Justina Pelletier to testify in Congress, pushing for new law

[natasa778]

West Hartford teenager Justina Pelletier met with Congresswoman Michele Bachmann Wednesday in Washington to push a new law in her name.

Bachmann has introduced a bipartisan bill nicknamed “Justina’s Law” that would ban federal funding for medical experimentation on children who are wards of the state.

“She’s now free and the purpose of Justina’s law will be to make sure this never, ever, ever, happens again and Justina hit it out of the park when she spoke to numerous members of Congress today to ask them to support Justina’s law,” said Bachmann

Pelletier says she was mistreated and the subject of medical experimentation at Children’s Hospital in Boston, while in the custody of the State of Massachusetts.

Bachmann says several hospitals involve children in research that presents great risk, sometimes with no benefit to the child.

“I just want the law to be passed: Justina’s law,” said Pelletier, sitting next to Bachmann Wednesday.

Bachmann says Justina received a standing ovation when she addressed about 70 members of congress during a lunch briefing.

“We know that this is happening all over the country in all 50 states, that children who are designated wards of the state, are having medical research done on them that may not have any direct benefit whatsoever to the child and in Justina’s case she was made paralyzed by this medical research,” said Bachmann.

The teen hopes to testify before the entirety of congress in September

Read more: http://foxct.com/2014/07/16/justina-pelletier-pushes-law-in-washington-d-c/#ixzz37hzBEX4u

 

[Iquitos]

Now why can't we get an ME patient an audience with Congress, like this???

 

[Valentijn]

Now why can't we get an ME patient an audience with Congress, like this???

Because adult ME patients never get involuntarily committed to psychiatric institutions in the US. And because the children who get committed have families who are under pressure similar to Justina's family. They had to defy a court-order and completely lost custody in the process. It takes some serious balls and maybe a little bit of crazy to go that far.

In Justina's case there was also the issue of the hospital using her for a research project without her or her parents' consent, and that is what the congressional attention is focused upon.

It also helps that she has a 100% biological diagnosis from a very respected institution. We get "chronic fatigue syndrome" in the US, which is not well-recognized as being purely biological, even though the research is pretty definitive.

 

[Little Bluestem]

I am amazed that she is able to do this after all that she has been through. What a trooper!

 

[Iquitos]

Because adult ME patients never get involuntarily committed to psychiatric institutions in the US. And because the children who get committed have families who are under pressure similar to Justina's family. They had to defy a court-order and completely lost custody in the process. It takes some serious balls and maybe a little bit of crazy to go that far.

In Justina's case there was also the issue of the hospital using her for a research project without her or her parents' consent, and that is what the congressional attention is focused upon.

It also helps that she has a 100% biological diagnosis from a very respected institution. We get "chronic fatigue syndrome" in the US, which is not well-recognized as being purely biological, even though the research is pretty definitive.

As you may realize, that was a rhetorical question. But I don't agree that our lack of an audience with Congress is "Because adult ME patients never get involuntarily committed to psychiatric institutions in the US."

Then why doesn't Ryan ONeill(???last name) get an audience with Congress? He was a minor when he was taken from his family by Child Protective Services (or their equivalant) and denied contact with his parents and eventually with his grandparents. In fact, Mrs. Whittemore did testify before Congress a long time ago, about the need for research funding for this disease but nothing was done about it.

And the laws are in place that could allow an adult American to be put in a mental hospital for believing she has ME/CFS. Since half of all American doctors don't believe it's a physical disease, I continue to be afraid of encountering just such doctors, and I suspect there are others who are afraid, too. I can see myself having to go to the emergency room for something and then being trapped in the "it's all in your head" prison when I try to get accomodation for my illness.

To a degree, I've already experienced that lack of accommodation. In the hospital with a cast on one broken leg and my dislocated shoulder in a sling on the opposite side of my body, I was asked to stand and pee in a cup over and over and over all night long, while they pumped saline into me in the arm without the sling. Imagine trying to do that with three limbs immobilized, extreme exhaustion from the illness and the stress of it all, plus the pain of the bruises caused by my fall. Perhaps fortunately for me, the "sports medicine" doctor that ordered these "treatments" without ever actually seeing me believed that ME/CFS is just female hypochondria but didn't see that as a reason to involuntarily commit me. It's within the realm of possibility that if the emergency room doctor had been a psychiatrist, it might have turned out differently.