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GcMAF trial

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

  1. AlexMac

    AlexMac

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    Just an update on gcmaf

    Hi everyone,

    I don't know if you're already using GCMAF but I suggest that you see a doctor before becoming a lab rat to these people. I know how hard (almost impossible) is to find a doctor that treats/understands M.E. But I wrote an email to these people after Jenny's post on clinical trials. To my surprise they said that there were no clinical trials, that they only had two xmrv + people trying this drug and that I should be a "suitable candidate" (all this by email).

    The person who answered my email, David NOAKES also told me that I could buy it straight away, no prescription needed. They seem to be selling it like "candies". When I asked about my concern about not being followed up by a doctor, David NOAKES told me that "doctors don't know anything" (I agree for some of them, but there are a few researchers out there who "might know" a little bit, right?), that I don't need any prescription to buy it :eek:, that I had to do my own research (well that was why I was contacting the company...) and I even got insulted by him!:confused: Just because I asked about my concerns.

    Please be careful about this. Ask, read what well-known doctors have to say about this. I am as desperate as you are, after having tested positive but please think twice before trusting on any "miracle cures".

    Best wishes.

    Alex

    ps: Here's the emails I sent and the response I got from David Noakes from GcMAf, Is this a professional way of treating queries?????

    After David Noakes sent me a looong email with an extensive explanation on GCMAf, the fact that big pharma and doctors refuse to use this medication, but without saying why doctors would refuse their patients this "miracle cure", how I could get this medication, etc etc... I sent him the following reply :

    From: ALEXANDRA <alex.maclachlan@free.fr>
    Subject: RE: GcMaf
    To: "'David Noakes'" <davidjnoakes@yahoo.co.uk>
    Date: Monday, 21 March, 2011, 17:14

    Ok so basically youre advising to buy a drug for which there were no clinical trials performed. Even if its true what you say, how can I trust this drug, wouldnt I need medical supervision? Has this drug been approved in Europe? You mention cancer and HIV but what about M.E.? No trials are being conducted then? We patients have to pay for a drug, and take the risk of being lab rats ourselves?

    You see I agree with some of the things you say in your mail, but I find it very suspicious to get this message from a yahoo email address, trying to sell a drug, now of course you might be an honest person but I ignore who you are, and whose interests you are defending. In five years Ive seen so many unscrupulous people trying to get advantage from desperate patients, M.E. and fibromyalgia patients. And now with the xMRV I wouldnt be surprised things will even get worse for dirty businesses.

    Is there a doctor I can ask for further information?

    Regards,

    Alexandra Maclachlan

    I got the following answer afterwards:

    De : David Noakes [mailto:davidjnoakes@yahoo.co.uk]
    Envoy : lundi 21 mars 2011 22:29
    : ALEXANDRA
    Objet : RE: GcMaf

    Yes there are, but you need to want to do this, and you clearly don't. You are not a suitable candidate for self administration. If you were, you would already have done your own research, and none of this would be new to you. YOU'RE ACTUALLY AN IDIOT TO ASK THESE QUESTIONS.
    You need to know what you are talking about before you get involved, not afterwards.

    David Noakes.

    Now I don't know you people but I wouldn't trust guys like this one, Does anyone have a similar experience???? Now with XMRV I wouldn't be surprised to see bastards out there selling miracle cures that could even make you worse! This guy is talking about Self administration!!! Patients buying this stuff and administering it themselves!!! please BE AWARE!!
  2. AlexMac

    AlexMac

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  3. muffin

    muffin Senior Member

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    USA!
    Thanks Alex for posting the above info. I too was looking and just about to bite the bullet on this one BUT, with an email like that one and the rest of the info on this product, well, doesn't sound like such a good idea.

    Again, thank you for taking the bulls by the horns and hitting this guy. We so don't need more snake oil salesmen than what our shrinks are already providing for us.
  4. liverock

    liverock Senior Member

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  5. denlander

    denlander

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    Gcmaf

    We are running a tial on GcMaf patient in New York

    regards
    Derek Enlander MD
  6. Frickly

    Frickly Senior Member

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    Dr. Enlander, How would someone get involved in your trial?

