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FDA Drug Development Meeting for ME

Discussion in 'Action Alerts and Advocacy' started by energyoverload, Mar 11, 2013.

  1. energyoverload

    energyoverload

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    London
    Hey,

    The upcoming FDA drug development meeting could be our greatest chance to start to bring about a signficant change to the way this disease is percieved by the medical community and public. If a treatment was actually approved for this disease it would likely start to help give people their lives back.

    It seems that the problem is - these interventions that are popular such as GCMAF, Ampligen, Valcyte and Rituximab only work in certain groups of patients and no one seems to be able to classify likely responders, yet. So of you all who have tried treatments did any of you take glutamate & or NMDA receptor modulating drugs for relief when symptoms get completely unbearable? I say this because I have found it very hard to find relief from these crippling symptoms other than on drugs such as Flupirtine (anti-epileptic), Riluzole (ALS/Lou-Gehrigs), Klonopin, Memantine (Alzheimer's), Pregabalin/Lyrica & Gabapentin. I have rotated these drugs over the years to help take the edge off and improve my functioning somewhat - granted they are not a cure and you can build up tolerance over time it seems. The only other thing that signficantly helps me is intravenous Glutathione or Transdermal but NOT oral N-Acetyl Cysteine (which acts as glutamate modulator as well I believe by competing 1:1 with glutamate )

    However, companies such as Hemispherx don't seem to be able to run a clinical trial too well - as we saw at the last FDA meeting and they are a small company with few resources. I wonder whether stimulating interest in a new class of pharmaceuticals called metabotropic glutamate receptor modulators (mGluR5 inhibitors) as are being trialled in Fragile X Syndrome (form of Autism) could provide good benefit with fewer side effects than current drugs and in addition have less development of tolerance. I just think we need something URGENTLY to help the greatest number of people that for example a General Physician could prescribe and look up in their formulary... because my GP is absolutely hopeless - unless it's written in his little book he is clueless! I know this wouldn't be the perfect drug and doesn't modulate the immune system but all disease need to start somewhere and we are NOT even on the MAP!!! This would put us on there and improve the status of this illness as a REAL Neuroimmune disease!

    Interestingly - Glutamate inhibitors can actually reduce development of tolerance to Morphine and other medications!

    http://en.wikipedia.org/wiki/Metabotropic_glutamate_receptor

    Energy

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