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MSNBC/Today Show Segment

slayadragon

slayadragon

Senior Member
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1,122
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twitpic.com/photos/SlayaDragon
Here is a segment that just ran on (I believe) both MSNBC and the Today Show.

http://www.msnbc.msn.com/id/21134540/vp/43463612#43463612


Unfortunately, the woman in this segment appears not to be very ill. That makes the disease look really trivial.

A few of us would like to lobby the producers and the doctor profiled to do an additional segment, showing someone who is severely ill with the disease.

If you have the ability, please send a note to one or more of the following addresses (preferably all of them), expressing concerns and requesting that another person be profiled.

http://www.msnbc.msn.com/id/10285339/

http://today.msnbc.msn.com/id/29041920/ns/today-today_participate/

http://www.facebook.com/drnancyMSNBC


Thanks much for your help!

Best, Lisa
 
dancer

dancer

Senior Member
Messages
298
Location
Midwest, USA
It really bugged me. I felt so mis-represented. More fodder for friends who think I just need to make a few adjustments and life can go back to normal. HA!!! That depiction of CFS has VERY little in common with the completely disabling illness that stole my life.

and no one in these light media portrayals questions the logical flaws in how "no one is sure what causes this, and how to treat it - it used to be thought of as a mental illness but now we know it isn't" - yet the main recommendation is CBT, counseling, therapy. ARGH!

This felt like a huge step backwards in the way media has been portraying ME/CFS. I'm feeling really discouraged.
 
Carrigon

Carrigon

Senior Member
Messages
808
Location
PA, USA
They always do this and downplay the severity. They never show someone who is bedridden or wheelchair bound with this disease. They never show someone whose entire life has been destroyed by it. And they never show a child with it who is severely ill.
 
zoe.a.m.

zoe.a.m.

Senior Member
Messages
368
Location
Olympic Peninsula, Washington
What a mess this segment is. Is this the "typical" patient? An older woman with gold jewelry, designer sunglasses, statues and expensive furniture in her house and a host of dogs? Barf. It's like using one person's experience of having a malignant mole removed, but otherwise being completely cancer free, to use as the poster-child for cancer. I don't know which asshole producers chose this patient and doctor, but I'm getting really sick of it (guess I'll have to manage my anger around my symptoms!). What was with the photos of her mid-run? Again: classic ME/CFS, right?

The only good thing I can think of coming out of this is that CFS needs to be completely removed from ME and we need to start seeing stories for ME. Perhaps this woman's story is a good representation of CFS (if you have the funds and ability to just roll with your condition and it kicks in at an advanced age when most people's abilities start to decline), it just has nothing to do at all with ME/CFS?!

And "shotty little lymph nodes that really don't mean much..." said the doctor, um, that means immune activation (for years, as she described the condition). That doctor is one of the worst types of doctors too, no curiosity, no outrage, just content to dole out "treatments" (ADs are all I heard her mention)!!
 
K

kday

Senior Member
Messages
369
Women Women Women Women.

Girls girls girls girls.

I honestly think men and children are likely to get misdiagnosed or undiagnosed because of the "it's an older woman's disease" bias.

I know that I would have never been properly diagnosed if I listened to the medical establishment that knows nothing. I probably been to 20-30 physicians, and not one mentioned such a syndrome.

By the time women see a doctor, they had it for months to years.
Click to expand...

I am not a woman, but I went to the doctor on day 1 as I woke feeling the worst I had in my life. The idiot doctor ran "lab work" and declared there was nothing is wrong with me (even though there were immune abnormalities on the first draw).
 
M

markmc20001

Messages
877
zoe.a.m. said:
What a mess this segment is. Is this the "typical" patient? An older woman with gold jewelry, designer sunglasses, statues and expensive furniture in her house and a host of dogs? Barf. It's like using one person's experience of having a malignant mole removed, but otherwise being completely cancer free, to use as the poster-child for cancer. I don't know which asshole producers chose this patient and doctor, but I'm getting really sick of it (guess I'll have to manage my anger around my symptoms!). What was with the photos of her mid-run? Again: classic ME/CFS, right?

The only good thing I can think of coming out of this is that CFS needs to be completely removed from ME and we need to start seeing stories for ME. Perhaps this woman's story is a good representation of CFS (if you have the funds and ability to just roll with your condition and it kicks in at an advanced age when most people's abilities start to decline), it just has nothing to do at all with ME/CFS?!

And "shotty little lymph nodes that really don't mean much..." said the doctor, um, that means immune activation (for years, as she described the condition). That doctor is one of the worst types of doctors too, no curiosity, no outrage, just content to dole out "treatments" (ADs are all I heard her mention)!!
Click to expand...

My thoughts exactly.

Propaganda.

All perfect perfectly timed with the debate is over news spin article that threw everybody into another tail spin.
 
justinreilly

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
kday said:
Women Women Women Women.

Girls girls girls girls.

I honestly think men and children are likely to get misdiagnosed or undiagnosed because of the "it's an older woman's disease" bias.

I know that I would have never been properly diagnosed if I listened to the medical establishment that knows nothing. I probably been to 20-30 physicians, and not one mentioned such a syndrome.
Click to expand...

Right. This was inappropriate to only mention women.

Lisa, Thank you for doing this; very important!!

sent a note (as always, anyone feel free to use w/o attribution):
Dear Today Show Producers, Host and Nancy Snyderman,

Re: ME/CFIDS/CFS segment
http://www.msnbc.msn.com/id/21134540/vp/43463612#43463612

Thank you for running a segment on ME/CFIDS. It could have been more accurate; unfortunately CDC and NIH have been persecuting us for decades so their info is usually inaccurate. It is more debilitating than MS or untreated AIDS. Also men and boys do get it. Please do another segment and include someone who's disability is reflective of the actual average disability. Thank you.

pls feel free to contact me.
Click to expand...
 
Nielk

Nielk

Senior Member
Messages
6,970
This was my comment on Dr. Nancy Snyderman's FB/


I was really surprised two days ago when I saw your segment on CFS. I would expect this from a layperson who just googles the CDC and finds this antiquated information on their website. This is so far from the truth for most of the 1.7 million people suffering from this severely disabling disease.Had you sent your film crew to my house, you would have found me laying in bed like a cocoon. I am thankful to you for mentioning the illness and bringing awareness to it but, I wish you would have spoken to specialists who see hundreds or thousands of cases. They would have told you that what the CDC has on their website is a joke. Had you asked Dr. Nancy Klimas from Miami Florida who treats aids patients and CFS patients in her clinic, she would have told you that if she would have to chose between these two illnesses, she would chose aids because at least they have some treatments that work
 
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