To Suffering, Add Anger: Llewelleyn King Blog Post

urbantravels

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We previously discussed a blog post by Llewellyn King called "The Awful Disease Washington Forgot" in this thread:

http://www.forums.aboutmecfs.org/showthread.php?7701-The-Awful-Disease-Washington-Forgot

It looks like he got some feedback from that post; here is a new post that just appeared called "CFS: To Suffering, Add Anger."

http://whchronicle.com/2010/10/cfs-to-suffering-add-anger/

I’ve been walking on the sad side. My mailbox is jammed with dozens of heartrending e-mails from sufferers of Chronic Fatigue Syndrome (CFS); a terrible disease that is little understood, little researched and hard to diagnose.
...

Breaking down the e-mails, I find these commonalities:

Anger at the CDC and, to a lesser extent, the National Institutes of Health and government in general.

Tremendous suffering and horrendous problems with affording treatment; frequent misdiagnosis, as doctors use a “dustbin” approach that discards all the possibilities until they get to CFS.

Anger at the media and others for not taking CFS seriously enough.

The knowledge, with a cure rate of between 4 and 8 percent, that they are awaiting the inevitable in huge discomfort. They are on medical death row.

Sufferers describing themselves as “living corpses.” Alone with their suffering, many commit suicide.

I’m not a medical writer. Writing about medicine has never interested me. But in a career of writing for newspapers, spanning more than 50 years, I’ve never received so much mail that has so consumed the thought process and torn at the heart.

There is a ghastly disease out there that cries out to be taken seriously, to get proper attention in the medical world, and to be prioritized along with the other big diseases claiming research dollars.
 

acer2000

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Guys this is a very thoughtful and caring piece. If you read it, you should post comments thanking him for covering this issue. We need to encourage journalists to write more pieces like this that shed light on our situation, and positive comments can only help encourage this.
 

Berthe

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Guys this is a very thoughtful and caring piece. If you read it, you should post comments thanking him for covering this issue. We need to encourage journalists to write more pieces like this that shed light on our situation, and positive comments can only help encourage this.
Done already!

Although with foggy brain and some errors:worried:

Love,
Berthe

http://www.onwilliglichaam.blogspot.com
 

urbantravels

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You know what's so refreshing to see, once in a while? Plain old ordinary compassion. "People are suffering terribly and we ought to be doing better by them." THANK YOU.

It's nice to be reminded once in a while that compassion exists in people with no particular axe to grind about the disease, especially now while we're in this lull of nothing new coming out except admonishments that nothing is proven, patients shouldn't get too excited, science takes time, etc etc.
 

Enid

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Everything that aids has to be good- from a one who was in just basic survival mode.
 

Sasha

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I've posted an appreciative comment (awaiting moderation) - I agree that when we get good coverage like this, we should post comments praising the writer and encouraging them to do more. There is such an amazing story for any investigative journalist just waiting to be plucked off the tree here...
 

shannah

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According to Heidi Bauer at CFS Chronicles:

http://cfschronicles.blogspot.com/s...d-max=2011-01-01T00:00:00-08:00&max-results=6

Mr King did a show about ME/CFS on Friday night. She writes:

"The White House Chronicle's CFS episode aired this past weekend. The full episode will be posted on the web site at whchronicle.com.
Please watch, send him a note of thanks and be on the look out for other media personalities who are bursting our bubble."

http://whchronicle.com/

Looks like it's up there now.
Her piece is well worth reading.
 
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According to Heidi Bauer at CFS Chronicles:

http://cfschronicles.blogspot.com/s...d-max=2011-01-01T00:00:00-08:00&max-results=6

Mr King did a show about ME/CFS on Friday night. She writes:

"The White House Chronicle's CFS episode aired this past weekend. The full episode will be posted on the web site at whchronicle.com.
Please watch, send him a note of thanks and be on the look out for other media personalities who are bursting our bubble."

http://whchronicle.com/

Looks like it's up there now.
Her piece is well worth reading.
Here's the link to watch the episode: http://whchronicle.com/wp-content/plugins/simple-flash-video/video.php?height=320&width=490&file_name=http://whchronicle.net/upload/files/flv/WHC_2029.flv