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[BBC] GcMAF: Unlicensed HIV drug 'nearly killed patient' (Noakes pleads guilty)

Discussion in 'General ME/CFS news' started by Milo, Nov 23, 2018.

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  1. Milo

    Milo Senior Member (Voting Rights)

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    GcMAF: Unlicensed HIV drug 'nearly killed patient'

    https://www.bbc.com/news/world-europe-guernsey-46308221

    Up to 75% of patients who reported taking an unlicensed drug marketed as a cure for autism, HIV and cancer, suffered side effects, a court heard.

    One of 17 customers wrote she "almost died numerous times" in feedback read at Southwark Crown Court.

    The patients were taking an unlicensed blood product sold by Guernsey-based Immuno Biotech.

    Founder David Noakes, of Kent, admitted selling the drug, but maintained "99%" of customers suffered no side effects.

    Noakes, 65, of Waldershare, Dover, pleaded guilty to charges of manufacturing, supplying and selling the unlicensed medicine and money laundering. He is expected to be sentenced next week

    (More at link above)


     
    Last edited by a moderator: Nov 23, 2018
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  2. Milo

    Milo Senior Member (Voting Rights)

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    Nothing to say?

    This Gc-Maf has been the subject of hundreds of pages in other forums. Patients claim it helped themDid they know it was an unlicensed substance?

    I wonder whether Dr E and Dr D still recommends it these days?

    The charges are very serious and Noakes might well have to serve jail time.
     
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  3. Alvin

    Alvin Senior Member (Voting Rights)

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    We seem to forget why we have regulations in place, people hate red tape but it was instituted because snake oil was crowding out actual treatments and people would just lie about effectiveness and use unscientific anecdotal evidence to get people to harm themselves with harmful or ineffective treatments instead of legitimate treatment.
    This is why we need scientific testing and laws to prevent sale of poisons or placebos as actual treatments.

    I am reminded of the oil price spike of 2008 (an odd relationship of course) where people were desperate or better gas mileage and there was a proliferation of scam devices that promised better mileage from hydrogen generators to additives to lots of garbage. They sold well using lies and anecdotal evidence to a population that was desperate for easy answers. People fall for nonsense with alarming regularity :emoji_face_palm:

    I hope so. Something i posted on the other forum in regards to another treatment if it were so great then a scientific trial would be welcomed and pursued because a miracle treatment would make its owner millions if not billions of dollars. Depending on anecdotal and unscientific evidence is a feature not a flaw because its snake oil. Legitimacy would bring huge profit if its real and that is their goal so if they refuse to pursue it its because its a fraud.
     
    Last edited: Nov 23, 2018
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  4. Diluted-biscuit

    Diluted-biscuit Senior Member (Voting Rights)

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    I remember seeing one doctor encouraging patients to make their own GcMAF to treat ME/CFS a few years ago, really worrying.
     
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  5. erin

    erin Senior Member (Voting Rights)

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    Many licensed medicine kills people but it's OK I guess. License to kill; chemotherapy killed and kills millions but we accept it OK.
     
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  6. Alvin

    Alvin Senior Member (Voting Rights)

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    There is a difference, your taking a known and tested risk. You are deciding if chemo is worth the known risk vs a cancer that is a known risk. Several medications are approved because they are less risky then the disease and/or they are the best treatment available. And people often do decide not to use chemotherapy or other cancer treatments, the cancer is too advanced, its a slow acting cancer that they can watch and wait or the side effects vs how much extra time they would get is not worth it and other reasons as well
    When your taking snake oil your taking an untested and unknown risk. Your also risking adulterants in an unregulated product, if it contains arsenic or cyanide or melamine or something else you could be harmed by not just an ineffective or harmful active ingredient but other poisons in the product.

    I sometimes think we have had a decent living standard/products for so long we have forgotten what the past was like and why regulations were implemented. Undoing progress seems to be a popular trend these days :emoji_face_palm:
     
  7. Diluted-biscuit

    Diluted-biscuit Senior Member (Voting Rights)

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    It’s completely different, doctors understand the risks vs rewards with licensed medicine.

    Chemotherapy has saved millions and cancer will almost certainly kill you without treatment of some kind, all of which have risks but are the best we have for now.
     
  8. hinterland

    hinterland Senior Member (Voting Rights)

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    Isn’t this human blood product derived version a whole different prospect to the home-made yogurts some people were attempting? I don’t know much, but think it involved certain probiotic strains acting on colostrum in a base of milk, and you ended up with a sort of kefir or yogurt cultured milk drink containing gcmaf.
     
  9. Diluted-biscuit

    Diluted-biscuit Senior Member (Voting Rights)

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    Ah that would make sense
     
  10. Kafka

    Kafka Established Member (Voting Rights)

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    I am taking the probiotic MAF and it has put me into remission - I don't believe it's snake oil - however, it probably only helps a subset of patients and I am in remission because of a combination of treatments, but the MAF is definitely a necessary part, as I have tested all of them.

    I found the MAF after the FDA stopped allowing the production or importing of GcMaf - so don't know the particulars of what happened. I was told at the time that there were two sources for GcMaf - one of which was below par, but that the other source was good quality. And the FDA over reacted to the bad one by banning all.

