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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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GcMAF trial

Discussion in 'Active Clinical Studies' started by Jenny, Jun 1, 2010.

  1. Wasbeer

    Wasbeer

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    Hello all,

    when I mailed for information on the trials (I live in The Netherlands and will hopefully find out within a week if I'm XMRV positive), I got this rather peculiar answer. Don't really know what to make of it:

    We only had one possible CFS/possible XMRV patient and she was so unreliable we can't regard the data as useful.


    She was on a couch sleeping, waiting to die. She took our gcmaf, and is now leading a full active life, though not fully cured, and her own immune system isn't making gcmaf.


    She believes it hasn't helped her, when its obviously transformed her life.


    So we are not in a position to recommend GcMAF to you.
  2. Frickly

    Frickly Senior Member

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    That is very strange. It sounds like they are saying that it helped this person, even transformed her life, but she has some psychiatric issues, therefore, they will not recommend this product to those with ME/CFS???
  3. Carla-nl

    Carla-nl Veteran by now

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    to me it sounds more like this Noakes person has no idea what our illness entails. in addition, there are NO good reports what so ever from his product. HIV viral loads going up, cancers going awol. Dont think their product will be of any benefit to us. Have spoken to some patients who used it, incl. the patient mentioned above and an xmrv positive patient. no results. the person he spoke about is certainly not leading a full active life and the stuff has not 'transformed' her life at all. David Noakes is so bloody conviced of his own ego that he denies his product is not functional. He tells everyone how great their stuff is for cancer and hiv while in fact most patients go sicker, some have died.

    I didn't want to drag all this out, but i hope, honest to goodness that no one is planning on ordering his stuff.

    Carla
  4. leela

    leela Slow But Hopeful

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    The big tip-off to me was someone who could or would refer to a customer/patient in such a way. It is not only unprofessional, but discourteous to say the least. To then make the proclamation that it had transformed her life when the patient herself was reporting differently....it would seem it is the seller who is the one with psychological problems! Finally, the lack of logic in the step from "it transformed her life" to "I cannot recommend it to you" further convinces me this person is not on the up-and-up.
  5. Carla-nl

    Carla-nl Veteran by now

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    No, he's not Leela. He indeed has some mental issues (yes, i've spoken with him). He has no respect for patients whichever illness they might have and is just doing this to make some money and to get his face on national TV with the miracle clure against cancer. CFS patients are of no interest to ihim. He even denied the patient in question above her further treatment after he found out cancer was not her main issue. WHich it would have been soon. She has cervical cancer, but appareantly that's not bad enough either. He treated her crap. She did a lot of work for him, then he did a two-faced turn and became a nasty man when she could not submit a labreport she was getting better. Well, she wasn't. Because she had 'mysterious illness' and couldn't get him the labreports he denied her the rest of the treatment. He had given her some vials for free in return for some work she had done for him and he turned around and told the world she had stolen them.....

    since he started, 4 team members have left. he's still advocating "they" have a 5 man team, nah, he's flying solo without any medical training. He's a loaded shotgun with a mind of it's own.

    2 CFS docs will start trials with gcmaf from another source soon, possibly also with the yamamoto version. Check out our knowledgebase if you want to learn more about gcmaf: www.diagnosesupport.com/info

    If you want YOUR doc to start a trial with it, let them contact this lab: www.bgli.nl

    Hugs
    C.
  6. Frickly

    Frickly Senior Member

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    Thanks for clearing that up Carla.
  7. redo

    redo Senior Member

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    If this is to be "next big thing", does anyone know why big pharma isn't involved?
  8. moonwalker

    moonwalker

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    I very much doubt big pharma is looking for a cure for cancer or aids. These deseases are too profitable for them.
  9. acer2000

    acer2000 Senior Member

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    I'd be interested in hearing the results of the yamamoto version. Does anyone know for sure if someone is going to do a trial with it?
  10. moonwalker

    moonwalker

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    I think deMeirleir tested Yamamoto's version already.
  11. taniaaust1

    taniaaust1 Senior Member

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    Wow, what dramas.... shows how important it is to properly check into things first.
  12. mojoey

