How difficult would it be for CNN to do a piece like this? We need way more of this. Many of us are perishing because our families and friends tell us to cheer up and toss us aside.
The misinformation isn't just keeping us from treatment. It's throwing us into isolation, furthering the depression and often causing suicide.
I want so badly to change this. I have no money and no power. What can I do?
Posted by lpkayak (Member # 5230) on :
Iymeboy. I kniw exactly what you are saying. In my younger days i made a lot of noise but i learnrd it takes so much energy to get so little change
Somewhere along the line i realuzed i had to use what energy i have fir survival and what little bit of positive living i can find
Its much more the sitting and watching now than the doing
I often feel i am going down but i stay in touch and pray and hope that someday soon a break thru will happen that wull save us all
Posted by Keebler (Member # 12673) on :
- The doctors that CNN pays to be their advisors most likely stop it. Same with most networks. Occasionally, if a celebrity happens to have lyme and is interviewed and it's part of that, some truth might slip through.
But you can bet the physical advisory boards for networks have their field goals on high speed for all medical / health reporting in the works.
And that they trust the CDC, NIH, IOM, IDSA, etc. and - usually sources, and that trust might have been good journalistic form before they all went to the crooked and dark side of lyme.
Since the journalists, themselves, do not know what they should about lyme, they rely on their traditional sources.
And, the pharmaceutical and insurance companies highly support media. These are the very people that would just as soon leave those with lyme in the dust.
Insurance so they don't have to fully cover or think outside the box on each case that can be different from the next and require different protocols.
Pharmacy so that those so ill would "need" their drugs that mask - at least a little bit - some of the symptoms for the rest of a patient's life.
Other than beer & cars, the advertising seems to be heavy for health insurance companies (and local university hospitals for the local media) . . . and for drug companies' masking drugs.
Even local PBS stations bowed to pressure two years ago in the airing of the documentary "Under Our Skin"
When word got out that our PBS station was going to show it one weekday evening at a reasonable hour . . . our local IDSA put so much pressure on our local PBS station to NOT AIR it. But they did -- just one time at 3 a.m. mid-week.
Each PBS station had that film to use as often as they wanted - no charge - for two years' time. Ours was not the only PBS station to be stopped from sharing truth.
Whether the local IDSA doctors write large checks to our affiliate or not, that's not possible to find out. But our university hospital and other health plans do advertise locally and support certain programs.
I don't know if it was just a threat to drop funding or that the IDSA local ID doctors just put up such a fight and had other pressures.
Every network - and every affiliate station of every network has their hierarchy of "reliable experts" and the IDSA national and local ID doctors are at the top of that list.
Why they are not being challenged is an important question. - -
Posted by lymeboy (Member # 24769) on :
"Why they are not being challenged is an important question."
That I'm afraid will go unanswered for a while. Forever maybe.
Unfairness, injustice. Hard things to deal with on top of being cursed with illness.
That is the problem. I want to change it, because so few are able and the ones that are don't understand or care.
Kayak, you are right. I have been focused on so much negativity for so long, because it's all I see. Fighting will just be more negativity. I don't even know who or how to fight. Which has made me pretty dysfunctional and made my loved ones hate me. I can't change things, it drives me nuts.
I'd like to focus on positivity. There's so many pitfalls into the dark side with this one. I should be happy about this article. It's a great article! But it only makes me think about the other, more powerful, ignorant side.
I need to focus on my own positivity and health. But if we all cared a little more, and tried a little harder to understand one another rather than solely focusing on ourselves, perhaps we might not all be in this living hell...
argh.
Posted by lpkayak (Member # 5230) on :
Lymeboy i hope you didnt take wht i said as criticism. It was empathy.
And sharing how i got out of "banging my head against the wall"
I got tired...like you frustrated....and kinda gave up. Not totally cuz as soon as something pops up where i think i can.make a difference i will
I do by answering newbie posts
But yeah...when it was hurting me...the anger...i had to let it go
Spend more time filling my cup than emptying it
I totally blame $ and drug and healh insurance companies
And i cant win against them
[ 05-05-2015, 09:18 AM: Message edited by: lpkayak ]
Posted by lymeboy (Member # 24769) on :
Kayak, absolutely no offense taken whatsoever. I read your post exactly as you intended.
I'm in the middle of that same thing right now. I hit rock bottom with my anger. I've hurt everyone that loves me. I'm mad that they don't understand, and they don't understand because of the misinformation. And I'm lashing out at everyone and myself. It's got to stop.
I have to let it go. And that upsets me too. I hate that all we can do is take care of our own little worlds and so many of us just don't care about anything but that. And when we do focus on others, it is often in a negative way. Even much of the "positive" stuff has resentful undertones to it. It can be very hard to sift through. Having Lyme makes it so tough. 3,5,10 years into complicated, politicized illness can just break you down into a dying ogre. What could have some of those early HIV patients gone through? What a nightmare!
"more and more i feel like there is an organized plan of those with money to squash those without money"
Yep. so incredibly freakish and upsetting. There is a caste system in all societies. Here it seems that a lot of people tend to become bullies when they climb just barely out of the line of frustrating poverty. Not everyone. But it is easy to blame people for all their own problems. Another point of anger that is just not easily expressed over the dinner table.
I've lost the love of my life, and my family hates me. Can't say I blame them. I have been awful. Especially to myself. I don't want to stop caring or turn away from this injustice. It is a disgusting human disgrace. But I'll be dead from a heart attack shortly if I keep going like this.
I wish I could have my old life back, because I liked it. I hate this one. But I'm going to have to learn to live it, or perish.
All that said, CNN can suck a... egg. And so can the IDSA and the CDC, and the insurance lobby and drug companies and 90% of MDs. A Lyme infected egg. I'll go work on my anger issues some more now...
Posted by Abxnomore (Member # 18936) on :
The Poughkeepsie Journal has long been a publication that has printed outstanding and truthful articles about Lyme Disease for many years. They are in an area that is a hotbed for Lyme disease and they are very well connected with the Lyme Disease associations in that area of NY State.
I'm not entirely sure why but I'm pretty sure that there is a very good liaison between those individuals and organizations who are active in the Lyme Community and the newspaper. One thing is for sure is this publication knows the score. They have been an ally of the Lyme Community for many years. I can only think it's the work of diligent activists who have worked relentlessly for years to forge this great working relationship. It's also a small town publication, not CNN like other large media outfits whoa are part of the corporate media empire. CNN and other large media outlets are more interested in ratings and gossip than reporting "real" news.
Posted by seibertneurolyme (Member # 6416) on :
lymeboy,
I can totally understand your frustration.
Wish I had answers.
As you may or may not know I am currently pursuing legal action against the Virginia hospital where my husband died from Babesiosis on 10/9/12.
Here is a recent blogpost that I pretty much agree with. I do think significant research has been done in the last 14 years since hubby initially got sick with tickborne diseases.
Unfortunately the IDSA docs in charge do not believe in much of the research advances simply because they and their Universities were not the ones who did the research,