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Imperial College now offering PCR XMRV testing

Discussion in 'XMRV Testing, Treatment and Transmission' started by Kati, Feb 4, 2010.

  1. Koan

    Koan Be the change.

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    I don't want to comment on what transpired earlier on this thread. I just want to commend Muffin on her remarkably graceful and generous response. You have shown real strength of character.


    All the best as you move forward during this difficult time.

    Koan
  2. acer2000

    acer2000 Senior Member

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    So what you all are saying is "The British don't care about what the people in the colonies think". I think we should go dump some tea in the harbor. I kid... I kid... :D
  3. Gerwyn

    Gerwyn Guest

    they have looked for and in some cases found xmrv specific antbodies in the sera of infected patients The ic protocol could pick these up
  4. Andrew

    Andrew Senior Member

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    I have yet to see a prostate XMRV study that used blood samples.
  5. Gerwyn

    Gerwyn Guest

    please dont take it personally and waste the tea! british psychiatrists dont care what british neuroscientists or neurologists think

    they are more comfortable with subjective opinions i think facts frighten them
  6. Koan

    Koan Be the change.

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    This makes a great deal of sense to me, Gerwyn.

    I think you've cracked it.
  7. Gerwyn

    Gerwyn Guest

    the negative german study looked for xmrv antibodies in the sera of the patients KOHN et al retrovirology 2009
  8. acer2000

    acer2000 Senior Member

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    On the Mac (Mac OS X) there are essentially three ways to do this. You can do "command-shift-3" and it takes a shot of the whole screen. If you hit "Command-shift-4-spacebar", it gives you an icon of a camera and then you can select a window to take a screenshot of. You hit the key combination "Command-Shift-4" and it gives you a crorsshairs to outline the part of the screen you want to take a screenshot of. This last one is helpful if you don't want the whole screen, but don't want your shot limited to just a window. Any way you do it puts the file on your desktop after making a "camera" noise. There are also some programs you can download that add functionlity, but those are the basics built into the system.
  9. flex

    flex *****

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    Amen to all of the above. I've been there too. People think that XMRV is going to change things in a flick of a switch. IT'S NOT!!! This denial and withholding of diagnosis and benefits is a political issue nothing to do with science. The science is out there, the docs just hold the access to the truth back from the patients. Its rampant accross all illnesses.
  10. Gerwyn

    Gerwyn Guest

    i agree completely AMEN
  11. Martlet

    Martlet Senior Member

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    Boston Tea Party <--- The invention of ice-tea.
  12. Martlet

    Martlet Senior Member

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    Muffin

    Yes, you were very gracious, but you have misread the English. ;) Just go a few miles north of where you lived and people can sock you right between the eyes, along with the best of 'em. I had to relearn how to talk when I moved from S. Yorkshire down to Suffolk.

    Anyway, you take all the time you need taking care of what you need to do. And if you are taking time away from us, hurry back because we will miss you.
  13. flex

    flex *****

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    Firstly Muffin,

    I have to admit I have not read anything you have sent to any UK authority. However I see no reason why you should not do so. I am a Brit. This issue affects all of us worldwide. As for humor differences and culture differences I don't agree either. We have many different personality types on both sides of the pond. If your letter was threatening in any way that would be a different matter and of concern whether you were American or from Timbuktu. There are plenty Brits who are capable of damaging the cause as well as any other nationality.

    I really think that people are being a bit deluded if they think we can carry on as we have the last 30 years. IT HAS NOT WORKED!! No threats and no violence is essential but outright telling the truth as it is seems crucial. We should not run and hide and be afraid. This is a dirty fight led by the establishment we should fight back with equal sensible vigour. This is not the old England of the village green and "lets play cricket".

    We need people form all over the world working for the same cause holding authorities to account in whatever country they happen to be in. Martlet you have lived all over the world and got involved with the Obama campaign as a Brit and he WON!!

    The more letters these charlatans get telling them we know their game the better as far as I am concerned. It must be peaceful and not deemed to be threatening anything else is down to individual expression.

    Discouraging people from being involved in advocacy is wrong in my opinion.

    Muffin, thank you for the concern you express for us Brits and please do not be discouraged from being an advocate for any world citizen.
  14. Koan

    Koan Be the change.

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    Thank you, Flex, for highlighting that the those who mean you harm will have a easier time of it if you stand alone. We who have been in this for decade upon decade understand. I try always - though not always successfully - to take the peaceful approach but I am resolute in my commitment to the global community of people with ME/CFS. Were I to ask before speaking about something which affects those with ME/CFS, as Rachel suggested, who would I ask? We have radically divergent opinions about how best to respond. We are allowed that as we all have the good fortune to live in societies where free speech is valued.

    peace out,
    koan
  15. VillageLife

    VillageLife Senior Member

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    Today im asking my self why are they testing prostate patients and not CFS patients for XMRV.

