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Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. This second article in a 2-Part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS....
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Lengthy article on the NCI website about XMRV origin

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Jemal, Jun 15, 2011.

  1. Jemal

    Jemal Senior Member

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    Which means the FDA, NCI and CDC are all spreading different messages about this virus :D
  2. justy

    justy Senior Member

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    Thank you Leela for posting the link to this very important full length film. Ive just spent the morning watching it and i am equally moved an appalled at what is going on in the medical world.
    This is such an important documentary i am going to post it to a new thread.
    xx Justy
  3. Bob

    Bob

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    That's how I see it justy! Pretty fishy! (or should that be 'pretty mousy'!?!)

    The conclusions that some of the researchers make just seem to be plucked out of the air, and don't seem to relate to the available evidence!
  4. justy

    justy Senior Member

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    Lol, yes "pretty mousy!"

    You only need to watch the above film posted by Leela to see how easy it is for "objective" science to be covered up, for individual scientists and doctors to be villified by the authorities if it doesnt fit in with their game plan. Im not discussing conspiracy theories here, but we are all intelligent adults and have the ability to imagine that this stuff does go on all the time.

    I have lost two loved ones to cancer in the time since Dr Burzynski has made his discoveries and i feel very very let down. Thats aside from my own personal experiences with M.E, i have had to sit back and watcg in recent years as my eldest daughter is close to being diagnosed with M.E after 2 years of a mystery illness which at one point left her totally bedbound and dependent on me (at the time i was only about 25% functioning) my 11 year old son is beginning to also show signs of increasing ill health and loss of stamina.
    My husband who was always the most fit and well person i have ever met is also worrying me as he keeps having new things wrong with him (insomnia, very vivid dreams, headaches, constant nausea,) I had a gradual onset over a number of years and now it looks like others in my family are going the same way. This is so frightening to think of.
    When is this bullshit going to end and someone going to let the truth about M.E be known? How many more people have to have their lives ruined?

    I am rubbish with the science stuff, but i do read it and i dont ususally comment as i dont feel able to, but despite the fact that it can sometimes lead to misunderstandings and misinformation i think its so vitally important that lay people, the sick and their carers keep up with the science and keep commenting and keep the Governments on their toes. No one else is going to do this for us.
  5. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Justy, you are so right about all this. Outrageous it took 'them' 2 yrs to diagnose your daughter's ME when you already had it! my two cents on your husband- the sooner the treatment, such that it is, the better so maybe ask him to strongly consider some kind of anti-viral treatment- prescription and or natural. the vivid dreams in particular really sound like the encephalitis of ME as i'm sure you know. good luck!
  6. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    This is pretty funny actually, especially with CDC telling something akin to the truth and it being covered up!! :eek::D:D:D
  7. Bob

    Bob

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    Yes, it does have a certain ring of irony about it doesn't it!!!

    It is interesting that the CDC is carrying out positive investigative XMRV research - It's really unexpected!
  8. ukxmrv

    ukxmrv Senior Member

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    Marty,

    There are plenty of ME patients who are doctors, medical professionals, scientists or educated to a level whereby they can read medical papers and understand them.

    If you don't want to discuss thing at this level please don't patronise other patients who can have a logical debate and hold valid opinions on research. That's no fair as some patients are working really hard with poor brain power but great skills to help and explain the papers.

    They aren't doing all this work for themselves totally, some of them make a sacrifice of their limited strength and they do it on behalf of patients, who cannot understand the science. They point us to places in the papers that they think we should know about and concentrate on.

    I'm really grateful to any patient who tackles the science here and brings the issues forth in a considered way.
  9. Marty

    Marty Senior Member

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    Take away the bashing of patients, organizations, top scientists and doctors, and misinformation, there might be something useful under all that. Seems more like bullies on a playground, though.
  10. richvank

    richvank Senior Member

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    Hi, Justy.

    This has probably occurred to you already in the past, but when I hear of a family in which several family members become ill, I wonder about things like carbon monoxide release from the home heating system, or toxic molds in the home, or something that is infectious and contagious. Have you looked into things of this sort?

    Best regards,

    Rich
  11. Mark

    Mark Acting CEO

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    I'm confused. Who exactly are you talking about here? Bad Science?
  12. Marty

    Marty Senior Member

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    We are at the best point in our history with attention from the very top scientists in the world. People who don't understand the process feel it is their duty to voice their criticism to the world, when they should be on their knees in thanksgiving and supporting the people who are trying to help us. Having been a reviewer of the science for the patient community for years, it makes me sad to see the "cognitive paranoia" in this small group but having visibility due to the internet. I'd encourage people to advocate rather than to criticize (science, patients, organizations, etc.).

    That's all I have to say, because I choose to put my efforts toward supporting all positive efforts.
  13. ukxmrv

    ukxmrv Senior Member

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    Sorry Marty,

    You are still not making any sense here. Please be more forthcoming so we can understand you.

    Who exactly are you referring to here (i.e. best scientists in the world) and what efforts exactly are you doing to support the science?

    Many patients are doing their bit here by donating money, raising funds, talking to their representatives, writing to newspapers to correct errors, highlighting errors made by scientists etc. I'm really proud of all the pateints working so hard to help the science.

    Can you please give us details on people who don't understand the process commenting and where we can find this? It does seem to be in the eye of the beholder sometimes to me.

    Where are you on this and who exactly are you supporting. Please let us know the names and how you are doing this?

    It's really just too important to be vague - isn't it?
  14. justy

    justy Senior Member

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    Thanks Rich -yes i have considered some of these issues. I bought a carbon monoxide detector last year after suddenly thinking "imagine if it were that simple" We live in a new built eco home, no mold and i was sick before we moved here. Im not sure how to go about ruling out contagious things here in the UK. I have classic M.E style mitochondrial dysfunction as shown on Acumen labs test. My ex partner also suffers from ill health, mainly lung problems which i also have (we lived in moldy houses together many many years ago -so could have been a factor for that)
    Sorry dont want to hijack the thread -thanks Justin for your reply as well.
  15. Jemal

    Jemal Senior Member

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    The NIH maintains a FAQ on their website on ME/CFS. They recently updated I think.

    http://orwh.od.nih.gov/CSF 2011/faq.htm

    Something to take note off is that they mention separately MLV and "other retroviruses".
  16. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    Are they talking here about replicating the Lo study?
  17. August59

    August59 Daughters High School Graduation

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    Here is a good budget cut!! We have three government agencies doing practically the same thing and all three did the same thing different. They came up with three different answers and have spread these 3 different answers.

    There was more money wasted between these 3 agencies than what CFS even gets budgeted for a year!!!
  18. 5150

    5150 Senior Member

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    by richvank: "or something that is infectious and contagious"

    in my particular strata of ME/CFS, it is wildly infectious and contagious! and virile and debilitating. it causes havoc among families and connected social groups. it is just criminal that it continues to go unchecked while destroying lives. AIDS patients didn't even get this kind of Long-term denial. btw, my cohort seems to be the Lake Tahoe sub-type.
  19. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    You are part of a cluster? do you mind my asking where you are?
  20. kday

    kday Senior Member

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    Rich -

    My sister and I got sick around the same time. I got bit by a tick upon becoming ill and had several bacterial infections, so my case was much more severe. I lived in Tahoe when I got sick. She lived in L.A. We both ended up ill when we met for Thanksgiving. Younger brother displayed similar symptoms for a while and had a few ER visits from the same type of symptoms. However, I think he recovered.

    Is it still going around Tahoe? Perhaps very slowly, but I think so. I have an impression that the Tahoe illness is generally more severe, but perhaps that's my bias.

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