The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Re : Norway Patent for ME/CFS treatment using Oxalate

Discussion in 'General ME/CFS Discussion' started by mariovitali, Jun 18, 2018.

  1. mariovitali

    mariovitali Senior Member

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    I am posting some thoughts here because i did not want to derail the original thread :

    https://forums.phoenixrising.me/ind...eatment-by-victoria-bohne-in-norwegian.44871/

    cc : @Frenchguy @Janet Dafoe (Rose49) @Hip @perrier @JES @pattismith

    Regarding the patent itself : I do not understand how one is able to practically patent a mixture of compounds that can be easily found by anyone. In order to patent something you must explicitly state the ingredients and the exact composition that comprises the solution. If you do this with easy-to find ingredients then anyone can just follow the instructions and prepare the solution for themselves.

    Moving on now to the ingredients comprising the patent : I saw Spinach being mentioned and also ALA, Thiamine, Biotin, Niacin.

    My understanding is that the inventors are using Oxalates to inhibit Lactate Dehydrogenase :

    As discussed, Liver Disease can be a potential reason for increased lactate levels :


    Source : https://www.semanticscholar.org/pap...nson/b9ab0b17a45c1f2e1b65b0c8417392a6045a28b6

    The use of Spinach deserves a closer look : Spinach is not only loaded with Oxalates, but is also rich in Vitamin K (100 g = 460% RDA) and a substance called Dolichol.

    Here is a snapshot from a user called "Trynottoworry" who first speaks about the Unfolded Protein Response, N-Linked Glycosylation back in 2011 and talks about "The Spinach" Diet. Source is from a forum called propeciahelp.com, a site for people who took Finasteride and ended up with "Post-Finasteride Syndrome" a syndrome with several overlaping symptoms as with ME/CFS :


    dolichol.png

    Note also the mention of a gene called GPT :

    The inventors state that their patent may be useful for Liver Disease. I previously discussed that Spinach contains Vitamin K and also Dolichol.

    Interestingly, a soilution called Ropren (which i tried) uses a patented solution to treat Liver Disease and Chronic Hepatitis ;

    Source : http://www.solagran.com/ropren.html


    I have previously expressed my concerns for Niacin for people with Liver Disease. Vitamin K metabolism has been discussed (see discussion here) as an important component on the treatment of ME/CFS (hypothesis) and has been communicated to both Professor Ron Davis and Dr Phair.
     
    Last edited: Jun 24, 2018
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  2. Frenchguy

    Frenchguy Senior Member

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    @mariovitali

    I think they deposed a patent because there is no existing pill or complement which have the desired concentration of oxalate and others.
    The fact that people have to prepare the mixture each day is great deal because oxalate at high dose can kill. They fear that people experiment at home.

    They proposed to give the project for free but no one is interested. They were in contact with a pharmaceutical company named Pfizer but they declined because they have others projects.
    Not suprising for me because I was in contact with Roche at time and they tell me they haven't interest in treating ME CFS.

    According to the inventor Bohne, there is a problem because earth doesn't have the necesserary ressources to treat all people (about spinach I think).

    Ex : 150000 patients in france and they need 100g spinach each day so we need 15 tons each day. Impossible.

    If it works after all, it can help scientists to understand the disease and find a alternative.
    As Ron Davis said, we maybe need just 2/3 days treatments so oxalates are probably not the best and quick method to treat ME, but can represent a treatment now.

    When i see the components list, I think just ascorbic acid, sugar , potassium, magnésium, iron, calcium and for sure oxalates are the main components. Others relate to the fruits/vegetables in the composition.

    A thing I looked is the fact they treated severe patients and they recover. The girl i know was at 5% and now 70% (she can drive, go to a party, take care of this son etc). The 70% in not objective but the 5% with the photo.

    After all, this is in the right track with these fact that R.Davis can correct the signal when adding ATP or pyruvate.
    Others scientists like Fluge and Mella have demonstrated excess lactic acid in muscles of patient after short walk, and lactic acid surrounding the brain
     
    Last edited: Jun 18, 2018
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  3. ChrisD

    ChrisD Senior Member

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    Eating Spinach worsens my condition ten-fold, probably because of Oxalates or Histamine. It leaves me with bad air hunger, chest pain, worsened muscle cramps and joint problems.
     
