1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
Discuss the article on the Forums.

New XMRV study to be undertaken.

Discussion in 'XMRV Research and Replication Studies' started by V99, Mar 31, 2010.

  1. Cookie Monster

    Cookie Monster

    Messages:
    76
    Likes:
    0
    I used Mirtazapine in the past myself, it didnt do anything in terms of altering my mood but it was one hell of an effective sleep med, worked on me in the same way you described, almost instant. Knocks the socks off of things like Zopiclone. However, there are still some potentially dangerous properties i have since discovered with it too so noone should take this as an endorsement .
     
  2. free at last

    free at last Senior Member

    Messages:
    614
    Likes:
    119
    oooooooo someones not happy about the fact that they was politley asked to start a seperate thread about something that hasnt been proven, if it turns out as you suggest, then of course that will not make any of us happy, But i agree with the statement whole heartedly that after so many years of being laughed at, and left to rot in a bed with a illness that most get very little medical help with, can you really blame us for not wanting to see something good in this.

    Indeed untill what your saying is proven to be true, or actually pans out, then at the moment its not much more than a theory that really puts just negativety into a thread that brings just a little bit of hope for the future, from a group that so clearly desperatly need hope, any hope.

    If you cant see that, or are insensetive to that, then ill let on lookers look at this conversion and they can decide for themselves who if anyone is just a little bit out of line here. I could go much further but ill refrain myself, and try be polite before it starts to get real negative, on what could be something positive for us all.

    If your right about this, then at the moment theres no way of really knowing for sure, and i still think we can ( should ) try to be just a little bit optomistic untill the conspirecy breaks our damm hearts
    Thats the whole point, hope you really understand Mithriels view more clearly now, which i wholeheartedly agree with, Thanks for being understanding happy easter
     
  3. Andrew

    Andrew Senior Member

    Messages:
    1,962
    Likes:
    1,229
    Los Angeles, USA
    This is the kind of thing I've been waiting for.
     
  4. JillBohr

    JillBohr Senior Member

    Messages:
    247
    Likes:
    0
    Columbus, OH
    Natasa posted a thread regarding mouse cell lines being used in vaccines and other biologicals here.

    http://www.forums.aboutmecfs.org/sh...ction-of-biologicals&highlight=vaccines mouse
     
  5. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,175
    NYC (& RI)
    Hells Yeah!! If being exploited by big pharma is wrong, I don't wanna be right!:D:D
     
  6. julius

    julius Watchoo lookin' at?

    Messages:
    785
    Likes:
    5
    Canada
    Gee funkster...I did;

    from post #54

     
  7. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,175
    NYC (& RI)
    Research into Other Retroviruses could Yield an XMRV-style Bonanza for Us.

    WPI and Dr. Mikovits are so smart, saavy, effective and efficient! My respect for them grows every day. It is people like Dr. M and others at WPI who really spur huge advances in science, tech and society.

    I kind of pity the people I read on places like erv blog who are obviously bright and knowledgeable, but are so arrogant they think they know it all when I, as a non-scientist but informed ME patient, see through many of their naive mistakes. They have such a childlike faith in 'science' as it is currently practiced. America was built by people who combined knowledge with vision and passion to help (or to at least 'add value').

    Dr. M has made these possiblities clear to big pharma. That a big pharma study such as this has been greenlighted is so huge! Dr. DeFreitas tried nobly to do this with Chiron, but unfortunately NIH's Steven Straus told Chiron the DeFreitas retrovirus (CAV) was BS and we were a bunch of neurotic middle aged women and he was able to kill pharma interest in retroviruses in ME. Thank god WPI has been smart and diligent enough to learn from CDC's and NIH's savage and totally unwarranted destruction of her reputation.

    I agree this could be the next blockbuster drug with monster profits. I feel that XMRV is causative, but there are probably one or more retroviruses (CAV, and perhaps JHK) and retrovirus/virus hybrids (Dr. Martin's bug, etc.) contributing in some fashion. Once we get some momentum and funding I'd really think a big push to look into these bugs would yield a lot of fruit. On CAV for example- DeFreitas has done so much of the groundwork, and tech has improved so much since her finding in 1991 that a little research could potentially produce another XMRV-type bonanza for us. I really hope WPI looks into these.
     
  8. Bob

    Bob

    Messages:
    8,435
    Likes:
    11,184
    South of England
    I've found the articles where I read about it:

    http://www.newscientist.com/article/dn18442-drug-for-depression-tried-on-stressedout-rats.html

    http://www.newscientist.com/article/mg17022954.600-a-mind-under-siege.html

    Here's a quote from the first article:

    And from the second article:

     
  9. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,175
    NYC (& RI)
    So True!

    ------------
     
  10. Hope123

    Hope123 Senior Member

    Messages:
    1,142
    Likes:
    539
    This is correct. Dr. Klimas in her talk last December stated that vaccination causes B and T cells to become activated and to proliferate. If a retrovirus happens to be sitting quietly already in our chromosomes, the activation of the immune system by vaccination will cause some immune cells to divide. Each division means that another copy of the retrovirus is generated and this might tip us over the point to symptoms and illness. This is a theory of course but implies that it's not vaccine contamination that is leading to illness but activation by the vaccine. Hence, onset might not be traced to one type of vaccine (flu, hepatitis, tetanus, etc.) but rather to a number of different vaccines.
     
