2007 Montoya/Roche Valcyte Study Presentation Date?

Discussion in 'Fibromyalgia Main Forum' started by aftermath, Dec 31, 2007.

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  1. aftermath

    aftermath New Member

    Has anyone heard rumors as to when Dr. Montoya is due to publicly present the finding of his most recent study on the use of Valcyte in the treatment of ME/CFS?

    I had a doctor I visited recently tell me that Dr. Montoya would be presenting in January of 2008.

    Has anyone else heard similar rumors?
  2. Lichu3

    Lichu3 New Member

    January is way too early for the results. Cat003 is in the study and just stopped Valcyte a few weeks ago; Clo1 is also in the study and won't be stopping for another week. There are others, I understand, who won't be done for a while.

    Cat003 has posted elsewhere on this site that subjects will be followed for a couple months after the study and the researchers themselves won't know who is on med vs. placebo during this time.

    There also has to be time to analyze the data.

    The HHV-6 Foundation conference for 2007 was in May but this year was moved to June. Since initial results were first presented in that forum, I suspect the earliest Montoya might release his results would be there.
  3. clo1

    clo1 New Member

    i think it may take longer than that, because when the last trial participant is done with this phase of the trial (sometime in late jan/early feb), stanford will spend 3 months interpreting the data...then, if valcyte has proven to be effective for the non-placebo group, the placebo group will be given the medication for 6 months with all of the necessary follow-up and labs to monitor for safety...so that's a little over 9 more months...then i think they will probably publish the results sometime within a few months after that...maybe december '08?? maybe a little sooner or later...this is my best estimate given what i know now...cat and i will no doubt keep you posted as we hear updates...best, clo
    [This Message was Edited on 12/31/2007]
  4. aftermath

    aftermath New Member

    Thanks for this info.

    I saw two docs in my area during the last two weeks of Dec. Both were nice and very experienced with ME/CFS, but one was a lot more familar with the aggressive treatments (antiviral, antibiotics) than the other.

    It was the first one--the less experienced one--that gave me the info that Montoya was apparently presenting in January.

    I will be going with the 2nd one (Dr. Levine) who really seemed up on everything and experienced in agressive treatment when warranted.

    I can't wait for all of my labs to come back. I've been sick 13 years (very sudden onset with a cold during a high stress period in my life), and she is the first doctor that ordered bloodwork beyond the very basics (I counted nine tubes being drawn).

    As you all know, it's tough for anyone with this illness to be optimistic. Still, I really hope that we find something.

    [This Message was Edited on 12/31/2007]
  5. ladybugmandy

    ladybugmandy Member

    hi all. i think siberesther mentioned montoya would be giving an update in january ..but i could be wrong.

    aftermath.....you should read my posts re: levine....i would suggest dr. enlander.....but they do say levine is brilliant..its her bedside manner i could not stand...

    good luck

  6. aftermath

    aftermath New Member

    <blockquote>aftermath.....you should read my posts re: levine....i would suggest dr. enlander.....but they do say levine is brilliant..its her bedside manner i could not stand...</blockquote>

    Sue, I’ve read a lot of posts here describing negative experiences with Dr. Levine and her bedside manner.
    Most center around the fact that <b>she tells people that there is next to no chance of a full recovery after being sick for more than a couple of years</b>. I was told this myself.

    This is something that a lot of people don’t want to hear, including myself. Still, <b>it is the harsh truth as of 2008</b>. It may very well change in the future, but for right now it’s the truth.

    The fact is that this illness is only just finally getting recognized. We still need to identify the cause(s) of it and then come up with treatments. AIDS has been recognized and a cause pinpointed since the 1980s—and still, there is no cure or vaccine. This is with a current US govt research budget of 3 billion a year! ME/CFS research receives… 4 million/yr.

    It's going to be a long road, although there is certainly cause for some optimism (at least for one subset) if Dr. Montoya's 2007 study pans out.

    We all have different personalities. Personally, I get along best with straight shooters who “tell it how it is,” no matter how ugly the truth is.

    The one thing that I cannot stand is people who project false hope. I’ve dealt with a lot of practitioners that have certainly offered it, with vitamins, diets, neurofeedback, etc. I’ve spent a lot of money and gotten nowhere.

    I also cannot stand arrogance. Regrettably, this is a common quality in physicians, especially notable ones. I didn’t detect the slightest hint of that in Dr. Levine. She did not speak down to me, refuse to listen to my ideas, etc.

    Again, if you did not feel comfortable, she was not the doc for you. We all need to find someone who is technically competent and has a personality suiting our own. Scientists, especially the brilliant ones, are naturally skeptical. This certainly turns a lot of people off.

