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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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I am not confident of the petition site. While I signed it, there were "red flags" that made me nervous. I only want the best for Justina and her family.
The problem is all our information is coming from the Pelletier family, and none from the hospital or the child protective services, because of privacy constraints. We don't know if the Pelletiers are truly abusive or not.
Kids are taken away from their families all the time. We just don't hear about it because the parents don't often have the smarts to construe the situation politically and take it to Glenn Beck. This situation has become a rallying cry for the Christian Right in the US, which is using it as the proverbial political football.
This is not to say that the situation isn't deeply disturbing. Everyone who has kids reacts to this story with deep fear. We identify strongly with the Pelletiers. We think that they are just like us.
But what if they aren't?
Agreed. I'm neither conservative nor Christian, but I think as a group they do get often mischaracterized currently. Glenn Beck and the Tea Party do not represent reality.Individuals who identify with "the Christian Right in the US" have helped pay for my private medical bills, associated expenses, and court costs. They have sometimes fed me and even bought me clothes. I would most likely be dead without their love, compassion, and financial assistance.
Not to mention that they would not take into account contradictory medical opinions, nor allow for a second opinion from a qualified doctor. And "Dutch neurologist" is quite a red flag as well, in my opinion They dispute the diagnosis of mitochondrial disease partially on the basis of lack of a muscle biopsy, despite the older sister having evidence of mitochondrial dysfunction in a muscle biopsy, and mitochondrial disease being very much genetic, yet also won't order such a biopsy to prove the issue one way or the other.The red flags here for me are "somatoform" and "resistance", "gag orders", "non-compliance" and all these terms that are now being used in medical abuse, police abuse, political abuse, coprorate abuse as a means to disempower people, and to make people either fearful of, or used to, this disempowerment.
I did it too. I would say it took less than 30 seconds.I hope everyone here is going to CALL THE JUDGE, as per the post above.
I just did, and it was an easy 30 second phone call.
The woman who answered took my name and my message, and thanked me for the call.
"
What I don't understand is how did the Boston Children's Hospital doctors get to completely dismiss the original diagnosis of mitochondrial disease by the the Tufts doctors? AND why didn't the Tufts doctors put a BIG fight about this? It seems like they should have stepped in immediately to rescue THEIR patient?