Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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The Patient Advocate on WPI-Peterson Institute opening

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by RustyJ, Aug 18, 2010.

  1. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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  2. Sasha

    Sasha Fine, thank you

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  3. VillageLife

    VillageLife Senior Member

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    maybe one day, places for treatment will be all over the world! Lets hope so.
     
  4. V99

    V99

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    Now remind me again which UK doctor tried to manipulate everyone into thinking the WPI didn't exist. Who said, very stupidly, that the picture was a drawing? No, don't bother, I know exactly who she was. What a fool.
     
  5. eric_s

    eric_s Senior Member

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    Lol. Somebody actually said that??
     
  6. V99

    V99

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    Yea, I heard about it on here. Won't say who, but she is well known in the UK fatigue world. What a muppet.
     
  7. floydguy

    floydguy Senior Member

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    I enjoy reading the Patient Advocate. Too bad we don't have more patient advocates like him!
     
  8. urbantravels

    urbantravels disjecta membra

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    There was a computer illustration (the professional term of art is a "rendering") of the building that was being widely used on the WPI web site and other publicity materials while the building was under construction. That's what you do when you don't have a completed building yet, pictures of construction sites are not that aesthetically pleasing.

    Did somebody use that as evidence that the WPI "doesn't exist"? That's pretty dopey. I'm glad to see pictures of the completed building finally.

    signed, used to have a career in architecture before becoming a full-time sick person
     
  9. eric_s

    eric_s Senior Member

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    I have another idea, after reading this.

    Someone could establish a website where they list that kind of statement or actions by doctors, scientists etc. and then point it out as wrong.
    Like for example "no XMRV in the UK" and then if the WPI releases it's hopefully positive UK study link to that.
    Like the websites where they debunk myths.

    It could be called "Weasel Watch" :D but probably a more serious name would be better.
     
  10. V99

    V99

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    Here is the page from Facebook:

    http://www.facebook.com/topic.php?uid=154801179671&topic=12698
     
  11. V99

    V99

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  12. urbantravels

    urbantravels disjecta membra

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    Wow. Just wow. One hardly knows where to begin.

    The "fake building" part is laughable enough. Yes, that was a rendering of a future building. Perhaps when everyone goes to enjoy the grand opening that can be written off as a mass hallucination? A $77 million building seems pretty real from where I sit, but no doubt I am vicariously participating in the hallucination.

    The rest of it - sheesh.
     
  13. Daffodil

    Daffodil Senior Member

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    some people just have no shame at all.
     
  14. Sunshine

    Sunshine Senior Member

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    Dr Esther Crawley. She described the WPI as a 'Cartoon' and not real.

    Dr Crawley is Medical advisor to AYME, where children go for advise and support.
    The same woman employed by the NHS who says CBT/GE cures 70% of people with CFS/ME.

    Dr Crawley was given 0.73 million for 'ground breaking research' using CBT in CFS/ME by the National Institute for Health research body.
    http://www.nihr.ac.uk/Pages/default.aspx

    Dr Crawley is involved in 3-day-cure for CFS/ME pilot trial using 'Lightning Process (LP)'.......... in children.
    (Cure is reached by saying 'No No No' when you have CFS/ME symptoms, and is yours from you local pyramid seller scammer for approximately 1,000+).

     
  15. V99

    V99

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    I guess she thinks proper ME docs can afford a Porsche
     
  16. Sunshine

    Sunshine Senior Member

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    WPI opening is the first real chance we've ever had to breathe a sigh of relief.

    Now we just need 10 in each country.

    The Whittemore's went to Capitol Hill a while back to lobby for more funding but were turned down, presumably until the XMRV replication studies are sorted out.

    I think America needs more than 1 WPI, simply not big enough to see the amount of people who will want an appointment.

    Meanwhile in the UK don't have a WPI, but we so have NHS PACE & FINE trials due to be completed by 2012.

    The aim is to cure CFS/ME over the phone, via nurse encouragement and the use of an activity diary and exercise.
     
  17. anciendaze

    anciendaze Senior Member

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    Shouldn't someone mention that CDC went out of business some time back, and warn about medical advice based on Internet fraud? ;)
     
  18. Rrrr

    Rrrr Senior Member

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    i can't access the patient advocate's latest post. it disappeared.... help?
     
  19. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    You are correct. I think this has happened before. Should be back soon. Maybe a hosting issue.
     
  20. *GG*

    *GG* senior member

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    Sad state of affairs in the UK, so glad I do not have this condition in your country.
     

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