  4. Hip

    Hip Senior Member

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    I few years ago a family member gave us a lot of rhubarb which she had grown herself; and so in one week I had rhubarb dessert perhaps 3 or 4 times. That seemed to trigger a bout of depression and a state of generally feeling worse, so ever since then I have viewed high doses of oxalate as something that may be detrimental for me.

    Of course, in some ME/CFS treatments, you can feel worse before you getter better.
     
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  5. Learner1

    Learner1 Forum Support Assistant

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    @mariovitali I have high oxalates and they sure haven't cured me. I also take ALA, Thiamine, Biotin, and Niacin. Niacin is needed to make NAD which makes ATP, so staying away from it is not the answer.

    Oxalates crystals can get into one's tissues and cause pain. They can cause sulfate dumping, leaving the body short of sulfate needed for critical tasks. And they can cause loss of calcium, causing osteoporosisis.

    Being deficient in B6, and having gut dysbiosis, and/or poor gall bladder function can encourage the development of oxalates.

    http://www.beyondmthfr.com/side-high-oxalates-problems-sulfate-b6-gut-methylation/
     
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  6. Wonkmonk

    Wonkmonk Senior Member

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  7. mariovitali

    mariovitali Senior Member

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    I believe that I should make a clarification : I am not trying to suggest that Oxalates can cure ME/CFS. I wanted to present a hypothesis on how Vitamin K and / or Dolichol may be of help to some patients apart from Oxalates if this patented solution did have a positive effect and if Spinach is used as part of this regimen.

    Speaking for myself , Supplementing with K2 is one of the Vitamins that keeps me symptom free. I found this through several attempts of stopping It and noticing my symptoms.
     
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  8. Frenchguy

    Frenchguy Senior Member

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  9. Frenchguy

    Frenchguy Senior Member

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  10. Frenchguy

    Frenchguy Senior Member

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    @mariovitali

    Yes Mario. But i think many diseases are in the umbrella of ME/CFS. We have members like you, others with "post chemo fatigue syndrome", others potentially related to chronic intracellular infections, others with well know post viral fatigue, etc etc.

    Oxalate are maybe only for those who have abnormal lactate build up which can be measured by lactate blood level before / after exercise.

    I am very interested because for my case after many treatments which does nothing and my labtest, this theory fit well.

    As long i am lying down, my face look well. If I exercise, I have rapid lactic acid build up in muscle and head which give me face swelling and severe headache which don't respond to pain killer.
    Only rest and water which contain bicarbonate like Vichy, Saint Yorre ease the pain and speed up the "recovery".

    At the beginning of the disease when doctors said me "you are depressed, exercice and you will be fine", I pushed myself to work at my home with my father and I had severe sweat but with a very bad odor. I had to change sweatshirts every 2 hours. Unexplainable, but now I wonder if the lactic acid build up was the cause of this very bad odor.

    When i see the pain sensation of lactic build up in muscle, it seem concevable to me that lactic acid build up around the brain can cause severe pain and cognitive distrurbance.

    I don't say it's true for all, just a theroy based on my case
     

    Attached Files:

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  11. Learner1

    Learner1 Forum Support Assistant

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    Perhaps, then, you can title your thread differently to reflect the hypothesis you are presenting, and not misdirect readers with something else. Oxalates can do some very bad things and people may get the idea that they are helpful.
    Again, I take plenty of K2, and though it may be beneficial, it hasn't cured me or done much for my symptoms.

    This is a complex, multiorgan system disease, involving a plethora of metabolomics abnormalities. Focusing in on one or two biochemicals may be very tempting, but is unlikely to cure us. It's getting the entire symphony playing together which is what many of us need...
     
  12. JES

    JES Senior Member

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    It is unlikely (or almost impossible I'd say) to cure everyone with one treatment as there are believed to be subgroups. The patent description contained remarkable improvements documented for patients. They also used a placebo drink (added calcium carbonate to remove effect of oxalates), which didn't produce the same effects. But even if there was a placebo effect present in the results, the improvement in those few severe patients was so large that it's very hard to attribute it to placebo.

    Regarding oxalates, I think it's too simplistic to say that oxalates do bad things. Oxalates are present in a plethora of foods and most people never experience any issues processing them. According to a source, only 20-40% of the oxalates in our blood comes from the food we eat, they can e.g. also be created from amino acids in the liver. Dosage is of course the key, that's why rhubarb leaves for example are considered toxic.