    I also had 'side effects' before I went into remission - 3 months of extra fatigue... so I was worse before I was better. I don't think that should count as an adverse effect though, but maybe it does.

    Dr E has patients who are doing very well on the MAF, like me, but of course it's a subset...
     
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  11. Alvin

    Alvin Senior Member (Voting Rights)

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    Is that the new rationalization?
     
  12. Kafka

    Kafka Established Member (Voting Rights)

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    Sorry @Alvin I'm not sure what you're asking... can you expand?
     
  13. MeSci

    MeSci Senior Member (Voting Rights)

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    They do not. Not in the UK anyway, and I believe the stats re deaths from medicines are pretty similar around the world.
     
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  14. Alvin

    Alvin Senior Member (Voting Rights)

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    Saying its a subset being a way to explain the lack of proven efficacy and anecdotal reports.

    I am under no illusion that we know everything there is to know about supplements or medications but if something works it can be properly tested. Reasons to rely on anecdotal evidence are typically excuses.
     
  15. Diluted-biscuit

    Diluted-biscuit Senior Member (Voting Rights)

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    I disagree. No system is perfect but there’s a big difference between licensed and unlicensed drugs.
     
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  16. Kafka

    Kafka Established Member (Voting Rights)

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    Yes, I agree with you. If only we had the resources to test everything... I was sticking up for the MAF because it worked for me - though of course I know it won't for others (it didn't for my daughter). If the probiotic form was banned - I would lose my 'life' so maybe I'm over reacting - but just wanted to add my perspective.

    It's a very difficult path to choose which medications and treatments to try, as most haven't been properly tested for ME. The first 15 yrs of my illness I refrained from any prescription meds and finally only tried diet change and supplements (though supplements can harm too, I am aware).

    My daughter is more severe, and she is trying several FDA approved (for other illnesses) medications, none of which have helped.

    I think we're all still in the dark until more research is done. And definitely easily prey to quacks, so I hear your concern!
     
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  17. MeSci

    MeSci Senior Member (Voting Rights)

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    Not as big as you might think.

    I spent a lot of time studying drugs (at Masters level) and also separately, and got paid for some work on them. Tests can be very unreliable.

    Drugs are regularly found to be ineffective after being used for years, and things are found effective by some tests and ineffective by others.

    Whilst my brain has suffered in the last two and a half years due to this illness, I am still well aware of the frequent (almost weekly) messages I get from New England Journal of Medicine and Physician's First Watch, and both of these give lots of details of uncertainties and abandonments of medicines.

    Sorry - I meant almost daily messages.
     
    Last edited: Nov 24, 2018
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  18. Diluted-biscuit

    Diluted-biscuit Senior Member (Voting Rights)

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    I’m not well enough today to go into detail but I’m under no illusions of medicines being perfect, just that it’s the least bad option. I will just respectfully say I disagree.
     
  19. Alvin

    Alvin Senior Member (Voting Rights)

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    I'm glad it worked for you but we can test things that look promising, if someone is dedicated enough to get their product tested it can be done. Dr Klimas has tested several things that much of mainstream medicine has not, the one that looked promising failed. Rituximab was tested because of 3(?) improved patients. So if something is legitimate it can be done. Someone once said if there is a will there is a way. If you could make huge amounts of money by being legitimate then only a fool would refuse to find a way.
    When the goal is just to cash out then testing is not pursued.

    And lets not forget many people have claimed to be helped by homeopathy. Doesn't make it real thats why it needs to be tested. Homeopathy has failed many tests and it makes perfect sense why, it has no active ingredients, just faith in a bunch of lies.
     
    Last edited: Nov 24, 2018
  20. Milo

    Milo Senior Member (Voting Rights)

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    Here we are dealing with one of the most neglected disease, the least funded, and no medical specialty wants to take us on. It means that there are just a few pockets of doctors around the world who are knowledgeable enough to offer certain treatments, but none ofthem have been tested in a large scale clinical trial which would inform and guide them into what line of treatment would be helpful.

    Heck, we are still in the dark ages where there are not even biomarkers for the disease and we know that we are not homogenous. Some might have a different illness alltogether, while so many of us belong to different subsets, but these have not been established yet.

    Gc-MAF just like other treatments (prescription and non-prescription) and treatment protocols (Methylation, Yasko) have been opportunities for their proponents to benefit financially from despair from patients. We all know it can cost 1 billion and up to 20 years to approve a drug on the market with a designation for a particular disease. It is time that unfortunately many of us do not have.

    So many have been experimenting on their own, and the Gc-MAF story do tell how it can go wrong. And while most people were not harmed by this compound, too many have paid hundreds of dollars to try it out. There are no clinical trials to back any of the claims made. No proof of effectiveness. How was it manufactured, was it done according to standards? Did the patients who had a positive response had one because of the special powers of the placebo response, or was it truly the biological response?

    I am very curious to know what the penalty will be for Noakes. Time in jail? Fines? Probation? How do you punish ‘manufacturing, supplying and selling the unlicensed medicine’ let alone money laundering? (Of course this is the UK judiciary system, which may differ from American and Canadian standards).

    But most importantly, what do we need to learn as a community of patients, what is the lesson?
    From my point of view, we need mainstream research, we need a medical specialty, we need biomarkers, we need clinical trials. So desperately.
     
    Last edited: Nov 24, 2018
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