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Re: June 23rd
Posted by Robert Christ on 8/16/08

    On 7/13/08, S wrote:
    > Robert,
    >You do make a good point but mold allergies are real and mainstream medicine knows that too. Lyme (not
    >Lymes) is real but it's not well understood,

    No No No
    Mold related illness is not an allergy in any conventional sense, as far as I know, it responds to no known
    medication. As far as I know simple allergy doesn't destroy peoples lives, evict them from their homes, ruin
    them financially, take away their ability to work and social life, cause profound fatigue and other painful,
    impairing highly debilitating symptoms. It's like comparing a slight breeze to a hurricane. Dr's who don't make
    the distinction between the two are unwittingly doing great harm to us. (It's not their fault, they don't
    understand mold related illness, THERE NEEDS TO BE STUDIES THAT REVEAL THIS PHENOMINON of acute mold reactivity.

    >Many times, it's hormonal, bacterial or viral but everyone is lumped together but Fibromyalgia is
    >the champion of all quack conditions,

    But I think for the most part this is speculation we don't really know this because no study has definitively
    pinned down a pathology that can be applied to large masses of the CFS population. My problem with people saying
    this is it may be true, may not. But we come to this junction where were just throwing are hands up in the air
    and doing nothing. From a perspective non snuffer's don't have, I think that this mold connection needs to be
    ruled out first. If I am right and it exit's it needs to be studied, and from this protocols developed that
    would make it easily diagnosed and treated by general practitioners, than whatever is left will be clearly
    delineated and researchers can focus on some other possible causes such as post Lyme. I am dubious of multiple
    causes to these "invisible illnesses" such as post Lyme that fall into the category of CFS. Every time you add
    another one the odds AGAINST it go up exponentially. People put pressure on me to be politically correct and
    keep accusing me of not being open to other things. I will be when something I KNOW of, specifically MRI is
    ruled out. If we knew a certain population was vulnerable to dengue fever we wouldn't say will it could be post
    Lyme or mcs, or some other vague diagnosis until we ruled out dengue fever. And unlike these other syndromes MRI
    is plausible and testable (through studies I've suggested that to date have not been done), it's not impervious
    to scientific investigation like post Lyme seems to be where we can't find any pathogens, or mcs where their is
    no known mechanism or pathogen, or some other kind of pathogen like a virus where we don't have any way of
    testing for because we don't know what we are looking for. Also what you have to consider is viruses usually
    reveal themselves to science, why hasn't this happened if it is indeed a virus? (I still believe their is a good
    possibility for this just posing this question) Look at the similarity's to aids for instance. Aid's suffers are
    vulnerable to all sort's of pathogens, this is what lead researchers to the conclusion it was a virus!!!!

    >If you read the post above, the CFS doctor
    >at Georgetown sounds like a quack too, just a different variety then...

    Agreed

    >The best we can do is find open minded doctors who truly want to help others and not take advantage of the
    >ill, or practice deceptive medicine.

    No, this isn't working, patient's can't keep going to open minded dr's even if their honest and do care, because
    their spending their life savings trying to get a diagnosis that isn't ever going to be made. We need to
    convince these same dr's that no single dr is capable of this and their needs to be studies that go in a
    different direction than what is taking place at Georgetown, or some of the other main stream institutions.

    >Pylori (Dr. Barry Marshall) was laughed at for decades by his peers, then he won the peace prize.

    I use this example every time people imply (almost without fail) I have some type of unshakable belief mold is
    making me sick or phobia of mold and that they are just wasting their time trying to convince me otherwise.

    If anyone is interested in more of my insight into this illness (11 years suffering now, and many anecdotes) and
    what should be done about it read my post's on JREF forum: Specifically how to tailor a study that would revel
    the phenomenon of acute mold reactivity.
    http://forums.randi.org/showthread.php?t=120036
    Or "Skeptics Guide to the universe forum" I targeted this forum because Dr Novella is a neurologist and skeptic
    whom I have a lot of respect for, and host's a podcast of the same name. My thinking is if Dr's just followed
    though on the principles of skepticism it will lead them to the truth. That is all I'm asking for that they do this.
    http://skepchick.org/skepticsguide/index.php/topic,12718.0.html
    Also highly recommend suffers listen to Dr Novella's podcast, or read post's on JREF forums and they will see
    how they are being ruthlessly taken advantage of by opportunistic quacks.

    >I said what's on my mind but I do think your points are valid.

    Thanks for responding to my post!


     
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