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A Case for Chronic Denial by Hillary Johnson

Martlet

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I've come late to this thread but no less glad! Koan - like you, I don't usually talk about this but like you, I posted the XMRV news to my facebook wall. I am just so happy, after so many years, to see this being talked about and written about. :)
 
L

Luciebee

Guest
I've come late to this thread but no less glad! Koan - like you, I don't usually talk about this but like you, I posted the XMRV news to my facebook wall. I am just so happy, after so many years, to see this being talked about and written about. :)
I've remained silently watching all this...stuff...for years. I'm not a part of the Incline Village cohort, but did spend lots of time there in the late 70's and early 80's. I also worked as a nurse for many years and that could just as easily have been my entre' into this disease.

I've been silent because it's so much effort to make words, anymore.

I started a Facebook page of my own, and Hillary's article has now been my first post. Somehow, I seem to have friends there even though I'm pretty reclusive these past few years. This is important enough to make the words come back, if only for a little while.

Anyway, nice to meet you all. Many of your names are very familiar to me already. 'Bout darn time I said 'hello', huh?
 

MEKoan

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Welcome Luciebee,

Those were very nice words. We all understand how difficult it is to generate them!!!

Hey Martlet,

So far, none on Facebook seem to notice. I'm relieved and disappointed all at once. It's nice to have a place where this is not a factor. I value having a place where everyone is equally able.

I also wonder how many things are going on in the world that mean everything to someone else and nothing to me. What are they posting on their wall that flies under my radar...?

peace out,
Koan
 

MEKoan

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Marie,

I just want to come to your party, or is it a mixed state? I bet that's a mixed state!

Ok, I want to have a mixed state with you:

:D:eek::p:rolleyes::p:eek::D

You'd always be my first choice for a shared mixed state :eek::(:p

Koan
 

Marylib

Senior Member
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That is why I am not posting it to FB. My FB friends and family are mostly healthy, thankfully. And it doesn't really register.






Welcome Luciebee,

Those were very nice words. We all understand how difficult it is to generate them!!!

Hey Martlet,

So far, none on Facebook seem to notice. I'm relieved and disappointed all at once. It's nice to have a place where this is not a factor. I value having a place where everyone is equally able.

I also wonder how many things are going on in the world that mean everything to someone else and nothing to me. What are they posting on their wall that flies under my radar...?

peace out,
Koan
 

Sing

Senior Member
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Op-Ed piece on CFS and XMRV in NY Times

Just read an excellent long op-ed article by Hilary Johnson, author of Osler's Web, in today's NYTimes, though the article is dated October 21. Find it on the bottom of the Op-Ed page entitled: "A Case of Chronic Denial"

Cecelia
 

Levi

Senior Member
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Busy Forum

Cecelia,

This forum is so busy that it is easy to do repetitive subject posts. I have started doing a site search first to see if someone has beat me to the punch. Try that with the term "Chronic Denial" ;)
 

annunziata

Senior Member
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Hudson Valley
The publication of this paper has left me feeling strangely quiet. I think I'm a little afraid to hope, all over again. I tested positive for retroviral genetic material back in 1991, I believe it was, and then the CDC just slammed that study. At the one medical conference I have managed to attend in my 22 years of illness, I saw Elaine deFreitas defending her research to a sardonic gang from the CDC. She's a brave woman. I hope her original research is properly vindicated.

Hillary's superb op ed seems to have affected people I've been trying to explain this to for years. An old friend wrote to me that she thought the whole scandal of institutional neglect of this disease, and the suffering of those that are ill, is moving and infuriating. She has never seemed to quite 'get' it until now, although she has certainly tried to be kind and supportive.
 

susan

Senior Member
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Gold Coast Australia
We all whine about everybody not understanding our illness and get very uptight about it all. Yesterday I talked to my young niece who has had a 3yr old daughter with liver cancer. Can you believe how she must feel as a Mum. ?

She has been to hell and back but the the thing is we think everyone "feels" for you when you get cancer...initially they do a bit. However she says, it has been painful for her to watch so called friends just close down, not want to discuss her predicament, at the school gate.

The now monthly visits back to the hospital for more scans to see if it has come back are always challenging and the friends are not interested. Change the subject by saying .... "off to the the shops now a sale is on"

Like us she has had to join a group of childhood cancer group of Mums to get any form of understanding of what it has been like for her family. I think yesterday she got the first idea of what I have been going thru with ignorance.

My sister was busy phoning her in the middle of her trauma last year asking if it was " all in my head" I was battling to stay alive at that point. It was a final straw for me....no more contact with that sister. The illness is bad enough without taking on the ignorance of others.