frozenborderline
Senior Member
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Not that we dont still do it, but point taken. It's generally acknowledged as cruel and criminalThere are none where it is legal to torture somebody.
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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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Not that we dont still do it, but point taken. It's generally acknowledged as cruel and criminalThere are none where it is legal to torture somebody.
I'm hoping someone will be willing to post this on reddit or some other forums , or facebook
Well there are a couple people in this community who also have HIV/AIDS , and one of them was a member of act up before having me/cfs I believe. Terri wilder.I wonder if we could engage the HIV/AIDS community and get them to help us get the word out? Use the shared parallel of suffering over decades.?
Well, I'm not aware of any other disease with such a serious discrepancy between disease burden , measured in recent studies , and actual funding. There are bad disease that are underfunded , but I'm actually not aware of any cases as extreme as me/cfs.Sadly, we have to realize that there are plenty of other illnesses, diseases, etc., that have people living in the same depths as we experience.
That isn't exactly what I was saying.have to agree with @lenora . Yes, our disease cases immerse suffering, but other diseases are no picnic either. I am uncomfortable with the- we are suffering the most, so we deserve the most- narrative, even if we do suffer the most. All people deserve care. Allocating care on the basis of suffering serves only to exclude those who are deemed unworthy. We are all worthy.
Yes I know there were earlier outbreaks. Tahoe was what turned the disease into a named syndrome with ICD code and everything , in the US
I don't think that all or most of the patients were particularly wealthy. A lot of fancy resort towns and places have regular residents that don't have second homes there that may be less wealthy. And it was a long time ago when housing prices were different.Actually the ME/CFS patients in Tahoe and Incline Village are millionaires, since you can't afford to live there if you are not wealthy. I suspect that their attorneys helped to get the ICD code,
As we all know, ME/CFS goes far past "fatigue" with many symptoms. Thus the "Yuppie Flu" comments in 1984 when they had the large breakout of this disease. And thus the worse one suffers from it, the more they might think of ending it, since constant loneliness takes 15 years off a person's life, as people who have studied its effects, this is a blessing, not a curse.
I have to agree with @lenora . Yes, our disease cases immerse suffering, but other diseases are no picnic either. I am uncomfortable with the- we are suffering the most, so we deserve the most- narrative, even if we do suffer the most. All people deserve care. Allocating care on the basis of suffering serves only to exclude those who are deemed unworthy. We are all worthy.
I think it's better to make common cause across illnesses. People with chronic illness, whatever that illness is, understand the world differently than healthy people. We know the importance of compassion and helping each other. It's the only way to survive these illnesses. We also know that anyone, anytime, anywhere can be struck down. That illness is more a matter of bad luck than personal responsibility. None of us bear blame for our conditions and we should not be treated as though we do. Health is a gift, not something you earn with hard work. Illness is a hardship to be carried together.
Yes, we need more advocacy. But lets do it through building connections, not separation.