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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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The difference between MS and ME

Discussion in 'Neurological/Neuro-sensory' started by Lee Ann, Nov 27, 2011.

  1. Annesse

    Annesse Senior Member

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    Low glutathione is another common factor that all of these diseases share; just like low iron, zinc, vitamin D, B12, dopamine, phenylalanine, adrenaline, noradrenaline, high homcysteine, dysautonomia, spinal cord changes, elevated tumor necrosis factor and abnormal calcium metabolism. They also share the same symptoms due to the lack of the same hormones, neurotransmitters, lack of nutrients and conditions, such as the abnormal calcium metabolism. All of the scientific findings, including every symptom, every missing nutrient, and every dysruption that results, such as elevated tumor necrosis factor and dysautonomia can be traced directly back to one thing. And only one thing. The lack of proteases. Science has proven this. The evidence is overwhelming. Low glutathione does not explain the lack of hormones and neurotransmitters. It does not explain dysautonmia or the lack of vitamin D. The same thing that explains low glutathione explains low vitamin D and the lack of hormones and neurotransmitters.

    I believe I have shown conclusively by using scientific data that these diseases originate with the lack of proteases. So when does a hypotheses that is based on proven science become truth? The questions you ask, such as how SAMe and folates compare to lack of glutathione, have already been answered. Glutathione is also low in MS. Here is one study that addresses B12, folate and homocysteine in MS. You can find additional studies in all of the autoimmune diseases.

    http://www.ncbi.nlm.nih.gov/pubmed/19153046

    Vitamin B12 acts as a coenzyme in the transformation of homocysteine to methionine. This reaction is essential to make S-adenosylmethionine (SAMe). If all of these diseases lack B12, then they would of course not be able to produce SAMe. This is science and logic. You don't have to draw blood to prove this. Although you certainly could.

    These diseases have been named after their primary symptoms, i.e., lupus "marks of a wolf", rosacea "flushed blood vessels", myasthenia gravis "heavy muscles". I think they should be named after their cause, "Pancreatic Enzyme Deficiency Disease " (PEDD).

    The lack of these proteases explains the most definitive evidence we have in ME/CFS-The spinal tap studies.
    Suzanne Vernon, the scientific director of the Chronic Fatigue and Immune Dysfunction Syndrome Association of America stated, "You can't dispute these biological findings." The No. 1 finding was a protease imbalance. All of the other findings are also directly related to this lack of protease.

    I don't expect that most researchers, pharmaceutical executives, or even medical professionals will acknowledge this evidence. There would be no monetary benefit. This information would devastate the economy of the richest most powerful people in the world. It would put untold numbers of researchers and medical personnel out of work. Their jobs and their livelihoods depend on not finding the answer. The evidence will be ignored, but it cannot be denied.

    Rich,I think our research is compatible. We have much common ground. And if the people that are supposed to be helping are not, then we most certainly should. I don't expect autonomic agreement. I know you will weigh the facts and give thoughtful consideration to the evidence presented.

    I have talked a great deal about the immune system and its involvement in these diseases. Science has shown that the immune system is targeting abnormal peptides. It is also targeting unbroken down DNA and proteins, such as in the lupus NETs. The third component is elevated tumor necrosis factor (TNF). TNF is a cytokine. It is a normal necessary part of the immune system. I previously posted a study entitled: "Dysregulated expression of tumor necrosis factor in chronic fatigue syndrome.." The immune system is not broken. It is just not being regulated properly and it is just doing it's job by targeting abnormal proteins. What is responsible in the body for regulating TNF? As the following study states, " proteases are key regulators of the inflammtory response." It goes on to state, "proteases specifically process and release CYTOKINES." Is this a hypothesis? No, it is fact.

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2440796/

    Speaking of hypothesis and fact, I haven't posted anything concerning the disease process that isn't fact. I hope this information helps you question what you have been told. I hope it brings you closer to the answers you have searched for. The moderators and I have decided today that this thread is off-topic. This is my last post on this thread. I have publishing deadlines I need to attend to, but I hope when I am able to start posting again under a new thread.
  2. alex3619

    alex3619 Senior Member

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    Hi Annesse, its is not proven that low glutathione does not lead to low neurotransmitters and hormones. In particular if the substance is a protein (some are) or if the substance requires a protein for synthesis or regulation (all do) then its dependent on correct functioning of that substance. Now glutathione is required for correct folding of very many proteins - and the larger the protein the higher the chance of this. If you were to assay these proteins, you would get normal or even high levels, despite that their functional capacity was decreased. I would be interested in other studies on glutathione depletion, to find out the neurotransmitter levels. From what I read of your commentary, your evidence backs glutathione being important this way.

