Dr Phil

[steph37822]

[oops

[Sophia3]

http://www.wicfs-me.org/dr.htm

This site mentions how Oprah did a show about illnesses that took 'FOREVER to be dx' and CFS was briefly mentioned.

The link also mentions a hypotension like problem talked about in the 1930's.

I know Ted Koppel is going to retire soon but does anybody remember when a bunch of us wrote him in 1999 to do a show on Dysautonomia? I don't believe any of us heard back but at least many of us tried. You think somebody could at least send a form letter like "thank you for your suggestion."

I DO remember getting a letter back from Sen. Ted Kennedy in the early 90's when we did a monster letter writing campaign on CFS. His note even mentioned HE KNEW of some people who suffered from the illness and was a believer in it's severity. That was when I got the CFIDS Chronicle each month by mail and MANY of us wrote the same people at the SAME TIME.

I often wonder what show would be best to approach. I know Oprah is powerful and gets many letters, more than her producers can read. How about 60 minutes? OR DATELINE to ask them to Follow up on the mysterious illness they actually mentioned by name.

Also, I have heard many producers like hearing via snail mail as opposed to email. Does anybody know if that is true in this day of electronic email.

I just remember I couldn't believe I got a response from Kennedy, though I know many aren't a fan of his. But the fact he sent out a form letter with some 'personalized parts to it' amazed me. Course back then, we all did old fashioined mailings. And phone calls.

Like what if we all sent letters on the same subject via email AND via snail mail? Just send out the same letter with a stamp every couple of weeks???

I know there is strength in numbers...The squeaky wheel may get the grease but the wheels that roll TOGETHER actually get somewhere!!

[Guest Julia59]

Sophia---that is so great! You must have been so excited to get a response from Senator Kennedy.

Rachel----you did a great thing----you have my full support.

My rantings are purely my own frustrations of seeing so many unanswered letters written about a very very serious illness. This in no way means I don't support anyone who tries to continue to reach out. I still do---despite my need to vent about the letters that go out and never get answers.

Folks---I don't want to appear negative----i'm just a realist.

I still continue to keep trying----writing the letters---- trying to educate every medical professional I come accross ect. I come to this place to vent sometimes---as well as offer my support.

I do not have a college education----I used to feel bad about myself for this, but I know that is the way the chips fall sometimes. I went to college late in life because the confidence was sucked out of me during primary--and highschool years. They just didn't work with kids that had ADHD back then---60s and 70s. You fell through the cracks..............

I went back to school and took classes to earn my GED.

After doing things backwards and working my way up in a company and gaining some confidence, I decided to go and try taking college classes. It was less of a struggle then I thought, and after I got sick and couldn't work full time and go to school it was heart breaking because I found out I had a high GPA and had to quit-----I had not seen that in myself in many years if ever. In a way I was mad as I felt ripped off because the system didn't work with me when I was younger. I still struggle with that to this day----how things could have been. Unfortunately there is a prejudice out there towards people who do not have a college education----of course this is covered up very well. We are sometimes treated like we lack intellect.

WEll----as you all know---we have all seen individuals with MDs who are as shallow as they come.

So yes---I lack a college education (but I can write a letter). I've grown wiser and gained a lot of experience through the years. I've learned to access a situation fully before I make my move. I have tried and failed---and tried and failed---and at some point one of us is going to reach someone---and our voice will finally be heard.

I'm careful and try to not get my hopes up unless I know there is a chance we will be heard.

By no means should any of us stop trying----not ever. I truly respect anyone who has it in them to speak out in this war we battle to get recognition for such a serious and disabling illness. That is why I took it upon myself to form a local support group with another person----even though I did not end up leading the group, I felt like I was contributing something by co-leading---and trying to advocate for other patients-----it is still a learning process. I saw people much worse off then myself----and a lot of them needed some guidence and support. To me----this was a positive thing to do.

Julie :0)

[Sophia3]

Julie

I totally understand your being a realist. I think I am too. With this illness after so many years of been there, done that, I think many of us, like myself may come off cynical or negative. But it's real. When Dr. Grubb told me I had done all I could be doing with this illness to fight the wheelchair and being TOTALLY bed bound, I felt validate as well.

That said, the right gripe, at the right time, to the right PEOPLE SIMULTANEOUSLY, can get big response. About 17 years ago, I lived in a mixed residential/business setting. Some guy opened a 'teen night club'. It was about say, 5 houses away but the loud music was incredible. Elderly people lived all around us and the kids would urinate in the yards and one guy found a couple having SEX under his window!! YIKES.