    I think the dosage of oxalates that is suggested isn't really the big issue, the bigger issue is what the mix contained and how to achieve the desired ratio of oxalates.
     
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  13. Runner5

    Runner5 Senior Member

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    I typically eat around a half pound or more of greens per day including spinach. It's good stuff.
     
  14. Wonkmonk

    Wonkmonk Senior Member

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    I think any country with any agricultural production wouldn't have a problem producing a few 1000 tons of spinach. It could also be imported. Or it might possibly work in freeze-dried and/or powder form or pasteurized smoothie (not juice because of low solvability of oxalate), too, then it could be imported as a supplement/neutraceutical. It would also be rather cheap.

    If it actually helps, that would be very good news for everyone, especially in lower-income nations who can't afford more expensive medications. But from what I have seen in this and the other thread, I am rather sceptical.
     
  15. perrier

    perrier Senior Member

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    Hello, bonjour
    You say the Bohne team treated various people, and you know one. How does one even get them to treat anyone?

    Secondly, aside from spinach other greens have high oxalate. So, this concern about availability seems a touch odd. The priority should be in helping people. Spinach grows quickly and very easily, as we all know.
     
  16. Frenchguy

    Frenchguy Senior Member

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    @perrier

    Apparently, they treat 13 or 15 people. Bohne prepare the solution for them.
    The big problem seem to be the legislation in Norway. The treatment has to be accepted by the government before prescription can be authorized if I understand correctly.
    Given we have the list of necessary components, I think à campounding pharmacy can make the preparation. It doesn't seem difficult to prepare at home but we haven't the entire list of ingredients needed.

    Like @Wonkmonk said, the availability of spinach doesn't seem to be a problem given the actual production.

    After re speaking with this person, i am now pretty convinced she had ME (she had symptoms which sound specific for me like head pressure, brain fog, no strength in arm or leg, sounds and light sensisivity, sore throat, low body temp, constant cold feet and hand).

    When I see the very septic reaction of some people (which I understand because before speaking with her I was very septic), I can understand that inventors fail to found support for their work. Scientist are very septic until there is a good evidence that a treatment works after blinded trial. Like many ME people, I am very septic when I see a post with 600 responses and people say they improve with one vitamin.
    Given oxalate can interact with lactic acid production, pyruvate and ATP, i am much less septic than others threads.

    The first difficulty is to see if there is a financial interest and it doesn't seem to me, the second is to see if people have "traditional ME". We all see people who get miraculously better in few months and years after non sense treatment. Does they have "ME/CFS" ? (What is ME/CFS?).

    When I see inventors in photographs, and the fact that they do not know where to go, I do not think they are businessmen.

    Anyone know if Ron Davis manifest interest ?
     
    Last edited: Jun 19, 2018
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  17. mariovitali

    mariovitali Senior Member

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    cc : @Janet Dafoe (Rose49)

    I just completed another round of analysis using Machine Learning. Lactate was not part of the Medical topics being looked at and so i added it to the software to see its relevance to ME/CFS.


    In previous runs, Liver Disease was the most relevant topic, followed by Sepsis and Norepinephrine. To my amazement, Lactate has risen to the top-5 positions. Here is a snapshot from the run :

    lactate.png

    Note that -by far-, the most relevant topic is Liver Disease.


    A second type of analysis, tries to identify associations between Medical Topics. I therefore added Lactate to see what the software would come up with. In other words the question here is "which potentially relevant Medical Topics to ME/CFS are associated with Lactate ?" Here is the snapshot :



    featureselection.png

    PDHC is Pyruvate Dehydrogenase Complex. NDUFS7 has been discussed in Phoenix Rising as well , where a user talks about elevated Lactate levels :

    https://forums.phoenixrising.me/ind...utations-in-ndufs7-what-does-this-mean.30516/
     
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  18. Frenchguy

    Frenchguy Senior Member

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    @mariovitali

    Interesting Mario, the machine learning use pubmed data ?
     
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  19. mariovitali

    mariovitali Senior Member

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    The software analyzes millions of relevant PUBMED articles and then generates hypotheses as to which Medical Topics are likely to hold the solution to ME/CFS.

    To achieve this it uses a number of analytical techniques including Machine Learning, Network Analysis, Natural Language Understanding, Root Cause Analysis and others.
     
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  20. pamojja

    pamojja Senior Member

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    Wow, that's interesting. What is the name of the software?
     
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