    mojoey Senior Member

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    Gc PROTEIN-DERIVED MACROPHAGE ACTIVATING FACTOR (GcMAF) STIMULATES
    ACTIVATION AND PROLIFERATION OF HUMAN CIRCULATING MONOCYTES
    M. Ruggiero*, S. Pacini**, N. Yamamoto
    *Department of Experimental Pathology and Oncology, University of Firenze, Italy
    **Department of Anatomy, Histology and Forensic Medicine, University of Firenze, Italy
    Division of Molecular Immunology and Immunotherapy, Socrates Institute for Therapeutic Immunology, Philadelphia, PA, USA
    THPE0051
    Background. Vitamin D binding protein-macrophage activating factor (GcMAF) is a powerful stimulator of the immune system. Its effects were studied in conditions
    where macrophage/monocyte function is deficient, from HIV infection to cancer (Transl Oncol 1:65-72, 2008; J Med Virol 81:16-26, 2009), whereas the effects on
    monocytes from healthy subjects have not been studied. Thus, here we report the results obtained challenging human monocytes from healthy subjects with GcMAF:
    we demonstrate that the individual degree of responsiveness is dependent on vitamin D receptor (VDR) gene polymorphisms. In addition, since the signal transduction
    pathway of GcMAF is not fully understood, we studied the effects of GcMAF on the formation of intracellular cAMP. Finally, we studied the effects of GcMAF on normal
    and cancer cell-induced angiogenesis in the chick embryo chorioallantoic membrane (CAM) assay.
    Materials and Methods. GcMAF was prepared by Prof. N. Yamamoto. Peripheral blood monocytes were isolated from healthy subjects using Ficoll-Paque gradient
    centrifugation. 100oeL of cells from donors harbouring different VDR polymorphisms (identified by BsmI and FokI restriction enzymes; see Adv Chronic Kidney Dis
    15:186-90, 2008) were cultured with GcMAF for different time intervals (30 min - 96 h). Each condition was replicated in quadruplicate and each subject served as
    internal control. Cell proliferation and viability were assessed by the cellular reduction of tetrazolium salts to colored formazans and measured as optical density
    (Leuk Lymph 44:1957-62, 2003). cAMP was measured using the Cayman Chemical cAMP assay. CAM assay was performed as described in J Environ Pathol Toxicol
    Oncol 28:85-8, 2009.
    Results. Normal murine and human monocytes, incubated with 10 pg GcMAF/ml for 30 min and cultured for 3-6 h, were highly activated and produced 30-fold
    increased superoxide generation (Table 1).
    In fact, subjects harbouring homozygous “bb/FF” genotypes showed the highest response and 100 pg GcMAF/ml stimulated monocyte proliferation to an extent
    comparable to that achieved by the highest concentration of lipopolysaccharide (1 μg/ml), taken as positive control. Heterozygous subjects (“Bb/Ff”) showed a smaller,
    but still significant, response, whereas “BB/ff” homozygous did not respond.
    In subjects harbouring “bb/FF” genotypes, GcMAF sustained cell viability for about 98 h
    whereas un-stimulated cells were no longer viable after 48 h, as if, in those subjects, GcMAF had rescued monocytes from apoptosis
    (Cell Death Dis 1, e30; doi:10.1038/cddis.2010.8, 2010).
    In preliminary experiments with healthy donors, however, we had noticed that individual responses
    to GcMAF significantly varied. Therefore, donors were selected for VDR genotypes and we
    observed that the “b” and “F” alleles of the VDR gene were associated with the highest responses
    in terms of cAMP formation and proliferation (Tables 2 and 3).
    Chronic HIV infection is associated with deregulated angiogenesis possibly resulting in some of the pathological processes that occur in AIDS patients
    (Angiogenesis 5:141-51, 2002). In the past, it was demonstrated that GcMAF inhibited growth factor-induced cell proliferation, chemotaxis, and tube formation in vitro
    by using cultured endothelial cells and in vivo by using a mouse cornea micropocket assay (J Natl Cancer Inst 94:1311-19, 2002).
    Its effects on CAM assay (i.e. on an entire developing embryo), however, had not been studied. Table 4, shows
    that 1 ng GcMAF/ml (i.e. a concentration 10-fold higher than that required to stimulate monocytes) completely
    inhibited the angiogenesis induced by prostaglandin E2 or by a human breast cancer cell line, MCF-7.
    GcMAF alone did not modify basal angiogenesis or chick embryo viability and development.
    Acknowledgements: this study was subsidized by grants from the University of Firenze to M.R. and S.P.
    Author for correspondence: Prof. Marco Ruggiero, MD, PhD: marco.ruggiero@unifi.it
    Monocytes activated with 10-100 pg GcMAF/ml developed a large amount of Fc-receptors as
    well as significant variation of receptors that recognize IgG-bound and unbound HIV virions.
    Thus, monocyes/macrophages activated by GcMAF preferentially phagocytize IgG-bound HIV
    virions.
    Thus, monocyes/macrophages activated by GcMAF preferentially phagocytize IgG-bound HIV
    virions.
    Figure 1
    Discussion. These results elucidate the cellular and molecular mechanisms through which stimulation of the immune system leads to eradication of HIV
    (J Med Virol 81:16-26, 2009; Figs 1, 2 and 3). In fact, we demonstrate that GcMAF has a potent mitogenic activity in vitro and these data are consistent with the
    observation that intravenous administration of GcMAF increased the systemic cell counts of the activated macrophages to >200-fold. In addition, we demonstrate
    for the first time that the response of human monocytes to GcMAF is dependent on VDR gene polymorphisms.
    It is worth noting that the alleles “b” and “F” are also
    associated with the highest sensitivity to vitamin D; a convergence of the vitamin D and GcMAF signalling pathways can thus be hypothesized. Thus, domain I of
    GcMAF complexes with vitamin D and then binds to monocytes. However, gene-cloned domain III alone fully activates monocytes in a manner identical to entire
    GcMAF. Whatever the case, these results can prove instrumental in identifying those HIV-positive subjects that could benefit the most from GcMAF treatment.
    Figure 2 Figure 3
  13. Mala