    [This Message was Edited on 01/01/2008]
  7. ladybugmandy

    ladybugmandy Member

    its not that she told me there was no hope...which i admit was news i wasn't prepared for since no one i had seen before thought CFS was even real...its how she said it. she was flippant and condescending. when she gave me a phone appt to give me my results, she snapped at me beause SHE did not have my results handy. she is just very rude in my opinion.

    you are right though....she may have told me the harsh truth about possibility of recovery.

    good luck:)
  8. winsomme

    winsomme New Member

    i don't agree that the current state of CFS is that you have next to no chance of recovery....so someone saying that isn't necessarily being a "straight shooter".

    i have just seen too many recovery stories.

    there are many, many things to look into at this point in time and protocols to try.

    certainly we don't have a handle on CFS at this point and there may be multiple causes that may be also compounded over time by subsequent problems that develop...ie someone starting out with a sub clinical infection which leads to metabolism problems which leads to toxin build up which leads to damage to hormonal pathways...

    that's just an example for the sake of having something to discuss.

    so let's say that someone is in that situation. they now have a low level infection, metabolism problems, toxin build up and hormone imbalances..

    if that person treats any one of those problems and it doesn't help them, is it because that wasn't really a problem to be treated or they needed to treat more of the problems at the same time to actually see the benefit?

    i'm not saying i have any answers, but depending on the person, telling them that there is almost no chance of reocvery is not entirely accurate and could put them in a needlessly scary place.

    just some thoughts.


    PS - i have seen Dr Levine and didn't personally have any problems with her. but the times i have gone to her, i went with very specific things that i wanted her to either test for me or treatments i wanted to try.

    i wasn't looking for her to simply get me better because it is true that there is no one treatment that currently works for everyone.
  9. aftermath

    aftermath New Member

    <blockquote>its how she said it. she was flippant and condescending. when she gave me a phone appt to give me my results, she snapped at me beause SHE did not have my results handy. she is just very rude in my opinion.</blockquote>

    If that happened to me on multiple occasions, I wouldn't be someone's patient for very long either.

    I'm just very happy to have found a real physician that believes in this illness and it willing to order real tests to evaluate it instead of try to sell me an expsensive unproven treatment that is not covered by insurance and turns out not to work anyway.

    I've been down that road WAY TOO MANY TIMES before.

    So many that I'm skeptical of any "recovery stories" that aren't published in peer-reviewed allopathic medicine journals from this point forward.
  10. winsomme

    winsomme New Member

    if we waited for medical journals, CFS research wouldn't be where it is today.

    for the longest time, they wouldn't even accept papers on CFS for review because it was viewed as a "made up" disease...

    and that wasn't even that long ago...patient advocacy has been a huge help in at least getting CFS recognized as a real condition.

    and when i speak of "recovery stories", i am talking about specific people whose process i have followed using different protocols and their experiences with it.

    i have seen them in many different places. lyme forums, mycoplasma forums, chlamydia pneumoniae forums, here, many, many places......

    personally, i think we need to keep an open mind and keep trying to push things forward the best we can.


    PS - i just want to also say that IMO skepticism is a very healthy thing, especially in regards to how we treat our body.

    but i also think that there is a fine line between "skepticism" and "cynicism", and i think that that is maybe the line that ladybug may be saying was crossed for her.

    and again, i have seen Dr Levine and was able to work with her on a few things.
    [This Message was Edited on 01/01/2008]
  11. winsomme

    winsomme New Member

    i think it is also important to point out that not all Doctors agree. especially with a condition like CFS. and that doesn't mean that one Doc is telling you the truth while the other is not. they are giving you their opinion based on their personal experiences and their medical expertise.

    i have been finding this is true with many, many conditions: cancer, heart disease, kidney disease....on and on. the difference is that many of those have more established protocols to treat them.

    but that doesn't mean there is universal agreement in the medical community about what the real story is.

    even with a condition like MS, there is a lot of debate about it's cause as well as its pathology....

    and it is just as healthy to challenge the idea that there is nothing that can help people with CFS as it is to challenge the idea any particular treatment will get you better.

    [This Message was Edited on 01/01/2008]
  12. winsomme

    winsomme New Member

    sorry for all the posts on this, but i just thought of another example.

    low dose naltrexone is a treatment that has been met with a huge amount of skepticism over the years.

    but recently there was a researcher that did a study of it in Crohn's Disease that was at least in the preliminary stages successful.

    and the reason it even got to that point is because people who were taking it based on a theory kept telling everybody that it was working for them.

    so the point that i guess i am making is that sometimes progress is made in less than standard ways.....

    the best example is the people who discovered that ulcers could be caused by a bacteria and gave the bacteria to themselves to prove it....

    who knows where breakthroughs are going to come from with CFS?

