Thoughts on Viral Conference Baltimore MD

Discussion in 'Fibromyalgia Main Forum' started by consuegra, Jun 24, 2008.

  1. consuegra

    consuegra New Member

    The experience at these conferences is quite strange and disconcerting. I have been to a number of them, and they have their similarities. Many of the presentations are quite abstract. One can listen to a twenty minute lecture and not get a clue as to its relevance to this disease – this CFS/ME that one knows quite “close up” – too close up. Many of the scientists are “out there” -living in their own worlds. They come from Japan, Italy, Canada, Australia, you name it. Meanwhile there are the practitioners, those on the front lines -those who see patients who can walk into their offices. Additionally there are a few patient advocates, like myself, and, most admirably, a few patients. Most of the patient population is unrepresented at this conference; they are unable to hear first hand this information that is so relevant to them. Finally, there is a large body of “unrepresented patients” those who are housebound or bedbound. As usual they are completely disconnected. I think even the sympathetic doctors forget about them, thinking too often that this is an ambulatory disease. By and large this is a 19th century disease, and needs to be treated by 19th century practitioners. How many doctors today are willing do a home visit?

    What is very strange is the feeling that someone like Dr. Montoya does not know a whole lot about CFS - except what he sees in his office. He, and others, are willing to dose these possibly toxic drugs seemingly without paying much attention to the known multiplicity of this disease. He checks viral antibodies, but what about dysbiosis? One can only surmise that if he knew a bit more about the illness, and did a bit more support for his patients, he would get much better results. I admire Dr. Montoya very much and believe that Valcyte and other antivirals are going to be helpful in CFS/ME – but I object to using antivirals as a sledgehammer - unless it is done as Peterson does it - with spinal taps and hard information.


  2. sascha

    sascha Member

    and all the information you shared. it is very appreciated.

  3. Lichu3

    Lichu3 New Member

    He's not hesitant about saying he is new to this area. As a former scientist, I understand Montoya's take on conservatively managing people except for going out on a limb with the antivirals.

    Research is different from the clinic. Clinicians can try different things at once to see what works. If researchers did this, they wouldn't be able to delineate what treatment is causing improvement or if lack of improvement is due to side effects, interactions among multiple treatments, etc. It gets confusing.

    Negative spinal taps aren't indicative of NO infection-- there's a section on this in the HHV-6 website. I also respect Dr. Peterson -- if he knew of good biomarkers available, I trust that he would bring that information to the table.

    Montoya's also not working in a bubble -- I know from talking to him that he talks to other clinicians/ researchers.

    I don't agree with all of Montoya's ideas but I think he gets a lot of flack from all directions. Bottom line is that folks who undertake Valcyte now need to understand thoroughly (on both an intellectual and emotional level) that this is an EXPERIMENTAL treatment and make up their own minds.

    If one chooses to do other therapies at the same time, one also needs to accept the risk that Valcyte may not work as well or unknown side effects may occur.

  4. waltz

    waltz New Member

    I agree with you. They are overly enthusiastic about giving toxic antivirals for long periods of time. Dr. Montoya tells me that is the only option available. I don't know what to do when he says something like that because I know it's not true, yet if I say anything it would probably sound disrespectful. I also agree that it doesn't seem like Dr. Montoya really knows that much about CFS and wonder if he has done his due diligence.

    Ie. I once mentioned Dr. Chia's research and then he had me tested for an enterovirus panel. Er... the whole point of Dr. Chia's research was that he couldn't test it from the blood, and had to do stomach biopsies.

    And like you said, he dismisses things like dysbiosis and that diet could affect things. I also feel that he ignores the symptoms other than fatigue and cognitive symptoms, such as the pain and high comorbidity of fibromyalgia.
  5. ladybugmandy

    ladybugmandy Member

    i agree. many patients are likely not getting the kind of through investigations they need before being put on antivirals.

    sadly, it is up to the patient to do most of the work. i was fortunate enough to be able to see dr. galland - a gut specialist - to rule out yeast and gut dysbiosis. he tested me for lyme at Igenex and seemed objective and honest. i had the RNase L test...and was able to make what i think is a reasonable decision to take antivirals.

    we seem to be either stuck with doctors who are biased and want to push their own theories or those who do not know anything about the illness.

  6. moreinfoplease

    moreinfoplease New Member

    "we seem to be either stuck with doctors who are biased and want to push their own theories or those who do not know anything about the illness."

    And it is hard to do it yourself when you are ill and you haven't gone through medical school.

    And then of course even if you get past that, you can't order lab tests on your own.
  7. ladybugmandy

    ladybugmandy Member

    since i was paying out of pocket for everything, i got my GP to sign off on all the lab tests. he said "i don't think you need these but it's your money".