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Article: 2012 - the Year Ahead Pt II: ME/CFS Efforts Expand

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Feb 22, 2012.

  1. Phoenix Rising Team

    Phoenix Rising Team

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  2. Astrocyte

    Astrocyte

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    Thanks for this great summary of 2012 research, Cort. Nice to see lots of intriguing work going on. 'Knowledge Base to Biomarker' sounds fascinating. Do you know any more about it?

    Glad to see more EEG research too (as well as all the other stuff of course).
  3. Merry

    Merry Senior Member

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    This gives me hope for the community. Thanks, Cort.
  4. Nielk

    Nielk

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    Yes, great article again and very hopeful.
    What about Dr. Benjamin Natelson studies of the brain of ME/CFS patients at his Pain and Fatigue Center in Beth Israel Medical Center in NYC?
  5. Cort

    Cort Phoenix Rising Founder

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    Thanks Astrocyte. I'm going to try and find out more about the Knowledge Base To Biomarker study with Dr. Vernon. That is intriguing is it not? This is the kind of 'out of the box' cutting edge stuff that Dr. Vernon loves I think.
  6. Cort

    Cort Phoenix Rising Founder

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    Thanks Merry, the CAA is going to announce their grants tomorrow - so we should have 4 or 5 more research studies to look at tomorrow :). There's something about ME/CFS experts funding ME/CFS research that adds an extra edge to me - you don't get the hostile review panels who are quirky about CFS - you just get people who dearly want to succeed. ;)
  7. Cort

    Cort Phoenix Rising Founder

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    Missed it! ......I knew about Natelson and I love his work but I didn't know about the Pain and Fatigue Center in Beth Isreal Medical Center. (I was hoping that a few CFS research centers would pop up that I didn't know about). I will see if I can get some info on that. I'm pretty sure that he's doing an followup spinal fluid study...

    Thanks!
  8. Sasha

    Sasha Fine, thank you

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    Thanks, Cort, lots of hope in that article!

    I hadn't previously heard of Droxidopa - any info on what advantages it might have over other drugs used for OI?
  9. Nielk

    Nielk

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    Hi Cort,

    Isn't it great that there are even more?:cool:
    His wesite that shows the studies is here: http://www.painandfatigue.com/new_research_studies.html
  10. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Got me excited about a possible ritux study by PHANU, i was hoping something like this would happen.

    cheers!!!
  11. Cort

    Cort Phoenix Rising Founder

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    Yep....They're not the only ones...the Open Medicine Institute is trying to get a study going as does Dr. Enlander.
  12. Cort

    Cort Phoenix Rising Founder

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  13. Cort

    Cort Phoenix Rising Founder

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    Here some more info on Droxidopa from the study

    droxidopa [also, known as L-threo-3,4-dihydroxyphenylserine, L-threo-DOPS, or L-DOPS] is the International non-proprietary name (INN) for a synthetic amino acid precursor of norepinephrine (NE), which was originally developed by Sumitomo Pharmaceuticals Co., Limited, Japan. It has been approved for use in Japan since 1989.
    Droxidopa has been shown to improve symptoms of orthostatic hypotension that result from a variety of conditions including Shy Drager syndrome (Multiple System Atrophy), Pure Autonomic Failure, and Parkinson's disease. There are four stereoisomers of DOPS; however, only the L-threo-enantiomer (droxidopa) is biologically active.

    The exact mechanism of action of droxidopa in the treatment of symptomatic NOH has not been precisely defined; however, its NE replenishing properties with concomitant recovery of decreased noradrenergic activity are considered to be of major importance.

    Droxidopa has been marketed in Japan since 1989. Data from clinical studies and post-marketing surveillance programs conducted in Japan show that the most commonly reported adverse drug reactions with droxidopa are increased blood pressure, nausea, and headache. In clinical studies, the prevalence and severity of droxidopa adverse effects appear to be similar to those reported by the placebo control arm.
  14. Sasha

    Sasha Fine, thank you

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    Thanks, Cort - I've been avoiding drug treatment for my OI because of concerns about supine hypertension, BP spikes, etc. so Droxidopa sounds interesting if patients have no more adverse effects than those on placebo.
  15. Cort

    Cort Phoenix Rising Founder

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    The Lapp website says the trial is continuing, the clinicaltrials.gov site said it was terminated for lack of interest from the patients - not sure what is going on but the company that makes the drug is trying to get it into the US market. Hopefully they will succeed.
  16. Cort

    Cort Phoenix Rising Founder

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    This project is creating a huge database that will continue to grow and grow as more studies become available. The CAA envisions it (and all their projects) as being 'open source' and available to all researchers at some point. I believe it will be done later this year.
  17. Cort

    Cort Phoenix Rising Founder

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    Droxidopa and FDA

    Ouch - so much for benign side effects; FDA panel recommends not approving droxidopa

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  18. Cort

    Cort Phoenix Rising Founder

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    FDA Panel Votes FOR Droxidopa for Hypotension

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  19. oceanblue

    oceanblue Senior Member

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    Thanks for another helpful and comprehensive round up. I agree that things are on the up.

    One point - I've no idea why WPI are following up Kerr's work, given his own failure to replicate the earlier findings in a 2011 PLos One paper:
    Not many people seem to know about this study.
  20. Cort

    Cort Phoenix Rising Founder

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    Thanks OceamBlue - Yes, I completely missed that.. how I did I don't know. How unfortunate that was. Gene expression has been problematic to say the least in ME/CFS...Here's another section from the paper:

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