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.

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.




Tuesday, January 10, 2012

Reasons ME advocates cannot unilaterally discard the term CFS


For anyone who cannot see my comment on Ange's Blog (to which I urge as
many as can manage to contribute):

[I hope that Ange and readers, here, will appreciate that my post is not
with any negative hostility to her conclusions but as a reaction to the
points that she quite properly raises for consideration. I am grateful
to her for providing the propositions and an intelligent forum in which
to discuss them.]

I am pleased to see that, after her, "7 Reasons ME advocates cannot
unilaterally discard the term 'CFS' (or 'ME/CFS') just yet!"
(, 10 January 2012 -,
Angela Kennedy says that she is not arguing in favour of keeping CFS or
CFS/ME as synonymous with M.E.

There are two things, in particular, that concern me about the time
before separation that she (and others) would approve: (1) There
probably never will be a time when the individuals/institutions she
names, elect or are persuaded not to prefer CFS or use CFS/ME after 25
years of clinging to it, especially if they have a career interest or
profit motive in doing so. (2) Enduring CFS or CFS/ME when it is
scientifically, logically and morally untenable because opposing it may
"lead us into bigger problems" and only using, "the term ME on its own
whenever possible," is tantamount to tolerating institutionalised bullying.

My view is that, it should never have been necessary, is long overdue
and until we separate M.E. from CFS, we shall make no progress no only
for M.E. sufferers but anyone else caught up in this indiscriminate bundle.

Best wishes
drjohngreensmith@mecommunitytrust. org
Dr John H Greensmith
ME Community Trust. org

* * *
Dr. Dowsett has noted that when ME was changed to CFS in 1988, all connection to the prior research into the disease was lost.  And the same will happen when the name is changed again.  Yes, there's a boatload of garbage out there about stress and depression, but there are also good studies about post-exertional relapse, etc., which are filed under CFS and shouldn't be lost.

Monday, January 9, 2012

Exercises for people in pain

How to take America back from ‘Greedy Bastards’ - books -

 Although he could move in with his sister, he doesn't want to be a burden, and he knows that she can't afford to pay for his health care out of pocket any better than he can. So what choices does he have? He goes into the local bank and slips the teller a note. It demands $1—and health care.

This is not a fantasy, and the man wasn't crazy. He was thinking clearly about a crazy situation. Jail, he realized, was the one place where he could get health care without bankrupting himself and his family. "Because he only asked for $1," Yahoo! News reported, "he was charged with larceny, not bank robbery. But he said that if his punishment isn't severe enough, he plans to tell the judge that he'll do it again. His $100,000 bond has been reduced to $2,000, but he says he doesn't plan to pay it." Jail, he said, was the best of his bad options.

* * *

How many PWCs will contemplate that in jail, they could get three healthy meals they don't have to struggle to cook themselves, and someone else to do the laundry?

6 Ways to Look and Feel Better With Fibromyalgia