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'O', the Oprah magazine, publishes positive CFS article

SOC

Senior Member
Messages
7,849
Assuming with article is sound, which preliminary info suggests it is, this is HUGE from a social/political perspective.

Millions of people -- our friends, family, and neighbors -- read 'O' and are now likely to have a much more realistic view of what we are dealing with. Those are the people who affect our everyday lives, who will sign petitions, who will donate to research. We've been, necessarily, focusing on the science and research funding arms of advocacy, but this is another extremely important arm if we are going to make any progress.

If you have any doubt about the importance of the view of the average Jo/e, just look at how much effort the BPS people are putting into propaganda to turn the general public against us. They know the value of having Joe the Plumber for (or against) you.
 

Gingergrrl

Senior Member
Messages
16,171
It's a good article but I wish she would have mentioned the most severe like Whitney Dafoe or those who are bed-bound or wheelchair bound, etc. But it is a great start and I have always loved Oprah. Am still hoping she does a serious article on Fluoroquinolone Toxicity Syndrome, MCAS, Mold/CIRS, and other topics some day... I can dream LOL.
 

Mij

Senior Member
Messages
2,353
She had someone on years ago who was sick from cipro and I think someone with CFS.

I think the show was about weird illnesses

I think that might have been the show I saw. A medical person(not sure it was a doctor) or maybe a family member in the audience mentioned CFS was an organic brain disease.
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
It's a good article but I wish she would have mentioned the most severe like Whitney Dafoe or those who are bed-bound or wheelchair bound, etc. But it is a great start and I have always loved Oprah. Am still hoping she does a serious article on Fluoroquinolone Toxicity Syndrome, MCAS, Mold/CIRS, and other topics some day... I can dream LOL.

Yes, exactly. I think seeing Whitney's photo (in that last article about him) should really drive home the point about how debilitating (and deadly!) this illness can be.

I liked some of Oprah's shows in the past, (I don't have cable and have not seen anything in recent years on OWN), but I think that her New Age philosophy, which she is heavily steeped in, tends to steer her away from stories about people whose life's challenges don't have a heroic ending, or at least a heroic spiritual "lesson" to be learned in the process along the way. New Agers abhor the idea that sometimes shit just happens, and that we are not exclusive "creators" of our reality.

That said, I am gad that she was willing to run this story. At last!
 

Gingergrrl

Senior Member
Messages
16,171
Yes, exactly. I think seeing Whitney's photo (in that last article about him) should really drive home the point about how debilitating (and deadly!) this illness can be.

@Dreambirdie Totally agree on all points.

I liked some of Oprah's shows in the past, (I don't have cable and have not seen anything in recent years on OWN), but I think that her New Age philosophy, which she is heavily steeped in, tends to steer her away from stories about people whose life's challenges don't have a heroic ending, or at least a heroic spiritual "lesson" to be learned in the process along the way. New Agers abhor the idea that sometimes shit just happens, and that we are not exclusive "creators" of our reality.

I actually do watch OWN and she currently has a beautiful show called "Belief" and in general I like her philosophy on life. But I agree that often she likes to have a heroic ending or a spiritual lesson learned from the process. I often try to apply this to myself and wonder if there is a lesson that I am supposed to learn from all this suffering and that I am just not getting it yet? I do pray about it and talk to others about it but am still not sure b/c in my career and volunteer work, I helped so many people and with that now gone, it seems like my purpose was taken away and I was contributing to the greater good of society for so long and now being basically housebound, I am not contributing anything.

That said, I am gad that she was willing to run this story. At last!

Me, too, and it is a great start. I hope she builds on it and it is not an isolated incident.
 

waiting

Senior Member
Messages
463
Thanks, @Sasha, for letting us know about this article. It is excellent.

And in addition to Oprah for publishing it, a big thank you to the patient, Ann Cavanaugh Kramer, who told her personal story and the writer, Cheryl Platzman Weinstock, who paid attention, presumably did the research, and got the facts right!!
 

Dreambirdie

work in progress
Messages
5,569
Location
N. California
Someone I know on FB posted that Ann Cavanaugh Kramer spoke with the author of the article in O Magazine. She said the best way to show our appreciation and hopefully get good follow-up articles, after buying the issue, is to email to the following:

Youropinions@hearst.com; cherylpw@optonline.net

Please include,
Full name:
City:
State:
December issue
"I'm Not Just Tired!" By Cheryl Platzman Weinstock
Any comments and/or words of thanks
 

SOC

Senior Member
Messages
7,849
I have never before purchased 'O'. This issue I most certainly will purchase, and assuming I find the piece suitable, will recommend my friends and family do the same. :thumbsup:
 

ahimsa

ahimsa_pdx on twitter
Messages
1,921
She had someone on years ago who was sick from cipro and I think someone with CFS.

I think the show was about weird illnesses
Yes, you're right, it was not about ME/CFS specifically. I remembered the name of the patient, Wilhelmina Jenkins, so I googled and found this link:

CFIDS ON OPRAH SHOW JULY 29, 1998 -
http://www.oocities.org/hotsprings/spa/4225/oprah.html

How did I remember the patient's name? She recently commented on this article:

http://news.sciencemag.org/health/2015/10/nih-refocuses-research-chronic-fatigue-syndrome

And I thought, wait, isn't that the name of woman who has long been associated with CFIDS Association/SolveCFS? Yep.

http://solvecfs.org/a-conversation-with-roger-king-and-wilhelmina-jenkins/
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
But I agree that often she likes to have a heroic ending or a spiritual lesson learned from the process.
I think there IS a spiritual lesson here. Millions of very sick people (globally). Enduring things others do not even dream about. Despite illness, despite denigration and scepticism from many doctors and authority figures, we live on, persist, endure, and challenge the system to make things better for all of us. Sure, as a community we have almost no political influence, but we have not given up.
 

ahimsa

ahimsa_pdx on twitter
Messages
1,921
I do pray about it and talk to others about it but am still not sure b/c in my career and volunteer work, I helped so many people and with that now gone, it seems like my purpose was taken away and I was contributing to the greater good of society for so long and now being basically housebound, I am not contributing anything.

(Brain fog, having trouble finding the right words, but here goes)

It's very hard to resist the idea that all people must justify their existence. I strongly believe that people have worth even if they are not able to contribute to society in some tangible way (working, volunteering, housework, or whatever way people try to contribute).

And yet I still find a lot of this feeling in myself (feeling really bad that I'm not contributing). I would call it internalized ableism.

I completely understand that feeling of "Why am I still here? What is my purpose?" It's a struggle.

I guess the answer is different for everyone. And probably changes over time. I've been sick since 1990, unable to work since 2000, so I've thought about this a lot.

However, I agree with @Groggy Doggy that you contribute quite a lot to the PR forums. Your help is noticed and appreciated!
 

alex3619

Senior Member
Messages
13,810
Location
Logan, Queensland, Australia
I do pray about it and talk to others about it but am still not sure b/c in my career and volunteer work, I helped so many people and with that now gone, it seems like my purpose was taken away and I was contributing to the greater good of society for so long and now being basically housebound, I am not contributing anything.

Even those who cannot come online can contribute.

People appreciate your posts, I agree with @Groggy Doggy. Even if it does not seem to be much, if you are writing it then thousands might be thinking it or interested. Your comments can touch all of them. If you ask questions and get answers then others might find answers too. Every single one of us can enrich this community.