    I am very concerned about this for aconitase: let me use that as an example. Aconitase is not made by the mitochondria. It is a cell protein. It starts unfolded, and at some point has to be folded into its correct shape. I do not know if this is prior or after it enters the mitochondria - I suspect prior as the cell has extensive protein modification machinery. Glutathione is one of the substances used to do this folding by helping to create sulphide bridges. Once it has entered the mitochondria and is located correctly it can begin to convert citric acid. If its not folded correctly it can't. However, it also can't be shown to be deficient - there can be plenty of aconitase about, it just doesn't work if not folded. This might induce the cell to make more, and even more, leading to high aconitase levels, I don't know for sure - it would be interesting if someone could show elevated intracellular aconitase. That might be a sign of functional deficiency. Similarly high aconitase production might lead to higher protease synthesis to degrade the unfolded aconitase.

    So in other words its an open question. You could be completely right, or partially right, or mostly wrong. We don't know yet. The only way we can tackle open questions is to do more research. That is why I am interested in your model.

    On the relevance of established pathways, I discuss this in my blog on ME models:
    http://forums.phoenixrising.me/entry.php?1272-Issues-with-ME-Models

    Simply using existing pathways, or supected pathways (unconfirmed, hypotheses, etc) is only rung one.

    Bye,
    Alex
  3. alex3619

    alex3619 Senior Member

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    Hi Rich, most of my data came from urinary organic acid profiles too. It would be nice to see it from another analytical approach as confirmation. The early morning results often show elevated urinary citrate, but my understanding is late day results typically don't. This is why I suspect a circadian bias. Since those with ME or CFS often have circadian issues, I suspect, I don't know for sure, that this might account for some of the variation in results. Not every patient has a circadian rhythm in synch with the testing protocol.

    I do not know if reference ranges matter that much. The relative trend is more important, in my view, than matching to specific reference ranges.

    Doesn't NO rise in sleep? I don't recall for sure. This alone might explain some of the discrepancy, as NO is a temporary inhibitor of aconitase. The real question is why the aconitase can be blocked. I think aconitase misfolding is an important hypothesis for this, which means glutathione depletion is too, which bring us back to oxidative stress, methylation cycle, etc etc.

    It is worth mentioning for some who might not be aware that data on cellular metabolites obtained by measuring cells, not urine, also shows an elevation of pre-aconitase metabolites vs. post-aconitase metabolites, and this data was part of why I developed my first model.

    Bye
    Alex

    PS On proteases in CFS, the primary one that has been investigated over the years is elastase. Its nearly always elevated, but not univerally.
  4. adreno

    adreno 3% neanderthal

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    Patients with pancreatectomy seem to be doing fine on supplemental enzymes. They also don't seem to develop CFS or autoimmune diseases more than anyone else.
    ahimsa likes this.
  5. Jenny

    Jenny Senior Member

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    Hi Annesse

    The best way to get people to acknowledge the evidence you present and get debate amongst researchers and clinicians is to publish your arguments in an academic journal. I asked you before if you've done this - I assume not. Are you considering this?

    Jenny
    ahimsa likes this.
  6. Lee Ann

    Lee Ann

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    Hello Annesse,

    My symptoms were gradual over a period of about 15 months. The fatigue was the very last symptom and the most life altering. I have always been an active person. Running was one of my passions. You had mentioned in a previous post about exercising. I was in a state of complete exhaustion and spent 16 hrs a day in bed. However, I continued to move my lifeless body even if it were 10 minutes on my treadmill. Being physical also gave me a sense of purpose. If I lost that, the fight was over. I continue to walk 2 miles just about every day. It's not what it once was, but I'm am so grateful that I am able to experience that. I love to dance too and to me that is freedom. God Bless. Lee Ann
  7. Annesse

    Annesse Senior Member

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    Hi Jenny and Lee Ann,
    Jenny, I have been in contact with Dr. Woods (fibromyalgia researcher) and will let them take the lead on getting this information published in scientific journals. I think it would be difficult for a layperson such as myself to be taken seriously. Not that I wouldn't love to do it, but I just don't have the time to devote to getting it accomplished.
    Lee Ann, I am so glad you are finding joy in the things you CAN do. I love to dance too.

