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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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DRACO antiviral

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by RYO, May 22, 2014.

  1. Hip

    Hip Senior Member

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    I wonder if your severe chest pain might have been pleurodynia (aka, Bornholm disease or "devil's grip"), which is typically caused by coxsackievirus B. Coxsackievirus B can also cause myocarditis, which also involves chest pain symptoms.

    As the virus that triggered my ME/CFS spread around my friends and family (around 30 people), it caused several sudden myocarditis/pericarditis-related heart attacks in the previously healthy, and two cases of chronic myocarditis/pericarditis. Coxsackievirus B is a highly underrated virus, that causes a lot of different health problems. It's strongly linked to type 1 diabetes. This virus should be put on the vaccine schedule. I've read that it would be very straightforward to create a coxsackievirus B vaccine (ie, there are no technical hurdles as there are with a HIV or EBV vaccine). Such a coxsackievirus B vaccine might dramatically lower the incidence of ME/CFS, diabetes, and heart attacks.


    Though from the ME/CFS perspective, the antiviral angle is not the only one that might yield results. The symptoms of ME/CFS may be routed in viral infection in many cases, but in addition, there may be upstream causes and mechanisms that are responsible for actually producing the various symptoms of ME/CFS. If those upstream mechanisms can be treated, then it might tackle the symptoms of ME/CFS even if it does not address the original viral cause.

    For example, this thread about the huge reduction in brain fog experienced by a couple of ME/CFS patients when taking ceftriaxone (Rocephin), a drug which elevates GLT-1 glutamate transporter expression and activity, and thereby clears excessive extracellular glutamate from the brain. Dr Cheney thinks excessive glutamate may be driving the cognitive symptoms of ME/CFS. This glutamate is generated by brain inflammation. I am looking into trying Rocephin or a similar glutamate-clearing drug called riluzole, to see if this improves my brain fog.

    This excess glutamate theory of the cognitive symptoms of ME/CFS in fact ties in with Michael VanElzakker's vagus nerve infection hypothesis in the following way:

    Vagus nerve infection ➤ causes release of cytokines IL-1β, TNF-α and IL-6 ➤ these stimulate the vagus nerve ➤ this triggers brain inflammation ➤ brain inflammation releases glutamate in the brain ➤ and this may underpin the cognitive symptoms of ME/CFS.

    So if we can intervene in the final stage of this hypothesized causal chain, it may treat at least the cognitive symptoms of ME/CFS.

    Glad you are getting benefit. I am myself always after the "holy grail" of a sustained improvement in my ME/CFS symptoms. Even a 10% – 15% improvement can make a big difference. A few years ago I was often bedbound one or two days a week; but now I almost never need to lie down during the day. I am assuming that the supplements and drugs I have been taking are responsible for this. But I am always on the lookout for the next drug or supplement that will give me another 15%.
     
    Last edited: May 30, 2014
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  2. Waverunner

    Waverunner Senior Member

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    Venture capital is certainly a great possibility for all kinds of new products and even drugs. The problem in the drug approval field is, that it is very hard to raise 800 million dollars when the illness is new and very heterogeneous like CFS. I read an article about a big pharma company last week. They only spend 1-3% of sales on R&D.

    On a conference for pharmacoeconomics I spoke to an employee of Merck. He told me, that they have drugs in the pipeline/drawer for the next 20 years at least. They could close down R&D and nothing would happen.

    There is not one conference, may it be ASCO or whatever, where experts don't draw attention to the problem of drug approval and testing. It takes too long and it is innovation hostile. A patient who has 2 months to live cannot wait 15 years, till the drug becomes available. Yet, this is exactly what is going on. Patrick Soon-Shiong, billionaire and inventor of Abraxane, on a talk for UCTV said, that it took him 15 years till Abraxane was approved for metastatic breast cancer, while some patients only had a few weeks to live when he started the approval road.
     
    Last edited: May 30, 2014
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  3. RYO

    RYO

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    Do you think it would at be at least theoretically possible to develop DRACO overseas. It would be similar to your idea for gene therapy. It wouldn't be ideal but at least it would give CFS patients an option. There are many patients who travel to other countries for other medical treatments due to economic constraints.
     
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  4. RYO

    RYO

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    I am looking into obtaining ibudilast from my contacts living in Japan. I also read Mevacor or Lovastatin can inhibit glial cells. Using statin medication for immune modulation makes me nervous. I hope it will not cause exacerbation of my lower extremity pain and weakness.

    I will update post if any improvement.

    I have tried many supplements and none have helped.
     
  5. Waverunner

    Waverunner Senior Member

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    Excellent point. The answer is, I hope so but I'm not sure.

