1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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Can You Come for a Visit? My ME/CFS Says No
My daughter and son-in-law just had a baby last week. We are thrilled. But we won't be able to see the baby or hold her any time soon. We won't be able to take over little gifts or help out with housework or babysitting.
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PHANU Rising II: Dr. Marshall-Gradisnuk Talks on Rituximab, Biomarkers and Chronic Fatigue Syndrome

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Aug 29, 2012.

  1. Cort

    Cort Phoenix Rising Founder

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    Raleigh, NC
    Rich if this is the cause..how effective is the treatment and how much work needs to be done in that area?
     
  2. richvank

    richvank Senior Member

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    Hi, Cort.

    The treatment seems to be pretty effective for correcting the vicious circle mechanism, which I believe is the core of the pathophysiology. It really needs an orthodox clinical trial in order to be taken more seriously by the mainstream medical system, though. The little clinical study that Dr. Nathan and I carried out showed good results, but without placebo control, larger numbers of patients, and other improvements, most of the M.D.s will not take tje treatment very seriously, especially since no prescription drugs are involved.

    Also, the treatment does not directly address the etiologies (root causes), including the infections with various pathogens and the toxins. In addition, various infections and toxins come on board after the onset of the disorder, because the immune system and the detoxication system become dysfunctional as a result of the vicious circle mechanism. So my view is that the place where work needs to be done in order to increase the number of recoveries is in ways of knocking out the infections and supporting the immune system (such as is going on with work on Ampligen, low-dose naltrexone, the various forms of MAF, antivirals, and Retuximab), and also in detoxification of toxins.

    I also think more attention should be given to determining congenital immune deficiencies and congenital deficiencies in the detox system. I suspect that many PWMEs became ill because they were genetically vulnerable to infections or buildup of toxins. We need to better understand what these genetic deficiencie are and how to compensate for them.

    Best regards,

    Rich
     
    Marg likes this.
  3. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    australia (brisbane)
    Hi Rich,

    i think everyone has their specialties like ritux or treating the herpes viruses or yourself with methylation block. I think we are just waiting on someone to be able to bring it all together. I think many of us patients here are trying to do this is some form. As for PHANU i dont think that they are 100% into looking at a treatment, more looking into a diagnostic test for cfs/me.

    cheers!!!
     
  4. Shell

    Shell Senior Member

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    England
    Lilpink - your story is so similar to mine! I became ill during my 4th pregnancy. I went into a good remission for my 5th and relapsed about 3 months after she was born. I went into a short remission during my 6th pregnancy but miscarried and heamorraged (sp?) and then lost the 7th too (had a D&C to avoid another big bleed out). I went into a shorter remsission during my 8th pregnancy but relapsed with a serious chest infection at the end and she arrived earlier than the booked c-section when I had to have an emergency section. Thankfully she was fine. I lost a lot of blood during all 3 c-sections and docs got their knickers in a twist over my low platelets.
    Even though I relapsed before Heleyna was born I found breast feeding helped symptoms (or at least symptoms were not as bad while I fed her) at least for the first 3 or 4 months.

    I had a serious relapse just over 2 years ago, recovered a bit and am now getting progressively worse (my youngest is 5).

    I really hope PHANU find some good solid answers.
     

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