    Hi Rich, I think this information will clarify the discussion we had on gout and MS. I started this discussion by showing lupus patients lack the enzyme DNase 1. DNase 1 is a protease that breaks down DNA and proteins.The following information shows that uric acid is the final break down product of DNA.

    http://www.science-autism.org/Urate.htm
  8. richvank

    richvank Senior Member

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    Hi, Annesse.

    It's good to hear from you again. It's true that uric acid is the final breakdown product of the purines, which are a component of DNA.

    I don't mean to be contrary, but it's not true that Dnase1 is a protease. It is actually an endonuclease. It does break down DNA, but it does not break down proteins. Here is a reference on DNase1 from the OMIM database: http://omim.org/entry/125505

    I continue to believe that you have a plausible hypothesis for the treatment of lupus by sauerkraut, and I also think it is a plausible hypothesis for the treatment of other disorders that are truly autoimmune. I continue to maintain that ME/CFS is not an autoimmune disorder.

    I have read most of your book. I have been quite swamped lately by requests for help on individual cases, and am not able to keep up with them. I would like to be able to give you some detailed comments on your book, but have not been able to take the time to put them together. I think that some of your ideas have merit, but unfortunately they are mixed together with some statements in the book that are just not true, and I think this will subject your book to rejection by some people, which I would not like to see happen.

    I am currently at the annual meeting of the Orthomolecular Health Medicine Society, in San Francisco. At lunch today I shared your name and the name of your book with Dr. Michael Schachter, who is interested in enzymes in the treatment of cancer. He wrote it all down. He thought that your basic idea is plausible, too.

    Best regards,

    Rich
  9. Annesse

    Annesse Senior Member

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    Hi Rich,

    I appreciate your feedback Rich. I do think though that I will stand my ground on DNase 1. Although please understand I am not saying it is simply a lack of DNase 1 that causes autoimmune disease. And I do include CFS under that umbrella, because I believe we have redefined what is actually taking place in autoimmune disease. It is not a random attack on healthy body tissues, but rather an immune system response to improperly made peptides and improperly broken down DNA and proteins as researchers have discovered in lupus, rosacea and diabetes for instance. The other factor being dysregulated TNF. I just posted a study on another thread to demonstrate CFS patients have dysregulated TNF. The spinal tap studies in CFS also found a protease imbalance and amyloids. So, if under the new understanding of what is really taking place in autoimmune disease, I do believe CFS has been shown to be a part of the same pathway. That is why, in the end, we are not able to find any differences between CFS and MS. Or why the spinal tap studies found 732 identical abnormal proteins in CFS, Fibro, and GWS.

    Back to DNase 1. Here is a quote from the Department of Biochemistry. "DNase 1 as a digestive enzyme that is physiologically regulated is poorly understood. DNase 1 is mainly responsible for the digestion of dietary DNA before it can be absorbed into the body."

    We have been told for a very long time indeed that the immune system was attacking normal healthy tissue for no reason. Researchers from around the world are now realizing that this is not the case. We do not understand the full extent of what DNase 1 does in the body, as the Department of Biochemistry states. Regardless of this, I state in my book, it is DNase 1 and protease that are lacking. It is the inability to digest DNA AND proteins that is the problem.

    Solving a mystery, such as why in a review of 20 million patient records MS patients do not get gout, is just more evidence we have found the source of these diseases. We can trace every symptom of CFS and every valid scientific finding of every autoimmune disease back to missing pancreatic enzymes in just the same way. How can anyone overlook that?

    Thank you for your input, truly, though. I look forward to discussing this with you further.
  10. mellster

    mellster Marco

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    Hi Rich,

    Looks like the conference is right by Alta Plaza Park, one of the nicest parks in San Francisco - and a couple of blocks from where we currently live (will be moving soon though). With this weather you should try and enjoy the park as much as possible ;)
    cheers

  11. topaz

    topaz Senior Member

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    Hi Annesse

    I have just come across this thread and have spent the evening reading 17 pages so I will have to go back and re-read and absorb some more.

    Q: Can you define inability to digest proteins/poor protein digestion?