  7. Rrrr

    Rrrr Senior Member

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    wonderful, dr. enlander! this is a welcome development. can you tell us what source of GcMAF you decided to use?

  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I think thats great news, I hope you get sufficient funding for this.

    cheers!!!
  9. firefly

    firefly

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    As far as I can tell, Dr. Enlander's GcMaf study is 18 injections over 18 weeks - $5000 total.
    My understanding is that it requires biweekly bloodwork: NK cells, immune panel, some other values.
    His office has all the relevant info. It's possible that this may be a better option if you live in NYC.
  10. Joanee

    Joanee

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    I have been looking at the cost of GcMAF. BGLI sells it at about $150.28 per shot plus plus shipping from the Netherlands.

    I wonder why the Belgium pharmacy www.GcMAF.eu is selling their version of GcMAF for less,
    at $119.40 US dollars a shot which includes shipping.
    you can confirm that by checking their website online at:
    http://www.gcmaf.co.uk/info/index.php?option=com_content&view=article&id=106&Itemid=48
    and they guarantee that on arrival it will be good, active GcMAF.
    Does anyone have any experience with that pharmacy? Thanks, Joanee
  11. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Joanee,

    The cost of GcMAF varies a great deal with the supplier--and I don't think the varying cost reflects the quality of the product. I have not used the UK source, but have obtained GcMAF through Prof. K. De Meirleir in Belgium. He uses neither of these sources (he uses another certified, quality controlled lab) and I pay 35 Euros per 100 ng vial.

    Best wishes,
    Sushi
  12. Andrew

    Andrew Senior Member

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    Is there a list some place of which cancers it's been tested with?

    Also, if Dr. Enlander is able to get it, does that mean we can try it in the U.S.?
  13. karbyjoy

    karbyjoy

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    Hi Joanee! How is GcMAF treating you? How long have you been on it?
    Cheers..
    PS I'm being tested with De Meirleir for xmrv and also genotype response for gcMAF...what evidence do you know of so far that it's working? If it is!!!
    Peace:)
    Kara
  14. maryb

    maryb iherb code TAK122

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    Hi Kara there is a thread for people on GcMAF,(GcMAF for XMRV) many are being treated by KdM.
  15. mojoey

    mojoey Senior Member

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    Please take note that BGLI's gcmaf is not getting through customs at the moment.
  16. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Joey,

    Do you know whether they are sending it back to the Netherlands? What grounds are being used to stop it? What the description of contents is--that they put on the customs declaration?

    This isn't good news and I hope it is quickly resolved.

    Sushi
  17. mojoey

    mojoey Senior Member

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    Unfortunately I don't. I just heard about it from another patient. I suspect contacting BGLI directly would be more helpful since they are making adjustments to get it through again.
  18. safari

    safari

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    The FDA is changing their rules on importation of GcMAF.
    Attempts to get a variance are underway by BGLI.
  19. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Thanks safari,

    Do you have any more information? I was wondering how BGLI had described GcMAF in their customs declaration. Also whether this would affect those bringing GcMAF into the country in their checked luggage. You are allowed to bring 3 months of an experimental drug into the country for your personal use--but then GcMAF has not been classified as a drug.

    Also, I wondered if other companies/doctors who ship GcMAF to their patients are having the same trouble--perhaps BGLI's "description" of GcMAF raised a red flag?

    Sushi
  20. lisann

    lisann

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    OK - this was about to be my next treatment attempt.....
    Would those of you who have been using/ordering this, and apparently having it get sent back (always? sometimes?) recommend even attempting to order it at this point?
    Obviously it's quite expensive, I'd definitely have to sacrifice other things to pay for this - and it would be devastating to have it confiscated/returned at customs. (Seriously - they REALLY have the resources to waste on THIS?? )
    I'd appreciate any info or advice.....
    Thanks in advance.....
    Lisa

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