    We have many stem cell clinics abroad e.g. in Mexico and I would consider most if not all of them to be fraud. But what happens if these clinics actually offers something which works and cures patients?

    Let's look at gene therapy. We would only need one scientists in the world, who publishes a paper on how to use CRISPR for replacing causative variants in the clinical practice. From one second to the other, every clinic in the world, which has qualified scientists and the right equipment would have access to individual gene therapy. It doesn't matter who you are, where you come from, what your family history is, what illnesses you suffer from, as soon as your genome is sequenced, these clinics can cure mutations at the molecular level. The great thing about CRISPR is, that it can be sued for any of our 3 billion base pairs. If this works, all the big clinics in the world, no matter where they are located, will jump on the train and offer gene therapy.

    Regarding drug development and DRACO, I have no idea, how difficult it is to develop these drugs with a limited budget. In addition to this I have no idea, what patents are needed. In the end, if someone makes the start and the drug works, many, many more patients will follow and enough income and awareness should be created to make it a success.
     
  6. Hip

    Hip Senior Member

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    DRACO has already been created as a molecule and tested in mice studies and in cell lines, where it has been shown to be effective against a very broad spectrum of viruses, nontoxic in vitro and in vivo, and nontoxic to 11 mammalian cell types. In the murine trials, no toxicity to any organs was observed. So this antiviral compound looks as safe and nontoxic as it is potent and universal.

    You can read Todd Rider's 2011 paper here: Broad-Spectrum Antiviral Therapeutics.

    At the end of this paper it says that the funding for Todd Rider's research came from the:
    National Institute of Allergy and Infectious Diseases and the:
    New England Regional Center of Excellence for Biodefense and Emerging Infectious Diseases,

    with previous funding from the:
    Defense Advanced Research Projects Agency,
    Defense Threat Reduction Agency, and
    Director of Defense Research & Engineering.

    I am not sure how much money he received, but it was clearly enough to develop, synthesize and test out the DRACO drug molecule in mice, and in cell lines.

    It's interesting that some of the funding came from military biodefense sources. If only the terrorist threat from biological weapons were at least perceived as higher, then this research might have been pushed through to its completion. It's not clear why it was shelved, given that this is a nontoxic and almost universal antiviral, and would thus seem perfect for countering bioterrorist threats, as well as any future flu epidemics, which as we know, are certain to occur.

    Isn't it ironic that humans will pull out all the stops when it comes to military defense, but when a mere 17 million people worldwide have severely curtailed, almost non-existant, subhuman lives due to the horrible viral disease of ME/CFS, very little effort is made to combat that.

    For ME/CFS patients, one can hope that the biological warfare threat from terrorists goes up in future: that way, DRACO might be funded by the military, and then Al-Qaida might inadvertently lead to a cure for ME/CFS. Warfare often leads to great technological advances.

    However, in absence of a helping hand from Al-Qaida, crowd-funding DRACO might be the best way forward.

    I wrote to this DRACO funding website a week ago, asking for the current status, but received no reply. So I assume that campaign is dead. It may be an idea to set up a new campaign.
     
    Last edited: Nov 2, 2014
  7. Waverunner

    Waverunner Senior Member

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    I don't understand why we can't travel abroad, order DRACOs from a lab and use it for ourselves. Starting with extremely low doses would be a way to begin with. If it works, more and more patients will follow. Healthy PWCs will have enough energy to start fighting for treatment access and it should fairly soon become available in the Western countries. It should be no problem to attract enough venture capital then.
     
  8. RYO

    RYO

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    I don't think campaign is dead. Here is their response regarding their future plans -

    Initial inquiry:
    What are Dr. Rider's thoughts about timeline for human trials? Also, how much funding would be needed to devote a part of Dr. Rider's research toward application of DRACO to chronic fatigue patients?

    Response:
    Here is a basic “funding level to action” map. The first goal is $500,000.

    $10,000 would help us order supplies to begin new work on DRACO.
    $100,000 would help us produce new batches of DRACO for new trials against viruses.

    $500,000 would help us carry out the first tests of DRACO in cells against retroviruses.
    $1,000,000 would help us optimize DRACO’s performance against retroviruses in cells.
    $1,500,000 would help us test and optimize DRACO in cells against multiple retrovirus strains.

    As far as Chronic Fatigue Patients, i can report that feedback to Dr.Rider but our priorities lie in ending viral suffering and death so i'm not sure exactly what you mean.

