeted treatments. If for example its caused by intestinal bacteria then developing a treatment to eliminate it would be the cure. If its auto immune its probably gonna be much more difficult. If its an on/off switch it could go both ways if there exists a drug to reset it. If it is genetic, environmental or some other cause its impossible to say how it could be treated till we know what it is and can get to work on attacking it directly.
     
  12. junkcrap50

    junkcrap50 Senior Member

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    What if someone (doctor/lab/manufacturer) made a homeopathic solution of suramin?

    This way you could get around the issue of availiabity, needed prescription, and drug risks of suramin. I still don't know if I believe in homeopathy or not, but I'd buy it just to try it and see if it works or helps.
     
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  13. melihtas

    melihtas

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    Istanbul Turkey
    I am seriously thinking about trying to synthesize Suramin at home. It was first synthesized in early 20th century without any electronic lab equipment, so it shouldn't be that hard. The problem is I don't have any practical chemistry knowledge and I need to do a lot of reading first.

    At the moment the only recipe I found is not very detailed. You can find the pdf file as attachment to the post.

    I also found some detailed sources about it but they are only accessible to students of universities in Missouri. If you know someone there that would be great.

    Design of a solid-phase synthetic strategy for the synthesis of suramin and its analogs

    Medicinal chemistry of suramin : synthesis and a preliminary mechanistic investigation
     

    Attached Files:

    Last edited: Jun 19, 2017
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  14. Tally

    Tally Senior Member

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    I already have that at home. Comes right out of my kitchen tap.
     
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  15. keenly

    keenly Senior Member

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    Do not get your hopes up.
     
  16. junkcrap50

    junkcrap50 Senior Member

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    If you're serious about synthesizing it and experimenting with the drug, something easier than trying to synthesize it would be to try to buy it off the black market on the dark/deep web. (There are many articles about how to get there.) It's unlikely to be a commonly sold drug there, but come on, it's the black market. Someone could get a hold of it, especially if they're in another country that uses it commonly.

    Disclaimer: Experimenting with drugs is dangerous. Dark web is illegal. Try at your own risk. Etc. Etc. Etc.
     
  17. junkcrap50

    junkcrap50 Senior Member

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    Fair enough. But there are a significant amount of people on here, as well as other ME/CFS/Lyme/Chronic Illness, that believe in and use homeopathy. So my comment was for them, not people like you.
     
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  18. melihtas

    melihtas

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    Istanbul Turkey
    Do you seriously think that buying some white powder from dark web and putting it into your body is a better idea? How would you know that they send the real drug instead of corn starch?
     
    Last edited: Jun 18, 2017
  19. DoggerFisher

    DoggerFisher

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    @junkcrap50 A homeopathic pharmacy * would make it up for you but to be curative a homeopathic remedy in its undiluted state needs to cause the symptoms you want it to cure so it probably won't be helpful. *please no abuse. If you don't like homeopathy, look away now.
     
  20. Tally

    Tally Senior Member

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    Truth and reality don't depend on what type of person you are. They are same for everyone no matter what you believe in.

    Homeopathy is based on wrong premise of how people get sick and in the end it is packaged water.

    I don't expect everyone to know everything, there are plenty of things on this forum that are way over my head, but there is no excuse for adults to fall for this trickery in 2017 when you can learn all you need to know from several introductory sentences on wikipedia.

    Promoting homeopathy is unethical, the same way promoting witchcraft for treatment would be.

    Suramin is not orally bioavailable so it needs to be injected intavenously under supervision of a medical doctor.
     

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