Mikovits in London May 2011, also Meirleir, Chia, Montoya, Bell

Kate_UK

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Sasha

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That's quite a line-up! I hope it will lead to some helpful coverage in the press - we can but hope...
 

August59

Daughters High School Graduation
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It would be nice to get a similar line-up at conference in the US as well. Or, a Live Webinar would be sufficient. There wouldn't be a reason for having it in London, instead of US would there? Didn't know if there might be something they could discuss there, but not here. Could be that it is a good central location!
 

leela

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It would be nice to get a similar line-up at conference in the US as well. Or, a Live Webinar would be sufficient. There wouldn't be a reason for having it in London, instead of US would there? Didn't know if there might be something they could discuss there, but not here. Could be that it is a good central location!
Could be they *really* need a fresh POV in the UK!!
But I agree, I'd want to attend a talk with that excellent line-up of heroes.
 

Crappy

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I'm with you August59.

If they are convinced this illness has a significant presence in the population, it seems using the Internet to communicate on a grand scale would be ideal.

So far it seems they almost fear exposure, maybe they just haven't come into the 21st century. Maybe younger physicians will use this medium more?

I just wish they would do anything short of lighting themselves on fire to get noticed. I mean SH*T! AIDS was discovered in 1984 and had a major motion picture Philadelphia, with Tom Hanks and Denzel Washington by 1994. Nine years is slow.

Awareness of this illness began close to the same time, What the heck is taking so long? What does AIDS have that we haven't got? No sexual danger? I don't get it. Why are we left to rot, while AIDS garners all the funding and attention? Are political leaders concerned about contracting AIDS from their promiscuity? but they have no fear of CFS/ME?

Talk about discrimination.

Thanks for the post Kate_UK.
 

ukxmrv

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One of the big differences is how well PWAIDS were what a great network there was.

When HIV and ME hit my group of friends, there were immediately groups that set up (under the Gay Rights banner) to work on HIV/AIDS. My friends who had HIV were out of bed campaigning. Those if us with ME were in bed very sick.

Friends with HIV (before there was tx) campaigned right up until the bitter end. Other gay and straight people helped them. Huge rallies and marches.

With ME, it is very unusual for our friends and family to campaign. There are some of course, marvelous individuals! - but very few.

The people behind Invest in ME are awesome. They started as a few parents of children with ME and decided to hold a conference. Every year it has grown. No reason why any group elsewhere in the world could not do the same. I'm deeply grateful to all the parents and families out there trying to help us.
 

SilverbladeTE

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AIDS kills quickly and by two main methods, so it's pretty damn obvious and scary
that's why work was faster on it
BUT was dreadfully slowed down by bigotry and rabid religious nutcases, plus some parts of the insurance and psychiatric industry
some psychs were STILL claiming it was "Gay related STRESS disorder" until it had claimed vicitm #110 iirc?

unless ME starts killing folk fast, or becam eairborn, or infected a lot of rich/powerful people, or something really makes a panic
no one will care much
this is a disease of "stupid post menopausal women, malingerers and weaklings..."
because that's how it has been DELIBERATELY spun in a very evil campaign of propaganda, so we can be made invisible and left to die out.
 

August59

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I believe there are a significant number of rich/powerful people that have ME/CFS. They on the other hand, and purposely, steer away from a diagnosis of CFS unless they are in a house-bound and bed-ridden state. They are going to try and avoid the stigma associated with the disease for numerous reasons such as employment, health insurance, social status and worst of all public perception. Getting a physician to avoid the CFS diagnosis is defintely not a problem.

Due to the "It's all in their head" sign that has been stamped on our foreheads, CFS is in some ways much worse than AIDS. The term "CFS" has, is and always will cause problems in one way or another (social stigma, clinical denial and research funding). I think Dr. Judy stated that when they were trying to name the "WPI", she had to "lose CFS" because of negative effect on fundraising and it is still a problem.

We could probably start killing over and have a mass epidemic, but we would still have "It's all in their head" stamped on our forehead laying the coffin!!! It's a cruel world.

Forrest Gump - My momma always said, "Life was like a box of chocolates. You never know what you're gonna get."
 

Enid

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Also (just advised) Invest in ME (the best) have a Pre-Conference evening - "Science, Politics and ME" - Speaker is Hillary Johnson (Oslers Web) and Dr Ian Gibson (long term advocate). Coming at this time with all the research and findings in the public domain at last I hope it hits the headlines.
 

August59

Daughters High School Graduation
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Also (just advised) Invest in ME (the best) have a Pre-Conference evening - "Science, Politics and ME" - Speaker is Hillary Johnson (Oslers Web) and Dr Ian Gibson (long term advocate). Coming at this time with all the research and findings in the public domain at last I hope it hits the headlines.
Ooooh!! Would like to be there!
 

pictureofhealth

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Glad to see Ian Gibson has resurfaced. I'm wondering whether he has been a driving force behind the resurgence of interest in ME amongst UK MP's?
 

ukxmrv

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Cigana,

Ian Gibson stood up and made an annoucement at last years Invest in ME conference about this. I think he is working with Kevin Short and maybe Greg Crowhurst.
 

cigana

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Thanks uk. It's almost inconceivable to me that someone like him is actually trying to do something so positive, I'm very thankful to him.
 

Enid

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Very best we have UK wise - know the real thing - ask the real people - resist (obviously) any psychosomatism - engage with the best here only. That's Invest in ME.
 

pictureofhealth

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Its such a telling list isn't it? No major scientists/medics from the UK. Just a total lack of engagement. (Hopefully though Vance Spence from MERUK will make it?)