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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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CMX001 TRIALS?

Discussion in 'XMRV Testing, Treatment and Transmission' started by Daffodil, Nov 2, 2011.

  1. Daffodil

    Daffodil Senior Member

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    hi all. i have a question. in cort's article, it is stated that dr. peterson was contacted by chimerix about conducting a trial on CFS patients with the drug cmx001.

    i called chimerix myself about the possibility of my doctor applying for the drug for me, for HHV6. they said NO....they said they are not going to trial it for HHV6..only adenovirus, CMV, HSV, etc. they also said that maybe they should call peterson to stop giving hope to CFS patients that they could try the drug...W T F?!

    now..perhaps all of this just means that patients without CMV will be excluded from any trials... but the drug will still be trialed on CFS patients?

    can anyone find out?

    thanks!
     
  2. mojoey

    mojoey Senior Member

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    That is what they told me every time I've called them. This has nothing to do with Wesseley or being anti-CFS. This is clearly stated on clinicaltrials.gov: "CMV, ADV, HSV, VAVC, VARV or Monkeypox Viruses(s)"

    That Peterson would have access to the drug for other viruses is not surprising, if it happens. Peterson has a track record of making things happen that other doctors are not, whether it's with Vistide or Ampligen. However, if we start throwing statements like anti-CFS around, who knows what type of effect that will have on Chimerix's willingness to accommodate Peterson. If they're only willing to accommodate one doc, that's 100x better in my mind than for no one, as data on the drug will inevitably come from Peterson and his patients.

    Let's keep it classy folks.
     
  3. mojoey

    mojoey Senior Member

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    If they really do want to keep it to Peterson's office, it would make sense for them to issue a statement like that. I'm sure they don't want to get inundated with calls about why other locations are doing the drug for EBV etc since Peterson is, etc etc.

    As for whether a thread will affect their decision, who knows. It's no secret that researchers have been turned off by ME/CFS research due to angry hate mail during the XMRV episode. Whether the hate mail is warranted is not the point. Rather, I think the onus is on us to help preserve their interest in our disease by erring on the side of respectful.
     
    anne_likes_red and taniaaust1 like this.
  4. Daffodil

    Daffodil Senior Member

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    yea that woman is never very nice to me when i call LOL......but rumor has it that peterson might not be the only one trialing the drug for CFS.

    anyway....i suspect you may have to have CMV to try it. i am in the process of trying to find out.
     
  5. mojoey

    mojoey Senior Member

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    Thanks for the sleuthin Daffodil. I've been talking to a few Peterson patients whom were told they'd be able to start the trial soon but so far it's been a slog. I hope they do get off the ground soon... it does sound very promising.
     
  6. Daffodil

    Daffodil Senior Member

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    yes i agree. i will find out..i have a connection...might take some time.
     
  7. m1she11e

    m1she11e Senior Member

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    So, since I have CMV as well as HHV6, would it be worth it for me to see if my doc can get it for me as far as the trials? Where would I even begin?
     
  8. Daffodil

    Daffodil Senior Member

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    m1che11e.....this is a list of the study locations.

    http://clinicaltrials.gov/ct2/show/study/NCT01143181?term=cmx001&rank=3&show_locs=Y#locn

    i am not sure if these places are giving it for CFS per se.....but you can call and ask and just tell them you have active CMV infection.

    other than that, you can try and get an appt. with dr. peterson.

    may i ask...were you the one who recovered on valcyte? i remember you from another message board...

    thanks!

    oops forgot to mention....you can also call chimerix and ask for the person in charge of applying for the drug for compassionate use....and when you speak to them, ask if your doctor can apply for that and see what they say. tell them you have CMV-associated encephalomyelitis or something..not CFS
     
  9. aquariusgirl

    aquariusgirl Senior Member

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    sue... you are a treasure! and you have awesome research skills......you would be an incredible asset to any company.
     
  10. Daffodil

    Daffodil Senior Member

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    awww what a sweet thing to say:) thank you. i needed that today,
    xoxoxox
     
  11. m1she11e

    m1she11e Senior Member

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    Thank you so much for that information!! Going to see Peterson isnt an option but I will certainly persue the other possibilities you gave me.

    I did a short course of Valcyte. I could never even tolerate one pill every couple of days and got sick after the very first one. It took me a LONG time off of Valcyte to recover from only a few weeks of trying to take it. I am taking Famvir now. I just dont think it is able to get into my CNS and I do have neurological symptoms. Also, Famvir definitely is making my hair thin out. My HHV6 titers have come down while on it (no physical improvements though) but CMV has gone up a bit.

    Thanks again!!
    Michelle
     
  12. Rooney

    Rooney

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    I called Chimerix and most of these sites this summer. The problem I had is that it takes a specialty lab report to prove CMV and those are hard to get. I mean Viracor or Wisconsin Viral Research for virus DNA. With regular labs we may show elevated IGG, but no IGM. Then we'd need a doctor to say we have a life-threatening CMV virus. I don't currently have such a doctor.

    While I'm in the line to see Peterson soon I am losing hope that I'd get in the CMX study as he already has so many patients to fill those precious slots. But there's hope, as CMX001 has been fast tracked for, I think, small pox. So the drug may be available for us worldwide sooner than we think.

    Rooney
     
  13. Daffodil

    Daffodil Senior Member

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    rooney....dont you think it will take at least 3 yrs for the drug to come to market? phase 3 can go on for a long time, even if its fast tracked...and then we might need a specific indication to get it ...will insurance companies pay for it for off-label use. if we have to pay ourselves, will it be like $2000 a pill?
     
  14. Charles555nc

    Charles555nc Senior Member

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    Isnt cmx157 the anti retroviral, and cmx 001 a anti dna virus drug? Maybe i remember that wrong.

    When it gets fda approved, any drug is able to be prescribed for a "reasonable use". Just like antiretrovirals for cfs people now, but it will be crazy expensive.
     
  15. Daffodil

    Daffodil Senior Member

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    yes you are correct. cmx157 is only in phase 1....blah
     
  16. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi, what do we know about these viruses except Herpes Simplex and CMV? Are we likely to have any of the others? Are there and updates from Kogelnik or Peterson about trials of CMX001 that we might be eligible for?

    Thanks,
    Sushi
     
    vli likes this.

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