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Hunting down the cause of ME/CFS & other challenging disorders - Lipkin in London
In a talk to patients in London on 3rd September, Dr. W. Ian Lipkin described the extraordinary lengths he and his team are prepared to go to in order to track down the source of an illness, with examples ranging from autism to the strange case of Kawasaki disease.
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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. OK, so let me rephrase this:

    Are you serious? I mean, really serious about something like that? Are you advocating that we send emails to people we don't agree with, with the direct intention of scaring them?
     
  2. Knackered

    Knackered Guest


    I think we can all agree that isn't the way forward.
     
  3. bullybeef

    bullybeef Senior Member

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    Andrea Whittemore has suggested on her facebook page that the WPI are making another announcement on Monday (it isn't normal to issue a press release on a Friday).
     
  4. George

    George Guest

    BullyBeef I'm glad you did too. I hope that snoopy reporter somewhere has a field day with this. Ah the days of instant response have their moments. (grins)

    Hey Julius I feel ya dude, thing is these guys are the real deal, they drive government policy, medical policy, heck, they even have those little white sheets of paper that says they paid fo. . .er I mean earned their PHds. So no I don't agree that sending them scathing letters would do much for the overall cause. (might make me feel better though! (grins)) Nah, hit em where it hurts, try to get them in the media. You can be tried and convicted in the media and public opinion pretty quick.

    But I'll say this. . .today Dr. Mikovits held a yak session at Cornell University and the public wasn't invited. (grins) So that information regarding unpublished work could be discussed among the researchers there. That means there is work and information that directly impacts new work coming up. The Dept of Health and Human services has moved CFS from the Women,s health division to public health and safety, the blood group has nearly got a serology test done and Dr. Reeves has had a lateral move (no raise for him!) from a directorship to an advisory capacity in another area.

    These ripples are scaring the people who have their dirty fingers in your life. They don't need us to send them letters to scare them. They are scared the way I read it. Shakin' in their boots, desperate, off the wall scared down to their shorts. So send this off to all the reporters you can think of guys including in the U.S.

    My mama always said. . ."It might leave a stain, but dirt always comes out in the wash". . .wash day's comin'
     
  5. gracenote

    gracenote All shall be well . . .

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    This quote from Myra McClure is specific:

    ". . . no link between XMRV and Chronic Fatigue Syndrome, at least in the UK."

    Since they did not check anyone else, are they thinking there is XMRV in the UK but not in CFS since CFS excludes "real" diseases? So people with "real" diseases might have XMRV? And if you test positive for XMRV, you couldn't possibly have CFS? Just wondering out loud.
     
  6. Mark

    Mark Acting CEO

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    ...bearing in mind that this is, I believe, illegal to do in the UK, and illegal to publicly encourage other people to do...
     
  7. Koan

    Koan Be the change.

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    This is a public arena. Of course it is being read by Wessely and his ilk. Anyone who is interested in us or in ME will find our public discourse of interest. And, of course, some will sign onto the forum and become members so they will also be in chat.

    It isn't paranoia to acknowledge that this forum and the chat room are public.
     
  8. George

    George Guest

    Good point Gracenote, you have a great and logical mind. They could be going in that direction but I think then they will have to face the backlash of having a different case definition than the rest of the world?? Could this test be for Ramsey M.E. patients then???
     
  9. natasa778

    natasa778 Senior Member

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    I wonder what IC will do once the serology test becomes available. Are they planning to come up with their own version of antibody test then? Or botch up the standardised one...
     
  10. George

    George Guest

    Not parinoid

    Lily and Koan, bingo, this isn't paranioa it's reality. Heck, people we've been quoted in news articles. Fortunatley this board is hosted in the US (I think) and you can say just about anything here. You can even take a poll on assassinating the president. (head slap and eye roll)
     
  11. Koan

    Koan Be the change.

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    Hey Bullybeef,

    Andrea said this was a project of hers that would be announced, not a WPI announcement. She as a number of her own projects on the go - she's writing a book, etc.
     
  12. Koan

    Koan Be the change.

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    We have to figure out how best to use this fantastic tool we have here. We spend a lot of time thinking about how to create other tools in other mediums but we are, right this moment, using what is arguably the most potent medium there is.

