We're Going Mainstream

[usedtobeperkytina]

Our illness will be featured on a medical drama show: http://www.usanetwork.com/

Royal Pains is the program. It will air this Thursday.

Notice, some physical symptoms are mentioned.

Tina

 

[Riley]

I hope they portray it legitimately. Every time I've seen CFS on a TV show it always ends up the person is faking it, a hypochondriac, or a drug seeker.

 

[5vforest]

I guess any press is good press... but keep in mind, Royal Pains is a show about a concierge doctor in the Hamptons who caters to the rich and privileged.

Kind of reinforced the stereotype of "yuppie flu".

Also, wonder what he'll do to "cure" the patient.

 

[usedtobeperkytina]

My first

My first impression from the ad is that they will treat it seriously. Yet, now that I look at it again, I don't know for sure.

eeek. scary. We will have to wait and see.

But, remember Golden Girls did real well, the writer had the illness.

Tina

 

[5vforest]

Didn't see the promo clip before my previous post.

Unfortunately I think you set your hopes a bit too high. But we'll see tomorrow.

 

[justinreilly]

keep in mind, Royal Pains is a show about a concierge doctor in the Hamptons who caters to the rich and privileged.

Kind of reinforced the stereotype of "yuppie flu".

Also, wonder what he'll do to "cure" the patient.

yeah. the show is called royal pains, "yuppie flu" fits right into this. but the ad doesn't look too bad. he asks "do these black spots on your hands hurt?" is that supposed to be raynauds- didn't think of it really as black spots. or is the real diagnosis something else? tune in tonight...

 

[Dainty]

The only way I can see them portraying CFS with accuracy is if the episode concludes with basically, "I'm really sorry, doctors can only do so much. You're going to have to learn to live your life like this."

Either that or they find out it was something else and everyone lives happily ever after.

lol about the raynauds.

I suspect they're going to make it into a thing about steriods, teen has to get over herself and take them in order to get her life back, drama drama drama, she finally does, she is now better and can do all her normal things again, doc saved the day yet again.

 

[Desdinova]

Or the Golden Girls episode when on of them gets CFS and by the next episode is better.

 

[usedtobeperkytina]

well

Well, my thought is maybe it is:

She has these strange symptoms that are debilitating her and threatens her career.

Oh my, although she is only 14, maybe she is developing chronic fatigue syndrome. (said in a serious tone.)

doctor: maybe so (thinking, well in that case, there is nothing I can do and she will remain sick and disabled.)

Then, in the end, he sees she has black spots on her hands. Ends up she has something else.


I just get a sense of the tone that they at least treat ME/CFS as serious and debilitating. So there is a sense of hopelessness when it is thought that is what she has. But then, surprising symptom. And Viola! he figures it out and it is something else that can be treated.

Of course, I could be totally wrong.

Tina

 

[Lynn]

We can only hope. I watch that show regularly. If they treat the disease nonchalantly, I will have to give up watching it. Oh the tragedy of it all. I hope they know what they are doing.

Lynn

 

[beesknees]

The episode is airing now on the east coast. Fingers crossed that they treat CFS with respect.

 

[Doogle]

They did OK with the subject. They were just brainstorming why the girl was ill when ME/CFS was mentioned (but they used the C word and Epstien Barr.) Another doctor said that could cut her singing career short and they needed to figure it out. They eventually diagnosed Anthrax.

 

[Emmanuelle]

Just have to say I love the quote about the chickens crossing the road, Lynn!!! I'm still laughing.
Also, the user name: usedtobeperkytina .... (took me a while to figure it out, but when I did I LOLed ... !
Thanks!

Still laughing ....

 

[Rooney]

I thought it was great that it referenced a possible dire diagnosis. Small, but I was thrilled. Plus it's a favorite show that transports me to summer at the beach.

 

[usedtobeperkytina]

Yeah

Yeah, I thought they did good. Story plot went exactly as expected.

They treated ME/CFS as though it would take the career away.

But, it would be too much of a downer to have her end up with a debilitating and chronic condition.

To keep viewer interest, they need something curable. They need something with a resolution.

