The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Astounding Norwegian research breakthrough with Rituximab can solve CFS mystery!!!

Discussion in 'Rituximab: News and Research' started by urbantravels, Oct 19, 2011.

  1. ramakentesh

    ramakentesh Senior Member

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    Nothing surprises me...

    have you ever looked into abnormalities in folate and b12 metabolism and epigenetic promoter methylation? As in gene silencing through abherant methylation of gene promoters?
     
  2. Freddd

    Freddd Senior Member

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    A very little. What are you getting at, that in the lack of mb12 and methylfolate, that together control the DNA transcription going on in cell division could be corrupted by inadequate quantities of either or both? Multiple cancers are being investigated as being caused by this mechanism in deficiency, and that this can cause autoimmune disorder via the same broken mechanism? I'm not clear on how this might apply. Can you explain more please?

    Just a thought, consider this as a classic Greek tragedy where the whole situation is caused by a character flaw, in this case of the researchers, unable, because of arrogance to hear anything from anyone outside of their club who all respect and have the same arrogance.
     
  3. ramakentesh

    ramakentesh Senior Member

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    Most of the work I have seen on folate and B12 has related to abherant enigenetic regulation of transcription of genes. Apparently diets high in one or the other can have effects on the methylation status - that is the attachment of methyl to CpG islands on the promoter regions of genes. these hypermethylated promoters effectively turn of transcription of the particular gene - in cancer where there is reduced transcrption of tumour-supresser genes and perhaps in conditions like POTS where they may be hypermethylation of the norepinephrine transporter gene resulting in loss of transcription and reduced expression of this protein.

    Epigenetics is a pretty new area but they are learning quite quickly what might have effects on this aberrant hypermethylation or in other cases hypomethylation of genes or promoters.

    http://en.wikipedia.org/wiki/Hypermethylation

    QUite often in these texts there is mention of b12 and folate as having potential to alter the normal balance of promoter methylation and transcription:

    Some examples include:

    http://www.ncbi.nlm.nih.gov/pubmed/19755648
    http://www.ncbi.nlm.nih.gov/pubmed/21333513
    http://cebp.aacrjournals.org/content/13/4/511.full
    http://www.rescancer.com/bmc-cancer/6589.html

    Just something I thought you might be interested in. thanks
     
  4. Tia

    Tia Senior Member

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    Thanks for asking, Liquid. :) Unfortunally they're not treating it at all because the doctor says if they treat with tyreostatics, and the bloodworks (dont know the word for it) goes down, I could go hypo instead of as now; hyper, so they won't treat it. Therefore I have to live with all the symptoms.
     
  5. Tia

    Tia Senior Member

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    Did you do anything special to get where you ae now or did the body itself fix it? Sry if you already told, I don't have the energy to read it all. :oops:
     
  6. DaiWelsh

    DaiWelsh

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    I am no expert but my wife has hypothyroidism and that seems odd to me; IIUC hypothyroidism while it causes extreme exhaustion/sluggishness is not life threatening (at least directly) while hyperthyroidism is potentially life threatening. As I say, no expert, but fwiw that is my understanding...
     
  7. lansbergen

    lansbergen Senior Member

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    I take levamisole. I try not to overdo and when possible I avoid places with high infection pressure.
     
  8. Tia

    Tia Senior Member

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    Yeah, she's hypo, I'm the opposite: hyper. But my doctor told me that hypo can be lifethreatening because the heart can beat so slow that it eventually stops..something like that, if left untreated.
     
  9. alex3619

    alex3619 Senior Member

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    fla likes this.
  10. Dolphin

    Dolphin Senior Member

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  11. Vitalic

    Vitalic Senior Member

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    That seemed slightly more emotive than their previous responses. While I enjoyed seeing them stick it to a BSP advocate, at the same time I'm getting flashbacks of Judy Mikovits passionately defending any criticism of the Science paper, and then the patents that have already been declared before adequate replication/validation has been performed, but I suspect that is common practice when potential discoveries are made. I just don't want this to go the same way as XMRV...

    Honestly though, to look at the clinical responses in these patients and put it down to cognitive processes is absurd and exposes how deeply entrenched their psychiatric dogmas are. The most telling feature of this study for me was the two people in the control group who responded positively were the only two who met Oxford/Fukuda but not Canadian consensus criteria, which quite clearly highlights the division that needs to be made between chronic fatigue and ME.
     
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  12. Snow Leopard

    Snow Leopard Hibernating

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    The reality is that the results of this study don't much matter in the long run. They are now doing a larger study, from what I have seen they are top notch researchers and are taking all of the criticisms on board.
     
  13. Murph

    Murph :)

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    Fluge and Mella are collecting the last data in their Phase III trial this month!