    Thanks,

    Matt

    My reply:

    There are researchers and physicians (ie Dr. Montoya at Stanford) who believe CFS is a disease caused by "smouldering" viral infection such as enterovirus, Human Herpes Virus 6, and Epstein barr virus. It is estimated that 17 million patients are stricken with this debilitating disease. HIV patients are relatively unaffected until they experience drop in CD4 count with subsequent opportunistic infections. There are many CFS patients that are bedridden for years. They suffer from brain fog, autonomic dysfunction (orthostatic hypotension), and disabling myalgias. Most patients lose their ability to work and become socially isolated. It is the worst form of viral suffering. Laura Hillenbrand (author of Seabiscuit and Unbroken) is a well known individual who has suffered from CFS for over 20 years. She wrote an essay in New Yorker magazine in 2003 titled "A Sudden Illness". You can easily Google and read the article youself. It is eloquently written and it describes in detail the suffering that CFS patients endure.


    Response:

    It's the hope that DRACO would be able to eradicate any and every virus from the body so it should help in these cases. Do you have any contacts that we can reach out to to spread the word once we are ready to raise funds? It will soon come down to people and dollars to determine if DRACO can be the cure we hope it to be. Have a good day, Matt


    Commentary - I think it would be in the best interest of CFS / ME community to use our own or develop our own funding organization instead of contributing directly to DRACO fund individually. It would be nice if we could collaborate with other research groups such as those at Stanford, Chronic fatigue initiative (Hutchins Family Foundation) and other organizations in UK and AU.

    Any comments from members with fund raising experience would be greatly appreciated.
     
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  9. Waverunner

    Waverunner Senior Member

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    I wish someone would provide the needed funding. In all these funding goals however, I didn't see one single word about human trials. Even if you get enough money for these goals, you haven't done one single test in humans. Add another 800 millions and in 15 to 20 years it might become available.

    It would be much cheaper and more efficient to fund your own lab and production unit aborad. Then start treating PWCs who are most ill and voluntarily agree to take part in this trial and know about a possible fatal outcome. If you need 3 to 4 million dollars to do the above testing, this would somehow be manageable but if you need an additional 796 million dollars, this won't work out. It's the same with many other severe diseases, there are patients who simple cannot wait 15 more years.
     
    garcia likes this.
  10. Hip

    Hip Senior Member

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    I have just started a new thread here in the fundraising section of this Phoenix Rising forum asking for those with fund raising experience to comment.

    It also seem to me that other patient groups should be told of DRACO, so that they can instigate their own fundraising campaigs. The HIV/AIDS community in particular should find DRACO very interesting. It should be much less toxic that existing HIV drugs, and possibly work much better than these existing drugs. Furthermore, unlike the ME/CFS community, nearly all of the HIV/AIDS community on ARV drugs are healthy and able to work, and thus are likely to be wealthier and so good fundraisers.
     
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  11. Hip

    Hip Senior Member

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    If, as stated above, is costs $100,000 to produce new batches of DRACO for new trials against viruses, then nobody is going to able to afford to pay a biochemical lab to make DRACO. Presumably the compound will only become cheap once you get the economies of scale of a large production setup.

    In any case, without proper testing, it would not be possible to know whether DRACO might have some unforeseen adverse effect.
     
    Last edited: May 31, 2014
  12. Waverunner

    Waverunner Senior Member

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    Proper testing in cell cultures etc. would be warranted, indeed. Economies of scale play a role in a free market but not very much in the current system. If you need 800 million dollars for approval you will charge the customer for the paid costs when the drug is approved. It doesn't matter which newly approved drug you look at, they are all very expensive, no matter how much is sold. Only when patent protections runs out and generics or biosimilars enter the market, you see a steep decline in prices.
     
  13. RYO

    RYO

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    Understandably, we are looking at DRACO from the perspective of the desperate patient. If you look at our limited knowledge of pathophysiology of CFS / ME, we are just scratching the surface. Best case scenario is that we attract talented scientists, researchers, and clinicians who recognize/appreciate this disease. Think of how many years since HIV was a mystery disease and millions of dollars have been spent towards understanding HIV and developing treatments.

    In my opinion, it would be an overwhelming success if the medical community were able to offer objective diagnosis and treatments that could make CFS / ME a more tolerable chronic illness. A cure would certainly be a miracle.

    Other patients with chronic illnesses have to endure the same flawed current medical delivery system with often bizarre incentives and pitfalls.

    With all of that said, I want to be optimistic. 20 years ago, we would have referred to genomic medicine and "biologic" treatments as science fiction. Now we can view a presentations about DRACO on YouTube.

    The pink ribbon is one the most recognized symbols of breast cancer support. Hopefully, the CFS / ME community will have its own symbol one day that evokes the same response. I am not sure if there are many positives about suffering from CFS but it has helped me to appreciate the suffering of others. I suspect Laura Hillenbrand found as much inspiration for herself as her readers when she wrote "Unbroken: A World War II Story of Survival, Resilience, and Redemption".
     
