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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.
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Article: Mikovits Era at WPI Ends - The WPI Makes the Right Move In Letting Chief Researcher Go: An

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Oct 5, 2011.

  1. Angela Kennedy

    Angela Kennedy *****

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    I'm guessing paddygirl's short summary was using XMRV as shorthand, and perfectly acceptable it is in the circumstances (a short summary by a patient about a patient conference).
     
  2. undcvr

    undcvr Senior Member

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    At this point I will have to wonder why they were not published.

    And HGRVs as the name implies is found in every human being. It's been with us in our cell lines for hundreds of thousands of years. They have been with us since we were mammals and hence ironically proves evolution in another way. There is nothing very special about that. How is that different from CMV, EBV or HHV6 that theoretically infects up to 90% of the population.

    It does not answer the question as to what makes someone with ME/CFS so 'special' that for that specific individual the virus decides to express itself. In fact I think it makes our argument worse. It makes it sound like our immune systems are so weak that we are prone to the most common and usually contained pathogens out there. That isn't a very good conclusion.

    At least with XMRV she stood a chance because it was a novel discovery and it was being talked about mainly along the lines of HIV. But I can tell you this, I went to school for statistics and there is a branch of statistics that studies how a new epidemic spreads and then enters the mainstream, eg, Bubonic Plague, Avian flu, SARs and HIV. There is a mathematical path to which the new disease will spread, a tipping point and then a jump. Something like a vector of transmission.

    CFS as caused by XMRV never fit any of those. You don't necessarily need a medical background sometimes to know that something didn't sound right.
     
    Firestormm likes this.
  3. paddygirl

    paddygirl Senior Member

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    Hi Firestorm, given that most of the audience had never heard of XMRV I imagine that it would have completely confused people if a potted history of the last two years was given. I've been on PR and Facebook every day for the last 2 years (exactly) and I could see the eyes of friends present glaze over as I tried to explain the convoluted history. My memory is better on the people than the science.

    To me and maybe all of us, Judy Annette Dan Vincent are almost ME household names. Not so the audience, except for a few. In fact some left during Judys talk which was a pity, as most women my age were not offered science in school, and didn't know what to make of it. They were probably wrecked by then anyway. I think Judy took the measure of this quickly and slowed her breakneck speed for us. She did mention HGRV's too.

    I'm sorry to say that I am seriously memory challenged and didn't take notes but many did and I'm pretty sure I saw a video camera. I had driven two hours after work and the goldfish brain was even more in evidence.

    The talk was very similar to one I saw in London at Iime and NJ at Eatontown 2010.

    Judy did mention being fired and it was obvious it hurt, she is in talks about a future collaboration with an Institution. She also mentioned the fraud nonsense and while outraged I don't think she was exactly quaking in her boots. * MY INTERPRATION * :D I know this is an odd thing to say on a forum but I'm afraid to say something that I've misinterpreted and then see it hit the web and take legs. I think we all see evidence of that all the time.

    One thing is for sure, a recent poster somewhere (here?) said Judy knows nothing about ME. Well cobblers to that as she must have sat through every masterclass on ME given in the last 5 years. She took great interest in Dr Perrins talk and wanted to talk to him later.

    I met a woman in the loo who was a bit perplexed and asked if all we had to do was eat well and we would be 'fixed'. She was referring to the nutrition talk that I missed. I could have cried at that. I sometimes think that we are in danger of forgetting that for everyone who tries to educate themselves on ME/FM there must be a few hundred (?) who just struggle on, bewildered that no one is coming to the rescue. I know that PR has been a lifeline for me, even though I am mostly a lurker in an attempt to educate myself. I'm often perplexed and a bit intimidated by the science chat.

    One thing is for sure, Judy is no politician and I for one am glad of it. :D

    If we rely on the status quo we will, as my rheumy loves to tell me "die with it". God but I'd love to prove him wrong.

    Paddy
     
    Firestormm likes this.
  4. ukxmrv

    ukxmrv Senior Member

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    undcvr,

    Any new virus doesn't need to act under an existing model. It just needs to act as itself. We have so few human GRV's to know if one model will fit all. HIV and HTLV act differently.

    An answer but when your inital claims were proven wrong you just jumped out on another tangent of pure opinion and no facts. You could do this forever if any one bothered to reply.

    Please address your original claim that Dr Mikovits was saying that new studies were coming out and the lying part

    I addressed your comments but you didn't address mine
     
  5. Enid

    Enid Senior Member

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    @ paddygirl post 83 - thanks for all your input here. (Sadly) one sees the picture - still so much work ahead for those working for ME.(but moved some way in my 12 years)
     
  6. Dreambirdie

    Dreambirdie work in progress

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    Paddygirl:

    I got the following message on my FAcebook page today:

    "Great news From Dr Mikovits talk in Ireland yesterday!
    (I'm quoting from Ian, who attended) The news is " 'that is that she gets to keep the grant money and the cell lines, and that she already has an offer to work at a Canadian institute. Which she says would be great because Canada will be an easier and better place to conduct research' "


    CAn you confirm this?
     