    It's a very long time since their very first patient mysteriously got better after b-cell depletion (via methotrextae) way back in 2004.

    Screen Shot 2017-09-14 at 10.45.20 PM.png

    I can't wait for the Phase III paper to come out! But I expect another 12 months or so is likely. Research really does take lifetimes.

    I have nothing but respect for scientists who work so hard, for so long, without even knowing if they're really finding the way forward or just ruling out dead ends.
     
  14. Freddd

    Freddd Senior Member

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    Well, very interesting. Thankyou. I am going to hypothesize as to why the CFS may have let up for a while. The following is conjecture. Consider what methotrexate does. It stops some cells from forming. Decreasing the quantity of cells being made decreases the demands on nutrients. Decreasing quantity of cells decreases deficiencies caused by cell making demand on nutrients, it decreases refeeding syndrome. All the symptoms of CFS that I know of can be caused by refeeding syndrome, in a very complex way. It makes a lot of sense that in reducing nutrient need refeeding syndrome is decreased. Remember, this is all conjecture. I have cured myself of FMS, CFS, CHF, IBS, MCS, Asthma and some others by treating them as refeeding syndrome in a very complicated pattern of deficiencies and interdependencies.
     
  15. perrier

    perrier Senior Member

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    Dear Freddd

    Shouldn't you have an audience with Dr Davis? If you have found ways to cure yourself, it's important to meet with Dr Davis and his team.
    Thank you.
     
  16. Freddd

    Freddd Senior Member

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    I have worked with several Dr Davis's through the decades in the group health care field. I also reported one for insurance fraud for my daughter's claims. So as none of them ever mentioned CFS to me, I have no idea what Dr Davis you are speaking of. I would certainly be willing to speak with Dr Davis and team on this subject. I'm sure it would be very interesting. Recognizing it now as "refeeding syndrome" has taken me since 1978 making sense of what was going on. However, "refeeding syndrome" was mentioned indirectly in one of the first relevant papers I read long before they ever thought of CFS or ME or any of the rest of the set of possible diagnoses from the universe of these symptoms. So let's do it.
     
  17. Murph

    Murph :)

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    It's an interesting hypothesis. Are b-cells numerous enough, or do they constitute enough of a human's weight that not making them would make a material difference to nutrient availability? I am not sure of the answer to this but I suspect they are relatively low bulk. I probably lean to an answer that involves some sort of antibody or signalling molecule that b cells produce, perhaps in concert with t cells.

    That said, my own experience with whey supplementation (alongside a lot of vitamins) suggests adding nutrients can help a LOT with PEM. I implicate bloodstream nutrient deficiencies in the illness, but I'm not sure ceasing making b cells is enough to prevent that.
     
  18. perrier

    perrier Senior Member

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    I mean Dr Ron Davis, who has a team at Stanford looking into CFS. HIs wife Janet Dafoe is on the board here of PR. Her posting name is rose49 if I'm not mistaken. Please try to reach out to them. Other folks here can help you reach Dr Davis. Jaime also works with Dr Davis. Please help.
     
  19. leela

    leela Slow But Hopeful

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    Freddd has a rare genetic disease most of don't have, so what works for him might not work for everyone else.
     
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  20. Freddd

    Freddd Senior Member

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    Hi Murph,

    According to the American College of Rheumatology, methotrexate is one of the most commonly used drugs to treat RA. However, it can decrease the levels of an important vitamin in your body called folate. This leads to a side effect of methotrexate called folate deficiency.Jul 7, 2016
    Methotrexate and folic acid - Healthline
    www.healthline.com/health/rheumatoid-arthritis/folic-acid-for-methotrexate-side-effects

    I think you have misunderstood me. Methotrexate is an anti folic. It shuts parts of cell making that depend on having l-methylfolate. This decrease of cell formation decreases demand on nutrients needed to make cells. This has nothing to do with signalling molecules. It induces a ordinary folate deficiency which decreases cell formation which then decreases the need for whatever is the nutrient(s) deficiencies causing the most deficiency symptoms. As folate deficiencies can shut down essentially all kinds of cell reproduction, divided in at least 8 or more compartments some compartments can be healing and some in deficiency caused shutdown makes so much look contradictory. There are many specifically different forms of paradoxical appearing folate deficiency

    We are talking about CFS symptoms decrease, not RA. The CFS symptoms match up very well and responds well to the matched up refeeding syndrome symptoms.

    Methotrexate being an anti-folate has absolutely nothing to do the MTHFR polymorphisms that causes my inability to utilize folic acid or folinic acid or vegetable folates. Methyl Trap manifesting with extreme folate deficiency symptoms but caused by a lack of MeCbl at the moment it is needed, causes widespread body and joint inflammation, hyper responses and at lease some autoimmune diseases.
     

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