    So, let's figure out how to really work the forum! :victory:
     
  13. Mark

    Mark Acting CEO

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    Bang on Gracenote, I think that's exactly the road we're headed towards with all this - they'll say that if you've got XMRV, obviously you didn't have CFS after all, which is something else altogether...and so long as less than half of those on their books test XMRV+, they can make this case, preserve a patient group of unexplained XMRV- CFS conditions, regroup and carry on. With the next set of toxins due to come online, their client numbers should be back up to normal in next to no time...
     
  14. sproggle

    sproggle Jan

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    I know it is very difficult to stay calm and collected in this terrible situation but scare tactics are not the answer. How will we ever be seen as credible? Not to mention the fact it's just plan wrong.

    We need to do whatever we can to further our cause but in an intelligent and repectful way. It is the only way to get support for our cause.

    I hope you also realise this and are just having a really hard time at the moment and therefore needed to vent. It's completely understandable that you feel angry and hurt we all do but sending threatening emails would be a terrible mistake.

    Jan xx
     
  15. julius

    julius Watchoo lookin' at?

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    Again, I'm not talking about people I don't agree with.

    freep, I think from other posts I have read by you that you are a journalist (I could be wrong there, please correct me if I am). You must be aware of the corrupt practices that powerful corporations (and sometimes greedy individuals) get involved in. And the immeasurable suffering that these practices beget. And that this all takes place with absolute disregard for human rights and dignity.

    From all the evidence I have seen, I am in no doubt that this is what is happening here. If someone can show proof that I am wrong, I would be thankful. But at this point, I just don't see it.

    If you read my earlier posts you will see that I was offering some of the most balanced comments on this thread. But after reading the statements from Mclure and Wessely, the verdict is in.

    So, how do you deal with this sort of selfish corruption? I personally feel that whatever it takes to get these people out of the picture is fair game. They are not dealing fairly and honestly, and they have the power to add to or extend my suffering greatly. Their actions are attacks on my life, health and wellbeing.
     
  16. ukxmrv

    ukxmrv Senior Member

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    I'm due to be seen at the CFS clinic at Imperial College in a few months. Yes, they do have a clinic run under Janice Main who is an Infectious Diseases Consultant. She co-authored a paper with Dr Kerr. I'm told that her clinic only really offers CBT and sympathy, so it will be interesting to ask her about the IC XMRV test and if she intends to let her patients have that test. I imagine she's a bit conflicted and probably annoyed that IC didn't approach her for CFS patients. Maybe she's just annoyed.
     
  17. George

    George Guest

    Way cool, can't wait to hear your report (grins) Plus, you're XMRV+ right??? Are you going to mention that??
     
  18. Kati

    Kati Patient in training

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    Koan, you're a brilliant woman!!! :hug:
     
  19. Actually, I'm not, I run a small media business, but I'm flattered that you think so :ashamed:

    Oh, ABSOLUTELY. You betcha. I spend most of my waking hours campaigning against such injustices... my business has a lot to do with it.... but I don't want to reveal too much here. Suffice it to say a know a little bit about how to campaign.

    I'm sure one look at my sig should convince you that we're batting for the same team here, Julius.

    Yeah, that is exactly where we disagree.
    In my opinion, the minute you start using fear as a weapon, you have lost the battle.

    There is a way to learn how to deal with this situation, and that is to look at history. We have some recent history which almost exactly parallels our current situation, which is the history of Multiple Sclerosis and how it became accepted as a condition with a physical cause.

    Rachel xx
     
  20. julius

    julius Watchoo lookin' at?

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    Thanks for the discussion Rachel and everyone else,

    When I look at history, I see rare occasions where calm, reasoned approaches have seen the weak and disenfranchised overcome the corrupt and powerful. But These are rare. In the vast majority of these type of situations, the meek do not inherit the earth. Rather, they are trampled underfoot. This is simply a fact of life as far as I see it.

    To give you a little more direct answer to your question Rachel, no, I am not saying we should all write nasty letters to these people. But I don't think we should necessarily discourage any hotheads who want to do it.

    I can't find the article where the author mentioned scientists not commenting out of fear. But, if Wessely even declined one interview out of a need for caution, then I see thaqt as a good thing.
     

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