  11. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,175
    NYC (& RI)
    This strikes me as so key and makes me very hopeful! Whether or not a negative bias exists going in to a study strikes me as the single biggest predictor of results.
     
  12. cfs since 1998

    cfs since 1998 *****

    Messages:
    577
    Likes:
    4
    No, because I think if GSK suspected that one of their own vaccines contained XMRV they would be ignoring it, not funding a study. The simplest explanation is usually the correct one: a pharmaceutical company wants to sell products.
     
  13. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,175
    NYC (& RI)
    Wow! Really insightful! You're making me really wonder now.

    The energy that many establishment players have put into supressing and warping ME science and crushing patients makes me think that it is possible there is some big 'secret' out there (beyond the fact that there is an severe infectious disease out there , care for which insurers do not want to pay) such as this. Food for thought.
     
  14. usedtobeperkytina

    usedtobeperkytina Senior Member

    Messages:
    1,384
    Likes:
    186
    Clay, Alabama
    Motivation issue...

    Well, I don't think there is any evidence yet that XMRV is in vaccines. Unless GSK has tested their vaccines and found it, they should have no fear in XMRV research.

    Even if they did, the point here is there is more than one drug company. If GSK didn't do it first, someone else would. How much better to be first and get the sales first along with the golden egg called the patent. This is not a time to be reading the scientific journals waiting until everything is more settled before you start a study. By that time, some other company would be half way around the track while you are just starting.

    And given the past, very likely there will be more than one drug (see HIV). So there is enough possibility for many. But the first one out of the gate gets the patent and the patients. This is why two drug companies called Mikovitz the day the Science Journal article came out. It was not validated and yet they still jumped like a scared frog.

    Also, as much as companies have been trying to push anti-depressants on us by blurring the lines between CFS and depression symptoms in their ads, I assure you they have been keeping up with latest studies that show the difference and they know their drugs aren't making CFs patients well. They can access the Internet and they can read, too.

    Even if they thought it was the same, the patients and many doctors don't. So you got to market based on perception, whether it is reality or not. Remember, CDC did announce in 2007 that CFS is a separate and real illness.

    There's a whole bunch of patients carrying a diagnosis of CFS and they want our money or our insurance money. To get the medicine that markets for "CFS" in the ads would be big bucks.

    It's capitalism. And while I think of capitalism is immoral when it comes to health care, occasionally it does work. Competition is good.

    Tina
     
  15. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

    Messages:
    2,490
    Likes:
    1,175
    NYC (& RI)
    That's interesting. Hadn't thought of that much before. I think that uneducated doctors and laypeople are less likely to think we're lazy than depressed since the average losses experienced by pwME are so huge and the distress expressed at this by patients doesn't jibe with the 'happy lazy' person image. But I do have to say that this false attribution to laziness is common among less than averagely disabled people with ME.

    I have an about average case of ME- can only work say 5 hours a week with extreme difficulty and my parents were convinced forever that I was malingering and didn't want to work, so the laziness false attribution has been a huge problem for me.
     
  16. fred

    fred The game is afoot

    Messages:
    400
    Likes:
    1
    Bob: "Duman hopes that a cytokine inhibitor could be developed as a treatment option for depressed people who don't respond to conventional therapy. "Depression is not just a single disease," he says. "A subgroup of depressed patients could have the inflammatory condition, while other subgroups might be better off with existing antidepressant drugs." "

    [Apologies for being too stupid to work out how to quote this properly]

    Given that cytokines often have been mentioned in the same sentence as ME (see quote below from telecon discussion between Dr Mikovits and Dr Cheney), does this mean that cytokine inhibitors may be a potential treatment for both this disease and depression?

    Cheney: "In the Lake Tahoe epidemic many years ago, but also here in my clinic in Ashville, we frequently see an elevated CD4 to CD8 ratio, primarily due to CD8 depletion, and I wonder if you might comment. Is CD8 depletion something that XMRV might be able to cause?"

    Mikovits: "We dont see XMRV as a cytotoxic virus, thus far. Certainly, it is possible through indirect effects, through mediators or whats known as cytokines, we could see dysregulation of the adaptive immune response which is the CD8 cell. But we dont see direct cytopathic. More this virus seems to be like HTLV-1 and not kill its cells like HIV."
     
  17. Bob

    Bob

    Messages:
    8,435
    Likes:
    11,184
    South of England
    lol, don't worry fred, it takes a while to get used to the forum...

    At the bottom of the message you want to quote - If you click on 'Reply with Quote' - it will automatically quote the entire message for you - you can then delete any of the text you don't want to include - but make sure you leave the QUOTE marks at the beginning and end of the text intact. i.e. the bits that look like this: [/QUOTE]
     
  18. Bob

    Bob

    Messages:
    8,435
    Likes:
    11,184
    South of England
    I agree. This isn't a cover-up story... JM has already said that she has been contacted by pharma companies about collaborating to find successful anti-retrovirals for XMRV.
     
  19. Marco

    Marco Old blackguard

    Messages:
    1,314
    Likes:
    1,000
    Near Cognac, France
  20. Bob

    Bob

    Messages:
    8,435
    Likes:
    11,184
    South of England
    That's very interesting Marco. There's no suggestion that they intend to apply this RNA technology to viruses, although it's a very interesting thought that they might be able block viral DNA/RNA, and therefore block the replication of viruses, using these drugs. The article talks only about blocking human RNA though, and I can't see how this would apply to XMRV research.
     

See more popular forum discussions.

Share This Page