NJ CFS/ME conference?

Discussion in 'Fibromyalgia Main Forum' started by consuegra, Oct 27, 2008.

  1. consuegra

    consuegra New Member

    Did anyone attend the CFS/ME conference in NJ yesterday? I could not make it but would be interested in a report on the lectures.

  2. bigmama2

    bigmama2 New Member

    hi! i went to it. it was good, and interesting. i will do a brief brief summary here.

    dr chia- many cfs patients (82%) have a type of virus called an enterovirus in their gut/intestines, compared to only 20% of healthy controls, according to his study. dr chia said he hopes antiviral drugs to treat this type of virus will be developed. he is also looking into treating it with chinese herbs.

    dr levine- her presentation focused on another type of virus called bornavirus that some cfs patients have. researchers in germany found a way to accurately test for this thru the blood. (before it was tested in brain biopsies- ewww!) the german researchers think that bornavirus can cause depression (major and bipolar). a medicine called amantadine (an antiviral) can be used to treat this virus. they are studing the results. dr levine has treated some cfs patients w amantadine- some had improvement, some did not.

    kenneth friedman- he is very involved in cfs advocacy. in a nut shell-- he said the US govt NIH, CDC, etc is allocating less and less money to cfs research. this is a HUGE PROBLEM for us!!! he said every cfs patient and their loved ones should join a cfs organization because there is strength in numbers. examples are cfids association of america, or the international cfids association, or a group called PANDORA (they advocate for all neuro endo immune disorders- cfs, fibro, gulf war syndrome and mult chem sensitivities.)

    patricia fennell- gave a presentation about how the everyone (patients, drs, govt, and regular people) views chronic illnesses. she also discussed the 4 phases that chronically ill patients go thru. more info on her website. she has also written a book (or two?) about alll this.

    hope you find this interesting
  3. SpecialK82

    SpecialK82 New Member

    thanks so much for your report! I'm always so thankful when someone has the energy to attend and report on a conference.

    Very interesting about the enterovirus affecting 82% of cfs patients. That makes alot of sense given that alot of us have so many gut problems. I certainly hope they can develop an antiviral for us.

    I know that the CFIDS association of America lobbys Washington. If we can get some real research dollars into this fight it would make a huge difference. We just need to support one of these organizations that will get our voices heard!

    Thanks again,