    Are you referring to one process in particular or the series of processes starting with insufficient HCL in the stomach through to absorption via epithelium and the proper ratio of good intestinal bactria or specifically to the lack of proteolytic enzymes from the pancreas that are needed to digest protein? Or is the latter dependent on all the former (plus more)??

    Rich @#152 explains the chain but it all appears to start with insufficient HCL. If that is the case can we increase it naturally via methylation protocol (due to its impact on restarting glutathione) or by HCL supplements or both until sufficient is produced? 5MTHF will help heal the epithelium and the sauerkraut and other probiotics will help. All the conditions referred to above seem to share IBS and fermented vegetables can only be of benefit.

    Thank you. I have enjoyed this thread very much.
  12. topaz

    topaz Senior Member

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    And at Post 141: Annesse, it is an interesting theory you have. Do you have any thoughts of enhancing the activity of DNase 1? I believe many CFS sufferers (including me) have already tried supplementing pancreatic enzymes without success.


    Annesse

    Are you able to comment on the above two posts please?

    I apologise if you have and I missed it as I have just digested 17 pages at once.

    Also at post #90 you say 'If you lack optimum acidity from inadequate digestion of protein, you will not have enough ionized calcium. In either case, you are a candidate for arthritis."


    Q: What is "optimum acidity"?

    Thank you
  13. Annesse

    Annesse Senior Member

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    Hi Topaz,

    I am referring to the entire process of digestion. The entire GI tract needs to be addressed in order to restore the body's ability to properly digest proteins. There is most likely an overgrowth of pathogenic bacteria and yeast, loss of intrinsic factor, insufficient HCL, and lack of pancreatic enzymes.

    Here is a study that found significant decreases in the proteinogenic amino acids.(amino acids which can be found in proteins) The study also states, "Several studies have suggested that disturbances in amino acid homostasis occur in CFS"

    The study also found a "significant decrease in red cell distribution" and "succinic acid". Both of these findings are consistent with lack of B12. B12 is responsible for for the conversion of odd chain fatty acids into succinate. B12 is only found attached to dietary animal proteins and I have posted studies to show that without pancreatic protease, you would not be able to bind or transport vitamin B12. These same protease digest dietary proteins, so this is strong evidence that we are lacking these enzymes.

    I personally don't believe any attempt to to fix the GI tract through supplementation will restore your body's ability to digest proteins. I have posted studies that show supplementation with amino acids,for instance, led to an increase in disease symptoms. They are just the components of proteins and if someone has lost the ability to digest proteins, they would not be helpful and may, in fact,lead to more harm. If you are unable to bind and transport vitamin B12 because you have lost protease will you successfully be able to circumvent the body's design and restore the lack of cellular B12 by taking supplements? Or will you cause yourself a great deal more harm? The study I posted from Norway found a 38% increased risk of cancer by taking B12 and folic acid supplements. If this is something you are unsure of, I would err on the side of caution. This is a huge risk to take. And in my opinion, completely unnecessary . If you work on healing your GI tract and give your body the nutrients it was designed to have in the form it was designed to use them in, it will do the rest. I know you have some more questions, and I can address those in my next post.
  14. Annesse

    Annesse Senior Member

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  15. topaz

    topaz Senior Member

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    Thank you Annesse for your response

    I look forward to your view on my other questions.

    Can I add one more? lol! At post #173 you say "If you are unable to bind and transport vitamin B12 because you have lost protease will you successfully be able to circumvent the body's design and restore the lack of cellular B12 by taking supplements? " Does this apply to sublingual or iv B12?

    Thank you
  16. Annesse

    Annesse Senior Member

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  17. hurtingallthetimet

    hurtingallthetimet Senior Member

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    seems like they are both alot alike...

    one of saddest differences i think is the lack of compassion and understanding for me suffers becuase its so invisible and seems even alot of doctors have little sympathy for how painful it can be
  18. topaz

    topaz Senior Member

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  19. adreno

    adreno 3% neanderthal

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  20. xrunner

    xrunner Senior Member

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    Annesse,

    I agree with you that supplementation by and large is not necessary, that's my experience.
    However, I'm not sure I understand whether you're proposing an alternative solution to solving the metabolic problems you have highlighted in various posts or just highlighting some of the issues that come up in CFS to support a new hypothesis about its causes etc.

    I noticed that a couple of posts asked a similar question but got no answer. To rephrase, do you have an alternative solution to sort out the problems you highlighted?
    If yes, can you describe it?
    ahimsa likes this.

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