August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
Discuss the article on the Forums.

Questions Answered by Dr. Naviaux

Discussion in 'General ME/CFS News' started by RL_sparky, Sep 13, 2017.

  1. BurnA

    BurnA Senior Member

    Messages:
    1,989
    Likes:
    8,816
    It's as rare as hens teeth apparently.
     
    denmarkk likes this.
  2. perrier

    perrier Senior Member

    Messages:
    435
    Likes:
    746
    Dear Hixxy,
    Perhaps I should have put ' dream' in italics. You get my drift, I'm sure.....

    It truly grates me daily that we go into space, invent superb robots, etc., yet we can't deal with this, and save the young people.
     
    Zombie_Lurker, justy, Hilary and 5 others like this.
  3. melihtas

    melihtas Senior Member

    Messages:
    102
    Likes:
    301
    Istanbul Turkey
    I wouldn't trust any information online about any drug's availability, especially in Africa. I contacted to many pharmacies and doctors in Kenya too and they said it is not available from any of their distributors.
     
  4. Wonko

    Wonko Senior Member

    Messages:
    1,057
    Likes:
    2,273
    England
    TiredSam and BurnA like this.
  5. hixxy

    hixxy Senior Member

    Messages:
    1,102
    Likes:
    1,255
    Australia
    With this company setting up to produce the drug and fund trials I wonder if they will be awarded a patent for a low dose formulation of this drug intended specifically for treating ME and autism? I can just imagine what the pricing will be if this is the case.
     
    Murph likes this.
  6. BurnA

    BurnA Senior Member

    Messages:
    1,989
    Likes:
    8,816
    On the plus side if they can convince a company to sponsor the trial it would be a very significant investment.

    Profit is the big motivator for any serious investment, the sooner we can attract biopharma to ME the sooner we will all get better.

    I did wonder how a company might make money from a drug that's off patent.
    I am not sure how they can, unless a dose is patentable.
     
    MEMum, perrier and Wonko like this.
  7. Wonko

    Wonko Senior Member

    Messages:
    1,057
    Likes:
    2,273
    England
    Customer service is one way, only give the drug to their own distributors/doctors and only they can inject it, £10k per shot delivered with a doctor to administer it anywhere in the world, or whatever figures gives a reasonably absurd profit.
     
  8. BurnA

    BurnA Senior Member

    Messages:
    1,989
    Likes:
    8,816
    But if it works and if there is money to be made, anyone can make it?
     
  9. Wonko

    Wonko Senior Member

    Messages:
    1,057
    Likes:
    2,273
    England
    Might not be worth it tho if they don't have a plant set up to do so, presumably doing so would displace something they are already making money from. But yes, it's a risk.
     
    BurnA likes this.
  10. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,172
    Likes:
    2,689
    Profit / patent are good if they motivate a company to produce the drug and fund trials
     
    MEMum and Murph like this.
  11. perrier

    perrier Senior Member

    Messages:
    435
    Likes:
    746
    It might be a motivator: autism, CFS, ptsd, etc etc.
    The thing is: I'm not sure how Dr Naviaux is certain it will work. I'm not able to figure out the science he is using to come up with this.
     
  12. Kati

    Kati Patient in training

    Messages:
    5,424
    Likes:
    19,311
    Good clinical trials take time and money. There are many hurdles to go through including forming a team, going through ethics review, safety review, FDA approval building the protocol, establishing dosage, reporting adverse events and on, and on and on. A drug has to go through many phases to be approved as a treatment and there are very good reasons for that, mainly for the safety of patients and to accurately determine efficacy of the drug.

    N=1 very seldom brings information that can be useful to a patient population other than having patients rushing to buy supplement or a drug out of India/Africa, and risking their health or their money in the process. If you like the researcher's work, support him through a gift of money, or by fundraising.
     
    Last edited: Sep 13, 2017
    justy, Hilary, TrixieStix and 5 others like this.
  13. Neunistiva

    Neunistiva Senior Member

    Messages:
    228
    Likes:
    1,265
    He's not. Thus the years of work and three trials he's planning to do.
     
  14. duncan

    duncan Senior Member

    Messages:
    1,933
    Likes:
    4,191
    Like most, I am hopeful of Naviaux's work.

    Here's a potential problem, at least in my eyes: He cannot prove it's not an active infection at play in a significant portion of ME/CFS patients, regardless of whether it's IOM or CCC or ICC criteria, or much lesser diagnostic iterations.
     
  15. Murph

    Murph :)

    Messages:
    387
    Likes:
    2,085
    At a broad level the idea is ATP is a signalling molecule that brings on cell danger response (among other roles!). This drug inhibits ATP leaking from cells.(please correct me if i've got this wrong) I think there is a theoretical basis for it maybe working. Whether it works in actual reality is a very hard question to answer!
     
  16. JES

    JES Senior Member

    Messages:
    415
    Likes:
    656
    I used to think of CFS as an active infection, becaues it's how I feel, as if I had some active infection. But I'm less certain after the recent developments, including the success of Rituximab in phase 2 trial. The Rituximab phase 2 results, assuming that they carry over to phase 3, contradict at least in a certain sense the active infection theroy. If there was an active infection, and assuming that it was tied to B cells, then Rituximab should have resulted in rapid improvements. But instead what happened was that patients started seeing the improvements several months later, even up to half a year.
     
    MEMum likes this.
  17. duncan

    duncan Senior Member

    Messages:
    1,933
    Likes:
    4,191
    Eh.
     
  18. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,172
    Likes:
    2,689
    @melihtas

    Do you know if the suramin research chemical is identical to what is used pharmacologically?
     
  19. RL_sparky

    RL_sparky Senior Member

    Messages:
    298
    Likes:
    1,535
    California
    Update: Here is the revised copy. I'm fried from today so I'm just posting the link and maybe someone else will post it here. I want to add that it was brought to my attention that Dr. Naviaux's lab is running low on money. He wants it known that he needs financial support for his lab as it WILL SHUTTER if it does not receive funding.

    Please consider donating to Dr. Naviaux's research:

    http://naviauxlab.ucsd.edu/support/


    Revised link: The link had a problem. I will figure it out another time and repost.
     
    Last edited: Sep 13, 2017
    justy and Jennifer J like this.
  20. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,172
    Likes:
    2,689
    How much money does he need to keep it open? Perhaps a crowdfunding campaign could be arranged
     
    Jennifer J and Neunistiva like this.

See more popular forum discussions.

Share This Page