Hillary Johnson GONE?

flybro

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Why has Hillary Johnson shut down her blog?

Taken from here

[FONT=arial, helvetica][FONT=ariel, helvetica]A letter to those who have been supportive of my blog posts in the past several months:

Thank you for your hundreds of comments. I hope those who've read these comments have found them as interesting and insightful as I have. I have enjoyed the process tremendously and have felt a delightful sense of community.

I'm taking time off from blogging to attend to some long-negelected projects and won't be posting for a while. I wish you all happy holidays.

A complement of worthy scientists inside and outside government appear to be "on board." The tragic events of the last 25 years cannot be denied and should not be forgotten, yet there exists now a reason to feel optimistic--however guardedly--about the future.

The French neurologist, Jean-Martin Charcot (1825-1893), famously noted, "Disease is very old, and nothing about it has changed. It is we who change, as we learn to recognize what was formerly imperceptible."

In the case of an epidemic disease that was ignored for a generation, Charcot's words have particular resonance.





Hillary Johnson
December 7, 2009



Is this real? Now! Why?:confused:[/FONT]
[/FONT]
 

CBS

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Sunshine!

I look forward to the day that I too can step away from the topic of CFS for a time (at least to some degree). For all of us that day is closer because of Hillary Johnson.

I do hope that right now she's resting on a remote beech and is at peace with everything she's done to help.

As Judge Louis D. Brandeis said, "Sunlight is said to be the best of disinfectants (now don't be an IDIOT - you know you'll crash if you push too hard, and take your meds)."
 

Summer

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I would go for the beach too, but I know she wants a book deal, and I hope this means she got it. She is a journalist, and her passion is writing, and she can always write on the beach! :D


I look forward to the day that I too can step away from the topic of CFS for a time (at least to some degree). For all of us that day is closer because of Hilary Johnson.

I do hope that right now she's resting on a remote beech and is at peace with everything she's done to help.

As Judge Louis D. Brandeis said, "Sunlight is said to be the best of disinfectants (now don't be an IDIOT - you know you'll crash if you push too hard, and take your meds)."
 
K

_Kim_

Guest
She probably finally got her XMRV test results. Interesting that she quotes Charcot. He was brilliant, but at the same time, a real jerk. Used to scare the wits out of MS patients to see if they were faking it. . .
I was thinking the same thing about her getting XMRV results. Also noted that she's taking some time off from blogging, not that she has closed the site forever. I'm still curious about her reasons for taking a pass on testifying at the CFSAC meeting in October.
 
K

_Kim_

Guest
I just wish she hadn't deleted her blog posts and the corresponding comments. I'm not able to read much due to my ME/CFS and was hoping to go back to her site to catch up. :(
marie, I just tried to get in from the back door and can still access the blog.
 
G

George

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I think she knows that the future is in safe and good hands. She's spent 20 years advocating and I think that she has seen the goal to the finish line. We aren't on the inside but she is and I can't imagine she would take a vacation unless she knew the goal had been reached.
 

fresh_eyes

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I think she knows that the future is in safe and good hands. She's spent 20 years advocating and I think that she has seen the goal to the finish line. We aren't on the inside but she is and I can't imagine she would take a vacation unless she knew the goal had been reached.
This is reminding me of MLK Jr.: She has been to the mountaintop, and she has seen the promised land??? God, I hope so.
 

mezombie

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Kim and Andrew

Kim, thanks so much for showing me the "back door" to HJ's blog!

Andrew, I agree, perhaps we should contact her and see if she's willing to keep her blog in plain sight on her website.
 
K

_Kim_

Guest
Kim, thanks so much for showing me the "back door" to HJ's blog!

Andrew, I agree, perhaps we should contact her and see if she's willing to keep her blog in plain sight on her website.
marie, maybe you should contact her after you copy/save/print the pages you are interested in reading. Don't know how long she will keep them up there for.
 

Cort

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I think she knows shes gone too far. I believe she's way over the top with the CAA- if anyone looks closely at what she writes on that topic its needlessly inflammatory, much of its flat out wrong and it mixes fact and fiction. It's basically trashy stuff - I know thats going to upset alot of people who love her because of Osler's Web but I don't think she's even close to being a responsible journalist anymore.