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  7. Enid

    Enid Senior Member

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    Yippeeeee ! Too good to lose from ME research.
     
  8. Firestormm

    Firestormm Guest

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    Thanks Paddy for the extra information. I wonder if you wouldn't like to start another thread on this talk given what else seems to be coming out from it and you never know - others might find the video or a news article to go with it maybe?

    I noticed in the Nature blog I will post in a moment they said the decision from NIH had yet to be made. But this information from Ian might well be more recent I suppose. Be interested to hear confirmation of this from WPI.
     
  9. paddygirl

    paddygirl Senior Member

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    Hi Firestorm,

    Yes it was Canada that Dr Judy mentioned, I don't know why I didn't say so. Probably worried that it might backfire. Mind you I suppose that if you say something in public then it's in the public arena. I thought that the grant info was generally known.

    I have witnessed other things, with the main players at conferences. I was shocked at the time that they expose themselves in such a way when they are so vulnerable to being overheard and perhaps misinterpreted.
    On both occasions the incidents made more sense later on as the story unfolded. The image of the chilly white coat scientist isn't quite true is it, They are just like the rest of us. There was a lot going on at the time and i didn't want to add fuel to the fire. It's all in the open now as it was some time ago.

    Ahh I'm not too good at the whole tech thing here, and as I spend most of my time in bed after work I'm not terribly consistent with posting. If anyone else would like to start the thread I'd be delighted. I didn't realise Dr Judy was giving more talks.

    I felt very confident leaving the hotel that day. I think we are seeing such a lot of heat and fire, but perhaps most of it is blown up. I'd like to think so. I'd love to know if the new possible institution has a clinic, that would be the icing on the cake.

    One more thing, which is very important to some in the UK. An attendee asked about samples that had been taken from patients, and said that so many were anxious about where these samples were and what would happen to them. Dr Judy said that (paraphrasing here) she will have access to them. No timeline was given. I expect a lot will depend on her coming situation. If Ian is about he might confirm this as people are on tenderhooks about this I'm sure.

    Re the above, Although I could hear Dr Judy easily most of the time, the people asking questions were hard to hear at times which meant that the conversation sometimes sounded one sided and didn't always make sense.

    Don't think the fat lady is singing yet!

    Paddy
     
  10. ukxmrv

    ukxmrv Senior Member

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    Thank you Paddygirl for attending the talk and writing about it here. Hope you don't crash too much!

    Any news on when some of the UK work will be published? I remember that Dr Mikovits presented some of the data at a conference on the Ashford 50.

    Please don't worry about an answer if it was not mentioned. Please rest up.
     
  11. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    There's no agreement on causation, that's for sure, but we do know that a substantial enough amount of the pathology is neurological and immune that it can certainly be termed a neuro-immune disease. Dont know where you got that it isn't.
     
  12. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I would be that they have not been published because of bias against bona fide ME research. This was the reason Judy has been given and it certainly is consistent with the whole history of ME science.

    HGRV has 'human' in it, but that doesn't mean every human has it, just as every human doesn't have HIV. They're exogenous. Is there something I'm missing? Do you have a cite where she says they're endogenous?

    What you say about the epidemiology is very interesting. All i know of the subject is what Cheney said in Osler's Web that it looked like an incidence curve for a virus; very slowly gaining steam and then exploding and then slowly coming down after the 'low hanging fruit' had been picked. Can you explain some more?
     
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  13. Mya Symons

    Mya Symons Mya Symons

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    Great article Cort. I am really angry and disappointed right now. Your right. I think this whole debacle gave us all a worse reputation then we hadbefore. Further, Dr. Peterson was pushed out and he could have been on to something. I am left wondering if it was Dr. Mikovitz's ego that made her not want to admit to being wrong or was she really that sure of herself or did she get too involved with patients and did not want to let them down?

    There is one thing I still don't understand. Someone stated that Dr. Mikovitz might move on to do more research on XMRV in Canada and then she was already hired to do so. Why would they do this? Do they still think there is a chance that a retrovirus is involved? Why? What is it that I am missing here? I am too tired to read over all the posts now. Sorry if someone already explained this.

    PS Just because I do not share your view points this does not mean I am "the enemy." Please don't tell me what a big jerk I am. I am not in the mood to put up with it tonight. Thanks.
     
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  14. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I too agree with citybug. I understand you want to support Annette, but this is too much and at the worst possible time.

    You may recall that I submitted to you a blogpost from my blog, such that it is, that was critical of CAA. You said that it was inappropriate to put it out as an article because it expressed a negative opinion about an organization (CAA) and people (McCleary and Vernon).

    This article of yours is not the first I've seen from you that either pumps up CAA or tries to kick non-CAA researchers when they're down. You are acting hypocritically.

    Who is this unethical NIH grant reviewer. I really think you have an ethical obligation to report this person to NIH, and also to ME patients so that we can ensure that this unethical behavior does not continue (since, if history is a guide, NIH will do nothing to stop unethical baises and behavior against ME research).
     
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  15. santi

    santi

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