But, clearly, the writer does have some knowledge of the illness. With all the advocacy efforts we have, I wonder if anyone has thought of lobbying Hollywood writers. I bet that would make a difference. This reference, I think, helped us. It gave symptoms, showed can be disabling, connects to viral infection as trigger (instead of psychological or stress). I would have preferred they showed her in bed. Yet, she did describe pretty bad stuff. On the other side, she showed you can look fine and yet be very ill.

On balance, it was good.

Tina

 

[Doogle]

With all the advocacy efforts we have, I wonder if anyone has thought of lobbying Hollywood writers. I bet that would make a difference.
Tina

I like it. Your idea would show there is interest in the subject and hopefully stimulate more story lines about the illness.
Maybe we should address the writers of the show and tell them we appreciate that they portrayed the illness in a reasonable manner and didn't trivialize the illness.

 

[usedtobeperkytina]

Well, they may read the message board: http://forums.usanetwork.com/index.php?showforum=90

 

[muffin]

Clearly something is working for us. Maybe those in Hollywood have enough sick people (they hide their disease) that are fed up with hiding and are now pushing to get their disease legitimized so that they can work when they are "OK" and have others understand what is wrong with them. Who knows but we are getting more PUBLIC stuff hitting and that seems to scare the governments even more.

We do need to hit with another major PUBLIC project to keep our disease and the Retrovirus OUT THERE IN THE PUBLIC.

Please join the ME/CFS Worldwide Patient Alliance (www.mcwpa.org) or via Facebook Causes at: http://www.causes.com/causes/511536?m=f042604e


The Washington Post Ad and worldwide Press Release (that was also shown for three days revolving at NY's Times Square) had a number of impacts. We knew there would be implications to that AD and PR that we could not forsee. One of them appears to be that we are terrifying the governments of the US and UK so very badly that they are fighting back in every way possible. Putting Myra McClure on the US NIH Peer Review for ME/CFS was one way to HIT us back for that AD and PR. As Mary S has said (paraphrased) - We do have friends at NIH but we also have enemies - and we do indeed have enemies and they are running scared right now. Well, fighting back at us means we did the job in getting the public involved and pushing on the Feds to find out about this new deadly Third Human Retrovirus that no one knew about until WE (MCWPA) went very public with using the Washington Post newspaper - the most important newspaper in the world. We scared the Feds. And that is great. But now we have to keep fighting them and beating back. Fine. We can and will do that.

We MUST fight back and really pound on the US, UK, Canada, Australia and all other governments NOW! They are terrified and they are going to keep fighting us. Our greatest weapon is our numbers and the huge united force that the Internet has given to us.
When so many millions of ME/CFS sick from around the world join and fight against eachother's governments (and others involved), it gives US the upper hand. They have to waste their time fighting us. We can sit at our computers and beat on them and make things very public. And right now we really must be very public. Why did they put Myra McClure of ALL people on the NIH Peer Review? WHY?

Help us get money to lob another nuclear bomb over their bow and really sink their ship. We must get major PUBLIC involvement against the governments and what they are doing to us -- but also the whole rest of the world's population.

Join. Give ideas and input. Donate if possible - MCWPA is Worldwide - We ARE the UNITED FRONT for beating on the world's governments to fix the ME/CFS mess THEY created for us and have damned us to live in.

No more. Fight and keep fighting. Join and help us beat on them and ensure the average citizens know what their governments have done to them. It's not only about us anymore- but the rest of the entire population. Join. Input. Donate. MCWPA.org

 

[WillowJ]

I like it. Your idea would show there is interest in the subject and hopefully stimulate more story lines about the illness.
Maybe we should address the writers of the show and tell them we appreciate that they portrayed the illness in a reasonable manner and didn't trivialize the illness.

I think it would be cool if "Lie to Me" did a show where they proved a person with ME was truly sick and made the docs (or the DHHS!) take the patient seriously. I don't like the premise of the show that understanding people's noverbal communication is an exact science, but, within the context of the show... it would be nice to have the Disease positively featured on that show

 

[taniaaust1]

Is there an email or something for ones involved in that show.. so we can mail on mass and thank them for protraying the illness how it is? (I didnt see it but would still like to send a thank you). Let them know we are discussing the show and appreciate the eposide we saw or heard about.

I think we need to put energy to into those who are doing well in getting our illness across correctly just as much as putting energy into mailing and complaining when tv shows dont.