  14. Waverunner

    Waverunner Senior Member

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    You are right and I truly hope, that we will have some breakthrough soon. As soon as we get WGS going, a lot of new information will flow in. It's just a pity, that we have so many drugs in drawers. As long as we don't test these drugs for CFS patients, we will never know if they work.

    It's the same for IBD. Scientists find out, that an Enterovirus Species B may play a causative role. What happens now? Nothing. Thanks to the approval process we don't have one single fitting antiviral and nobody is developing one. Instead pharma companies love to suppress inflammation. This will never cure or touch the cause but is a great way to earn lots of money over the lifetime of the patient.
     
  15. acer2000

    acer2000 Senior Member

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    Sounds sort of like another compound - bavituximab, that was similarly funded by the DOD as a "universal anti-viral". That drug used a slightly different mechanism, I believe it was an anti-ps MAB. I had similar questions about "what if too many cells get triggered into apoptosis" with that one. But apparently they are doing human trials in certain types of cancers now. So maybe there is hope for these types of drugs?
     
  16. Waverunner

    Waverunner Senior Member

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    Great finding, thanks.

    "Bavituximab binds to phosphatidylserine which is exposed on the surface of certain atypical animal cells, including tumour cells and cells infected with any of six different families of virus. These viral families contain the viruses hepatitis C, influenza A and B, HIV 1 and 2, measles, respiratory syncytial virus and pichinde virus"

    After reading this on Wiki I was very disappointed because these viruses don't seem very relevant for CFS and other chronic diseases but then I found this interview:

    http://www.bmedreport.com/archives/4486

    "Dr. Thorpe further responded that Bavituximab has not been studied with genital or oral herpes or EBV. Also, he said that it is not known whether cells infected with viruses like these which can become latent will continue to have exposed phosphatidylserine. He went on to state that this may not matter because the current thought is that you might be able to deplete the pool of virus during the active phase of infection and if the latent pool of virus can not be replenished then it will die out."


    http://ir.peregrineinc.com/releasedetail.cfm?ReleaseID=817072

    Fast track has been granted but Phase III is only in enrollment, which means, that it takes at least 4-5 years, till it becomes available.
     
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  17. RYO

    RYO

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    Yes, I think there is huge potential not only for CFS patients but cancer patients especially. In both instances, a better understanding of our immune system may lead to breakthrough treatments. One of the challenges will be that sometimes the immune system works like a series of escalating cascades often leading to "collateral" damage. ARDS of lungs during acute sepsis reaction is an example.

    I think Dr. Chia once alluded that a CFS treatment may come as a side benefit from a treatment developed for another disease state.

    If a promising antiviral such as DRACO caused significant apoptosis, we may learn how to lessen the blow by using similar treatment and prevention techniques applied to tumor lysis syndrome. I am hoping that someone develops a immunofluorescence PET scan so we have an idea of cell burden before treatment because "cell burden" may vary from one individual to another.

    http://nuclearmedicineandmolecularimaginggateway.net/ArticlePage.aspx?doi=10.1007/s00259-007-0451-0

    Conclusion
    Successful PET imaging of TNF-α expression in acute inflammation and integrin αvβ3 expression in chronic inflammation provides the rationale for multiple target evaluation over time to fully understand the inflammation processes.
     
    Last edited: Jun 1, 2014
  18. RYO

    RYO

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    There has been some media coverage recently of oncology meetings where the main buzz is around immunotherapy - manipulating T cells to attack tumors. Perhaps some developments may help treat CFS patients one day.

    This is all under the hypothesis that CFS is a "viral disease". We need more studies that prove this is the case.
     
  19. acer2000

    acer2000 Senior Member

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    Yeah not to get too far off track, but that article about the woman with multiple myloma who went into remission days after receiving a mega dose of measles vaccine was pretty interesting.

    http://www.startribune.com/lifestyle/health/259155541.html

    I think immune modulating/manipulating drugs are going to be the next frontier in infectious disease and cancer treatment. I just hope they don't make too many mistakes in the process. There was also a story about kids who got cancer as a result of an engineered retrovirus that was supposed to cure their cancer. :-(
     
  20. ScottT

    ScottT

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    Hello,

    I wanted to give you all an update on The Draco Fund. I started the push to create it a few years back and after overcoming a few hurdles I'm happy to say that it is up and running. We received our 501.3c status and are currently accepting donations. I did notice another thread was created so I'll post this there as well.

    www.thedracofund.org

    Thank you all for your interest and I wish you all the best!
     
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