The Power and Pitfalls of Omics: George Davey Smith’s storming talk at ME/CFS conference
Read about the talk that stole the show at a recent ME/CFS conference in Simon McGrath's two-part blog.
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Nancy Klimas, taking care of yourself

Discussion in 'General Treatment' started by heapsreal, Nov 27, 2011.

  1. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    australia (brisbane)
    Its an oldie but a good and worth repeating i guess??

    Taking care of yourself

    (Question from audience) What is going to give us most bang for our buck right now. If weve got $50

    (Answer) Morton Fund, darling. No seriously, Morton Fund really, really needs your money. Were down to the last dollar. The reason why were able to do the genomic study is because of the Morton Fund. I was only allowed to do it on the Gulf War patients and I was able to take just $50,000 and do literally about a half a million dollars worth of research because I tagged it onto another study that was well funded.

    (Question from the audience) What do you think is the most important thing that we could be doing for ourselves?

    (Answer) Theres some very important things that you can do for yourselves, OK. And remember that the issues with chronic fatigue syndrome are that sleep is non-restorative, the immune system is over activated and not working and viruses
    Are you excited? Yeah, you should be! It is damn exciting! This is great! This is the good stuff; this is what youve been waiting for
    reactivate, the endocrine system is acting a little funky and is a little disregulated and your autonomic nervous system which controls your blood pressure and pulse and all that is some sort of seesaw yo-yo thing that goes up and down. And the combination of all that makes you ill.

    First you need to , well its so simple, eat right. The rule of exercise exercise makes you relapse but you can exercise up to the point of relapse and youre better than not exercising at all. So, in a global way the easy way to call it is the five minute up, five minute down rule. You can do five minutes of something then you got to take a five minute break. Five minutes then another five minute break. You add it up by fives not 5, 10, 15, 20. 5,5; 5,5; and keep adding fives so you recondition, OK.

    Supplements Supplements are aimed at first, good nutrition, but you are very, very deficient because you use up stuff very quickly so you use up the B vitamins and your minerals much faster than the next person. So a good multi vitamin, maybe double the normal dose of the multi vitamin plus a good B complex. Omega 3 fatty acids because they are anti inflammatory and quiet tumour necrosis factor but they dont do it til you get up into the 4g range so one of those little caps isnt enough. You need to get up to 4, 5, 6.

    CoQ10 was anti-fatiguing but it was just the best antioxidant tested. Just absolutely sucked up all those free radicals better than anything else. They used a dose of 60 twice a day but they are tiny little people so do the maths for yourself. If you are twice the size of a Japanese person you might just want to double up on that CoQ10.

    Dig Deeper! COQ10 and ME/CFS

    Inosine Theres a drug called Isoprinosine, Immunovir, thats a pharmaceutical grade neutraceutical. Then we presented at the Reno meeting our own open label work with a hundred patients. And we had a very nice response, both immunologic and clinical response in the majority, 85% of the patients that took Isoprinosine which is Immunovir. Now, Inosine is the over the counter variation on that theme.

    If I can go back to sleep for a moment. Non-restorative sleep is a big problem for chronic fatigue patients. Its one of the diagnostic criteria. Anyone here whos ever had a restorative nights sleep with chronic fatigue can tell me that when they do have a good nights sleep they do have a better day. What we presented at the Reno meeting was our own review of charts and found a surprising number of chronic fatigue patients that develop apnoea over time, sleep apnoea. Youre so debilitated that you have a disabling fatigue, you have a justification for a proper sleep study. So I guess the studies.

    Dig Deeper! - Isoprinosine and ME/CFS

    Xyrem Theres a drug thats in clinical trial for fibromyalgia, its called Xyrem. Its a stage, slow wave sleep inducer and it puts people out very quickly in just 20 minutes, 10 minutes, sometimes 5 minutes. You take it at the bedside, you go down to a deep sleep. Now, during deep sleep is when you make your hormones at night and its a really important thing and most of you dont have any slow wave sleep. When you get your sleep studies youll find youve got none and so inducing slow wave sleep might be good. Xyrem has had a successful fibromyalgia clinical trial and it is at the FDA trying to get the fibro label on the drug so thats probably going to be the one thats going to be reimbursable by your health insurance claim.

    Dig Deeper! Xyrem and ME/CFS

    (Thanks To fds66 for transcribing this)

    View the original video at CFSKnowledgeCenter here

    http://aboutmecfs.org.violet.arvixe.com/Rsrch/XMRVKlimasII.aspx
     
    anne_likes_red and maddietod like this.
  2. Lynne B

    Lynne B Senior Member

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    sydney, australia
    Thanks, Heapsreal, I've made a list of the neuroceuticals Nancy Klimas recommends and I'll try my chemist. I'm currently taking C0Q10 with fish oil and I have the feeling it's been helping me this year. I've seen at least one of the others in a health food shop - I think it was Isoprinosine - but it said lactose coating, so decided against it. I'll do some research here before I try any of the items on Klimas's list.

    cheers, Lynne
     
  3. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    She never seems to talk about many supplements. I think integrative doctors are helpful for that. So many are needed.
     

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