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To anyone who thinks those of us with food allergies should just suck it up and eat what everyone else is eating, don't be so overdramatic -- here's why I INSIST on knowing what's in that casserole before I dig in!
Thursday, January 26, 2012
Wednesday, January 25, 2012
Get Well From ME » 7. What To Do When Your Friend Has An Invisible Illness
"People with ME are usually the most conscientious and highly motivated people I've ever met. We honestly, desperately want to do stuff. It's not like when your back is turned, we stop "pretending to be ill" and just get on with fun things and enjoy an easy life! No, it's the complete opposite. When you see us, we are mustering all our energy to be as normal and energetic and look as healthy as we possibly can – and as soon as you're gone, we collapse"
Monday, January 23, 2012
The Kafka Pandemic: Three things people don't know
"If you cannot explain the facts of late-stage disease, then you cannot explain the disease. If your explanation does not fit the facts, then it fails"
Good points! One of my doctors, after I presented him all the symptoms that proved it wasn't depression, told me "nothing you said made sense". Of course not. He was trying to sledgehammer these symptoms into his desired diagnosis and the stuff I was telling him wouldn't fit. In his arrogance, he couldn't possibly be wrong, therefore I had to be too stupid to know what my own symptoms were.
Wednesday, January 18, 2012
Monday, January 16, 2012
Sunday, January 15, 2012
Help Wanted: Creative Thinkers
"For creativity is not just defined by untethered, high-flying talent that flashes like lightning then fades into the darkness. It requires sustainability. It includes, to overlapping degrees, risk taking, genre-mixing skill, an aptitude for improvising and -- above all -- passion. Experts make a distinction between everyday creativity and big-C Creativity, and Wilson has the latter in spades.
"Big-C creators do not necessarily think differently than the rest of us, but they are more open to new ideas, acquire some degree of domain expertise and are highly motivated to pursue an idea until they have realized its creative potential," says psychologist and creativity expert Dean Keith Simonton."
* * *
Unfortunately, most scientists are given to linear thought and aren't all that creative. Some find it very hard to think outside the box.
And then there are those of us patients who lack the knowledge to know where the boundaries of the box are, and wander up to the scientists to ask "would this work?" I know just enough about science to make sense of what I'm reading. Therefore, I legitimately don't know whether something could work when I make such a connection. It just, to me, seems logical. Sometimes the science geek will have a rational explanation for why it won't work, and other times he'll ponder and agree that it just might be possible.
What CFS needs is that rare combo of a scientist with enough backbone to buck the system, enough creativity to think outside the box, and the intelligence to make the crazy theory workable. Not another one who takes the easy way out and concludes that fatigue=depression, next case!
CFSAC minutes now available
The minutes of the November 8-9, 2011 (US) CFS Advisory Committee
(CFSAC) meeting are now available:
November 8, 2011 (PDF):
http://1.usa.gov/yrAQMe i.e.
http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac_min-11082011.pdf
November 9, 2011 (PDF):
http://1.usa.gov/xZdUwS i.e.
http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac_min-11092011.pdf
(CFSAC) meeting are now available:
November 8, 2011 (PDF):
http://1.usa.gov/yrAQMe i.e.
http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac_min-11082011.pdf
November 9, 2011 (PDF):
http://1.usa.gov/xZdUwS i.e.
http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac_min-11092011.pdf
Saturday, January 14, 2012
The Sleeping Sickness • Damn Interesting
Beginning as early as 1916, and continuing well into the 1920s, an unusual and disturbing illness devastated millions of people throughout the world. It arrived in the shadow of the 1918 Spanish Flu epidemic– which killed an estimated fifty million people worldwide– so it has been largely overlooked by history despite the fact that it took the lives of over a million people, and left countless others frozen inside unresponsive bodies.
Young people, particularly women, were the most vulnerable to the disease, though it affected people of all ages. When an individual was stricken, the first signs were typically a sore throat and fever accompanied by a headache; but these discomforts soon developed into more alarming problems such as double-vision and severe weakness.
* * *
The nurse in the movie "Awakenings" comments to the doctor that she doesn't think she could deal with losing 30 years of her life. I've come to realize that I basically have a 10-year gap in my memory. I was healthy in 2000, and although I don't question the accuracy when I see the date 2012, I don't come up with that date myself without really thinking about it. Instinct tells me that it should be 2001, maybe 2002.
Because doctors repeatedly refused to listen to me when I told them what the specialists recommend, I've lost 10 years of my life. It's not something where I'm allowed to say "I don't think I could deal with it". It's my reality and I have to deal with it.
Awakenings - based on a true story
We realised we must be onto something
Dr Andrew Church
The first clue was that many of the patients had had a sore throat before they were struck down with the illness.
So the two doctors started looking for evidence of bacterial infection - and particularly streptococcus bacteria which is a common cause of sore throats.
"It was amazing really and very exciting, when the first results came back," said Dr Church.
"We got first one, then two, then ten...then all the patients had the same result. So we realised we must be onto something."
They had discovered evidence of a rare form of streptococcus bacteria in all their patients.
The bacteria that can cause a simple sore throat had mutated into a much more severe form and triggered the attacks of encaphilitis lethargica.
Dr Andrew Church
The first clue was that many of the patients had had a sore throat before they were struck down with the illness.
So the two doctors started looking for evidence of bacterial infection - and particularly streptococcus bacteria which is a common cause of sore throats.
"It was amazing really and very exciting, when the first results came back," said Dr Church.
"We got first one, then two, then ten...then all the patients had the same result. So we realised we must be onto something."
They had discovered evidence of a rare form of streptococcus bacteria in all their patients.
The bacteria that can cause a simple sore throat had mutated into a much more severe form and triggered the attacks of encaphilitis lethargica.
Awakenings (1990) - IMDb
"The victims of an encephalitis epidemic many years ago have been catatonic ever since, but now a new drug offers the prospect of reviving them."
Several people have commented on the similarities to Myalgic Encephalomyelitis. Watching it on TV now.
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