I went nuts in a letter to the police dept, the city council and the mayor. I signed the letter Concerned Citizen out of fear of retaliation. My letter was quoted and used on the front page of our paper. I got calls from many folks, including the mayor two times! After folks investigated and the neighbors backed up all i said, the rowdy night club WAS CLOSED!! All because of one big mouth, who spoke for a dozen or so elderlu families. The doctor who's office we lived above was thrilled with my letters and to this day, knows I was the one who got the ball rolling. I never did disclose my name to the community about it. Sometimes it's nice to do things anonymously. Especially when the end result makes other feel better.

So you never know what a simply paper letter can do.

I have gotten an email from a celebrity journalist acquaintances and she said DEFINITELY send snail mail. most producers just delete most mail as it fills up their boxes every day. She said since we do indeed, suffer and unusual illness that seems to affect a minority, to gather letters enmass!!

My therapist tried to get a magzine journalist to speak with me last year but the journalist (who wrote about obscure illness for Ladies Home Journal and other mags she freelanced in) thought autonomic problems sounded too broad in scope but would be directed at too narrow of a target audience.

Its all about demographics these days. I say all of us, of all ages should focus on one show. What could it hurt?

Maybe if enough of us howled during the same full moon, lol.

[Evie]

Deleted ... sorry dont know how to delete the whole post

[Sunfish]

i'm sorry if my original posting came across as unsupportive to people writing. that was not my intent in the least & think it's AWESOME & IMPORTANT that all who feel able, willing, etc. to do so do whatever it is to inform others...letters, blogs, own family/friends/doctors....it can be different for different people.

the reason i posted re: the specific topic having a psychological focus was B/C "spreading the word" IS important to me. i can't imagine how thrilled i'll be when "it" happens, which i believe it will - a good article, coverage on a show, whatever "it" is. many times, though, topics & submitted ideas are looked at individually though, so that a medical illness topic submitted under a psych topic could get entirely thrown aside wherein if submitted elsewhere could get read/considered. i have a friend who interned at a major show (not there now, so unfortunately i have no connections!)& this is how things were done...b/c of the volume rec'd if something didn't fit the topic it often didn't make it into consideration at all (aka didn't get rerouted to the proper topic/place).

so....i just didn't want people's time & effort to get thrown aside solely for this reason.

melissa

Edited October 21, 2005 by Sunfish

[Guest Julia59]

Melissa---------I fully agree---you couldn't have worded it better. I don't think a letter sent under that subject would make it to the right hands.....

I did send another letter--(but separate from the extreme illness subject)----probably too long---but how can you describe all this in a short letter? Mine was just under two pages---hopefully they can handle that.

I need to work harder on my summary skills.-----------

Julie :0)

[Sophia3]

[Guest Julia59]

[Patricia Gallup]

Can I ask how this topic got so terribly OFF topic???

I don't understand why there is now a debate over who does and doesn't have a college degree--if I wanted to, I could also find WEBSITES with people who DO have higher education degrees and certainly add my name to the list--but I don't believe that has ANYTHING to do with dysautonomia, and subsequently doesn't have anything to do with Dr. Phil.

I was interested in this and what people were going to do, as I often contact everyone I can to inform them of my daughter's condition. I now fear that because a few have chosen to go on a tangent---for a reason I cannot follow from the postings---that no one is going to get back ON TOPIC.

It would be great if the off topic issues about college would be REMOVED--in my opinion--so we can get back to the ORIGINAL TOPIC.

Thanks

[Sophia3]

Sorry Patricia,

Didn't mean to hijack the thread or add to it. Just wanted to give feedback about college not being what makes a person worthy or not. Have to run but will edit my post later or remove it.

Peace!

P.S. Many of those successful people DO have extreme disorders but I don't want to list what matches whom. But you can put bipolar and severe mental illness in to some of those. So I meant to post, not only can you not go to school, but many GREAT ARTISTS and inventors and creative types have mental illness but are most successful in their careers!!

There was also that young man on 60 minutes some years back who was autistic and I think mentally challenged but he played the piano like a VERY STUDIED concert pianist.

Sorry again if I hijacked this thread. Gotta run to my sisters. My ride is here.

[Guest Julia59]

Sophia---I appreciate your input----but to keep the peace---I removed my postings on Education.................

Patricia---I think the majority of the postings are on subject---and usually stay there. There is a lot of information on this website to help you.

We appreciate your opinion---and I removed my post.....

Lot's of people on here talk about their EDUCATIONS---or lack there of......

Some people are still trying to complete their educations---but struggle due to their dysautonomia.

Sorry to get off subject---something just struck a nerve...........

Have a good night----------------

Julie :0)

[Evie]

I too will edit my post about education ... however i think posts usually do go back to the point of the thread, sometimes we go off tangent but we get back to the point eventually.

Good luck with getting attention guys! I hope the people who make shows take it seriously and dont put a psyc spin on it.