Her piece on the New York Times - obviously under the influence of their editors = was fantastic - she can still bring it like no one else when she's given the right circumstances. The rest of it usually makes my stomach squirm. That's my take!

You can see why I feel that way in my blog to come out in the next couple of days.
 

CBS

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HJ

I think she knows shes gone too far. I believe she's way over the top with the CAA- if anyone looks closely at what she writes on that topic its needlessly inflammatory, much of its flat out wrong and it mixes fact and fiction. It's basically trashy stuff - I know thats going to upset alot of people who love her because of Osler's Web but I don't think she's even close to being a responsible journalist anymore.

Her piece on the New York Times - obviously under the influence of their editors = was fantastic - she can still bring it like no one else when she's given the right circumstances. The rest of it usually makes my stomach squirm. That's my take!

You can see why I feel that way in my blog to come out in the next couple of days.
I don't know enough about all of the history here to say one way or the other but I do know that my least reasonable, least rational behavior (and at times I have been pretty unreasonable) has come when I've fought with everything I have and I'm exhausted. If that is the case and what she needs is a break, I really do hope she's on that beach!

Shane
 

Cort

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For sure. Exhaustion breeds anger. I actually think its very easy to get into a kind of an anger loop; it just feeds on itself. Its certainly happened to me at times. without reference to Hilary I have wondered if what happens in ME/CFS patients brains somehow affects the aggressive parts of them. For me irritability or touchiness is part of the wound up, wired but tired aspect of this illness' its been an very noticeable aspect of my personal experience with this illness.
 

Samuel

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My feeling about her fiery blog posts is that they are fun to read for many of us, myself included. That probably helps to sell thousands of copies...

...but I want her to sell millions of copies! I want it turned into the next Erin Brockovitch in every theater or a documentary.

Could it be that her adopting a restrained style would help to achieve that? She might want to keep the politely cautious upper middle class literary and political communities interested. No, I'm not saying hold back on the truth. I'm just talking about style.

Osler's Web appears to be a treasure to be handled carefully. Then again, maybe Hillary has thought about all of this and came to the conclusion that it is in our long-term interest to write fiery blog posts. Or just realized the opposite.

Just wondering and would be interested in others' opinions.

(For the record, given that this follows Cort's post, I'm not happy with the CAA. However, I don't know enough to comment on the substance of the CAA post on Hillary's blog.)
 

valia

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My feeling about her fiery blog posts is that they are fun to read for many of us, myself included. That probably helps to sell thousands of copies...

...but I want her to sell millions of copies! I want it turned into the next Erin Brockovitch in every theater or a documentary.

Could it be that her adopting a restrained style would help to achieve that? She might want to keep the politely cautious upper middle class literary and political communities interested.

No, I'm not saying hold back on the truth. I'm just talking about style.

Osler's Web appears to be a treasure to be handled carefully. Then again, maybe Hillary has thought about all of this and came to the conclusion that it is in our long-term interest to write fiery blog posts.

Or just realized the opposite.

Just wondering here and would be interested in comments.

(For the record, given that this follows Cort's post, I'm not happy with the CAA. However, I don't know enough to comment on the substance of the CAA post on Hillary's blog.)


Hello Samuel BEDBOUND with NO DOCTOR,

That sums it up for me

No need to ask how the CAA has helped you



I wish you the very best.
 

JustJack

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Scrapper

She is sure a scrapper.

Frankly, even if you dispute some of her "facts", she has put herself on the line, a david vs a goliath. For that, I am proud, and both support and applaud her for her strength, honesty and fortitude all this time.

Any fight with CAA is not necessarily where energy should go, but if you have seen what she has seen and been where she has been, there is no way to close that door of knowledge once it has been opened, you can never go back.


Just an opinion,
JJ
 

flybro

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I wish there were millions of Hillary Johnsons

If there had been more brave and courages people like HJ, perhaps there would have been more books like OSSLERS WEB.

Perhaps if that had been the case, this whole debarcle would have progressed with far less deaths.

I think she deserves an ME/CFS Advocacy Award, if there was such a thing.