    Mala

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    Are You sure that the lab you are reffering to arent the same persons as on the noaks site? The website seems to be a almost a carboncopy.
  14. mojoey

    mojoey Senior Member

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    Hey Mala,

    I believe Carla is on vacation for the next few days so I"ll just try to fill in with I know. Although some parts of the sites are similar, it is only because there has been a slight overlap of personnel between the two organizations, mainly on the tech/administrative side. I can confirm 100% that the lab that David Noakes is using is NOT bgli.
  15. Mala

    Mala

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    Hi m0joey,
    Ive had a conversation with Noakes today. He describes in detail the process with this girl who was their first patient. She was claiming she had cancer in order to get free GcMaf. Her true illness was ME/CFS. He does not claim that GcMaf is a cure. Without doubt though many reports of people getting their life back on GcMaf can not be neglected. The price of GcMaf from Noakes is not so bad. They charge appr 900 dollars for 6 weeks of treatment. Why not Noakes? I do admit he is a bit short in his answers though. The reports of people getting low CD4 counts after GcMaf is of course a worry. On does not wish to worsen things. Comment anybody?
  16. mojoey

    mojoey Senior Member

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    I think you answered your own question: patients got lower CD4 counts after taking Noakes' gcmaf. As with anything else, don't let price dictate your choices. A product can be a great value at $10,000 and a terrible value at $1.00; it all depends on the worth of the underlying products.
  17. accaivu2

    accaivu2

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    italia
    [QUOTE = Mala ; 109.523 ] m0joey Ciao,
    Ho avuto una conversazione con Noakes oggi. Egli descrive in dettaglio il processo con questa ragazza che era il loro primo paziente. Era sostenendo che aveva il cancro al fine di ottenere GcMAF libero. La sua malattia era vero ME / CFS. Egli non afferma che GcMAF una cura . Senza dubbio, anche se molti rapporti delle persone ottenere la loro vita indietro GcMAF non pu essere trascurato. Il prezzo di GcMAF da Noakes non cos male. Si carica ca 900 dollari per 6 settimane di trattamento. Perch non Noakes ? Ammetto che un po ' in breve le sue risposte per. Le relazioni di gente che si bassa conta CD4 dopo GcMAF ovviamente una preoccupazione. Il non vuole peggiorare le cose. Commento qualcuno? [/ QUOTE]
    *
    Io sono hiv + .
    Ho comprato un Noakes MAF GC. Un disastro. Il mio CD4 diminuito . e cresciuto il mio CD8 . NON BUONA ! La mia carica virale aumentata. Non va bene. Ho interrotto la terapia MAF GC. Ho paura. Noakes del personale vi un solo medico che d risposte sulla copia hiv wikipedia.
    Noakes onesto ma penso STAFF NON HA .
    Il suo maf gc non quello di Yamamoto. Non credo che questione di prezzo . NO. Il trattamento pu costare poco e bene . Ma il MAF CG ha diversi isotopi . Seguo il dibattito qui, ma non ho capito nulla di quello che successo tra Noakes e Christel .
    Cosa successo? Troppo tanti soprannomi diversi e strane coincidenze .
    Io aspetto . Augh
  18. leela

    leela Slow But Hopeful

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    I still say, based on the tone and bizarreness of the Noakes email posted at the beginning of this thread,
    which was in my opinion unprofessional and inconsiderate, I would not trust such a person
    for serious untested health treatment. I would seek a person with a different demeanor and respect for his clients.
    But that's just me.
  19. lpgautogas

    lpgautogas

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    Nice post... interesting ! [​IMG]
  20. Cort

    Cort Phoenix Rising Founder

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    What exactly is GcMAF made of? Does anyone know?

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