    Dr Lerner came upon the herpes virus/heart connection by successfully treating himself first and now these many years later we have the Dr Montoya studies...

    Dr Nicolson came upon mycoplasma because his daughter got sick.

    Dr Marshall came up with his protocol by treating himself..

    Dr Chia started researching because his son got sick, i believe and now he has biposies backing up his theory....

    we just don't know where this thing is going to go at this point.
    [This Message was Edited on 01/01/2008]
  13. ladybugmandy

    ladybugmandy Member

    hi all. i recently read somewhere that some doctors are starting to conclude that MS is a form of CFS.

  14. siebertesther

    siebertesther New Member

    Hi all, I have a question. While I think it is nice to give the placebo people treatment after the study, I think the study ends with the results of them being on placebo and the others being on valcyte. So I think the results will be available after people complete the study and the data are analyzed rather than when the placebo people complete their treatment with valcyte which I think is just a courtesy to them personally. Esther
  15. Lichu3

    Lichu3 New Member

    Clo or Cat can ask directly. I would tend to agree with you that the study would usually end after the 6 month period ends for everyone.

    However, the researchers might not want to publicize results until the initial placebo folks finish Valcyte as there are only 30 folks in the study and the more results they get, the better.

    It would also strengthen the results as they can point to the initial placebo folks who might later respond to Valcyte.

    This is my guess.
  16. Is it not a bit presumptious to tell someone they will never recover when this is not an unidentified illness, it's a group of unidentified illnesses?

    This doctor might be very good, but no one really knows what's really happening here for sure anyway.

    About the MS thing, I know my GP said that in her opinion comparing MS and CFS was inappropriate and is something the MS Society don't like (please don't shoot the messenger). She said in her opinion - she does recognise CFS- that they are quite different.
    [This Message was Edited on 01/02/2008]
  17. clo1

    clo1 New Member

    hi all...i think that the cfs/ms connection comes from the fact that there is now some evidence that HHV-6 may be a causative agent for some MS sufferers...i think there is a lot more posted about that on the HHV-6 foundation website, which i haven't read for awhile...best, clo
  18. aftermath

    aftermath New Member

    <blockquote>Is it not a bit presumptious to tell someone they will never recover when this is not an unidentified illness, it's a group of unidentified illnesses?</blockquote>

    Yes, absolutely. And that's what good science is all about. The scientific method is grounded in skepticism. There is no relationship between things until someone proves one.

    Right now, there is no reason to believe that any of us will recover with a specific treatment until someone shows in a study that it has worked.

    Yes, a precious few prople do recover. Still, 20 years after this illness became news, Dr. Montoya's study is essentialy the first study showing a group of people receving a treatment and recovering. And this was a small study on a specific subset that has yet to be fullly replicated.

    Again, in science, you won't recover until someone shows you will--that's just how science works.
  19. winsomme

    winsomme New Member

    i don't agree that there isn't a connection until someone proves there is one...

    in an abstract sense, the connection was there before it was proved to be there.

    just using the ulcer/bacteria scenario as an example. the H. Pylori bacteria didn't just all of a sudden become the cause of ulcers once it was proven to be the cause.

    and there are more than a few recovery stories out there of people with CFS.

    the question that really is there and is a good one is how much are we willing to try BEFORE there are standardized protocols for treating CFS.

    that is only something each person can answer for themselves and that is why we discuss all the different theories out there so extensively. so that people can get as much info as they can to make decisions about what they want to try and what they don't want to try or what they want to wait and see what happens before they try....

    a huge part of medical science is trying treatments BEFORE they are proven to work. that's what clinical trials are for.

    unfortunately, until recently, CFS was largely not recognized as a real physiological disease, so that process has been left largely to patients and underfunded medical professionals like Dr Lerner , Dr Peterson, Dr Klimas, Dr Nicolson, Dr Berg (hypercoagulation)etc....a lot of LLMDs...

    and people have gotten better going this route. it certainly is not ideal and comes with much trepadation, but it is an option. and personally i like having options and like at least having a resource like this site to discuss all these ideas in a very open way.


  20. winsomme

    winsomme New Member

    just another example is the Dr Brown theories on Rheumatoid Arthritis.

    i'm not even sure how long ago Dr Brown came up with theories and treatment of RH with low dose antibiotics.

    but only recently has this theory begun to be even acknowledged by mainstream medicine, but all those in between years there have been people getting treated with this protocol and getting better.

    and that was well before there was any proven connection.

    that doesn't mean that everybody with RH should go that route, but it is nice to be able to have that option available.

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