    (i think they were going to test both- but they got so much stick from the CFS community they changed there 'story'
  16. Martlet

    Martlet Senior Member

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    Flex, I did work on the Obama campaign, but every half a dozen or so people I contacted asked me where I lived and I had to go through the spiel, telling them that I live in the USA and am the wife of a retired US serviceman. Had I been abroad, I would have been told to mind my own business. In fact, in the run-up to the war in Iraq, I received phone calls from all over the USA from people telling me to mind my own business and that if I didn't like it here, I should go home. That was an awful time when even one of my closest friends turned on me, accusing me of meddling in US affairs and calling me names as we ate breakfast in a local cafe until the waitress stopped serving me and the entire roomful of people were staring at me. Also, I could not have a PAID job on the Obama campaign because I am not a US citizen and even though I am legally allowed to work here, it was still seen as potentially damaging. The Republicans don't employ non-citizens for the same reason. So, while members of the general public may have no problem with those from other countries joining their cause, I do know that official bodies take a very different view.
  17. Koan

    Koan Be the change.

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    Hey Martlet,

    Don't you think that example - I know you did not raise it first - is a bit of apples and oranges? Attempting, as I did myself from Canada, to play a part in a sovereign nation's election process, specifically, is very different from being part of the ME/CFS community and advocating for good science and productive, transparent scientific cooperation globally. I don't think they are analogous.
  18. Muffin, my hat is off to you.
    Even when you've been going through hell, even when you're so angry and fearful, you've been generous, gracious and ever so sweet in your response to me. I'm blushing.
    I wish you all the best. If there is anything I can do for you, please let me know. Thinking of you.

    Rachel xx
  19. Martlet

    Martlet Senior Member

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    No I didn't, and I wouldn't have because I agree that it is not the same thing.

    Everyone is free to write to whomever they choose, but it depends on whether we want our letters to have an effect. What is our aim? If it is to appeal to people's "better angels" then we need to do it respectfully, with personal stories. If we want to write angrily, then we have to have an "or else" with which to beat someone over the head, figuratively-speaking. "Stand with us or else you won't have my vote/I won't pay my taxes/we won't fund your (whatever)" can work, but "Stand with us or we will be watching you" really has no effect. Watching them and then what? They - whoever they are - already know the world doesn't give a biscuit over what happens to us and that the only people "watching them" are a handful of sufferers who cannot affect them, one way or another.

    I think Americans would do better to concentrate on changing what they can over here, knowing that if the CDC comes over, then the British will follow very quickly.

    Sorry if I sound like a cynic, but I've been around politics for a very long time, one way or another.
  20. flex

    flex *****

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    Martlet,

    I don't really agree, this is not a border issue to me. Wessely and co work for Multi nationals. When the US want a rent- a-biostitute to deny GWS they call on Wessely. I don't see the American officials telling him to mind his own business then. Large global Pharma is involved in vaccines that could potentially damage our children.

    British beef was being sold around the world whilst the UK government was denying BSE. This is a global economy with global corruption spin and cover up. We have every right to complain to who ever we want if it affects our life. Wessely affects Muffins life and millions of others in numerous countries. It seems you are suggesting that we should play by the rules of the Status Quo. Again, THEY HAVE NOT WORKED! this is the era of mass communication and the establishment don't like that - all the more reason for us to research and question anyone we like. From what I gather Muffin spent some time in England. This means she or any family member could have potentially caught a disease here that our government has an obligation to protect against. They are clearly not doing this.


    If people fell out with you for your politics Martlet, more fool them, because you seem like a million carat gold kind of person. I am quite surprised that a moderator on a global site for worldwide expression should appear to take the stance to stick to your own backyard. We have to let the establishment know that times have changed and we will continue to hold them to account.

    Also don't forget that the CDC is still a very tactical issue, the science has been out there for years. Just accepting XMRV for whatever role it plays does not stop the psych lobby and their conspirators from saying "you also have a functional somatic disorder". This is exactly the tactic being employed by the APA for the new DSM. Reeves has only moved down the corridor on the same salary. We all have to take a look at the politics of the DSM V and stop thinking this is about good scientists versus nasty scientists

    "Starting Feb. 14, Reeves will be senior advisor for a NEW mental health surveillance program that will explore how various diseases and conditions affect mental health."

    It seems you will get marched out of one door in the CDC with a positive XMRV test straight into the office of MR Reeves to be given your mental health diagnosis then sent for CBT and GET because "your physical illness wouldnt cause such disfunction". Just like they say to people with Lymes disease and MS.

    The science is not going to "settle" this in the CDC so that the corrupt UK and US authorities, insurance companies etc all roll over and give us a big apology. If this was purely a scientific issue it would have been over years ago and we may have all had a cure by now. I have seen this belief an unsettling amount of times now and am concerned that we are playing right into their hands as we sleep walk into another disaster.

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