Help kick Lyme disease in the ass!
Please read this, and take the simple actions I've bolded below..
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
Hello Rockstars,
When I last posted the Oprah forums has 198 comments requesting her to do a show on Lyme Disease and the amazing documentary about Lyme: Under Our Skin Now, there are over 1,000 comments on the boards requesting this show!
We believe Oprah's folks are deciding whether to do this show This Week, and so this is a time sensitive action.
It took me about 10 minutes to register, activate and write my request - but I wrote a wordy, personal account. It would take even less time for you to say something like: Please do this show Oprah.
To give you a better idea of what is at stake: There are two Federal bills sitting in committee right now: Federal Bills S 1708 / HR 741
Lyme & Tick-Borne Disease Prevention, Education & Research Act of 2007
http://www.lymediseaseassociation.org/HR741/HR741.html
The IDSA - The Infectious Disease Society of America - does not want congress to hear the voices of Lyme patients and Lyme doctors and they are actively working to prevent this from happening.
They are the same folks who infamously decreed there is no such thing as chronic, late stage Lyme disease a few years back which is part of the reason very few doctors are willing to treat Lyme patients. And definitely one of the reasons so little information reaches the public about the dangers of tick-borne infections.
Wait, Fran...that sounds a little Black Ops/Conspiracy-esque to me....I mean, what would their incentive be?
Late stage neurological Lyme costs between $75,000-$100,000 to treat properly and get under control.** There are a lot of people in the country suffering (mostly unknowingly,) from late stage Lyme disease.
"If" this disease "existed" the insurance companies would have to cover treatment, and that wouldn't be terribly profitable for them.
More than half of the doctor's who sat on that initial IDSA panel which stated late stage Lyme doesn't exist were actively on the payroll of several major insurance companies at the time of their decision. ***
This is our time. This is our necessary time. With this kind of national exposure the IDSA would not be able to silence us and Congress would have no choice but to include our voices in their decision making process.
Here is what I'm asking you:
1) Re-post my original request and this post if you want to. Tell your friends, your co-workers, your family members. Cutting and pasting has never been easier or likely to help more people.
2)Register on Oprah.com and add your voice to the forum. 10 minutes or less of your time can make an enormous difference here.
Here is how:
Here is the link where you can post a message - if you are already a member of Oprah's community.
http://tinyurl.com/bqo8vo
If you are not a member of the Oprah community, you will need to sign up first:
click on this link to sign up:
https://www.oprah.com/mbr/mbr_new_profile.jsp
Once you have filled out the appropriate info -- easy stuff, name, username, email address, birth year -- then you will get an email to your email address: You'll get an email from Oprah's web people sending you an activation link that you will need to click on in order to get started. Then you can click on the above link and post your comments.
3)Educate yourselves and your loved ones about Lyme disease. How many of you on my relatively short friend's list suffer from "mysterious" and "hard to diagnose" auto-immune disorders and chronic infections? Too many of you. How many of your stories are familiar to me? Way, way too many.
4)If you have a web site, podcast, radio show or other venue with lots of readers and listeners interview me. Ask me to write something for you. I will sing for my supper and I will sing for my health. I am a charming guest, I promise. And things like: gender, queerness, race, poverty, facility with the English language, a history of mental health issues and size do not tend to help people with serious illnesses get the care they need from the medical industry. I know this because I'm not only a patient, I'm a 10 year veteran of low-income health care work and advocacy.
We can do this! "Nothing can stand in the way of millions of voices calling for change." It's a new day, we have a new administration, we need your voice and 10 minutes of your time.
I need that from you.
In return I promise that as long as I have air in my lungs I will use my voice to not only make the world better for Lyme patients, but to fight for Universal Health Care. I promise I will advocate for True Universal Health Care - not just for Americans but for all citizens of the world. I will not stop fighting but I need your help now.
Please re-post. Please re-post. Please re-post. And please add your voice to the call for change.
I will be sending out a more formal request in the near future - but I'm also going to post a link to my own site here. I know that times are lousy for everyone - I know that many people are in need. In my opinion, whenever you donate time, energy or money to anyone in need you are helping me. You're making the world a better place. If you are so inspired you can make a donation to my health care fund. All donated money goes directly toward: doctor's visits, treatment, medication and much needed diagnostics. I will be a better fighter when I have my legs and brain and heart back and in proper working order.
www.helphealfran.org
Thank you so much already! I have so much hope for us, and that is because of your tremendous response so far. Thank you.
***********************************************
**This is part of the reason my healing is not progressing as quickly as we'd all like it to, I lack the kind of funds necessary to really get to the bottom of things. Unfortunately, even if I had insurance at this point it wouldn't really matter because Lyme literate doctors are less and less willing to to accept insurance of any kind. As soon as they start submitting bills for treatment to the insurance companies the insurance companies turn around and say: "Hey, this doctor is a quack who is treating people for a disease the IDSA clearly says doesn't exist." Then they report those doctors to their local medical boards where many have lost their licenses - the only Pediatrician who specializes in Lyme in this country lost his license this way. Alternately, the insurance companies sue the doctor's for "off-label" treatment and demand "their" money back often causing the doctors to become bankrupt, at which point they have to close their practice, this has happened to two wonderful doctors in North Carolina in the past few years alone.
***They are currently under investigation and all of this is documented beautifully in Under Our Skin. http://www.underourskin.com/ If you are so motivated you can purchase a copy of the dvd from their site and organize viewings in your community or just with friends. It's another relatively inexpensive, powerful act of education you can perform.
+++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++++
Hello Rockstars,
When I last posted the Oprah forums has 198 comments requesting her to do a show on Lyme Disease and the amazing documentary about Lyme: Under Our Skin Now, there are over 1,000 comments on the boards requesting this show!
We believe Oprah's folks are deciding whether to do this show This Week, and so this is a time sensitive action.
It took me about 10 minutes to register, activate and write my request - but I wrote a wordy, personal account. It would take even less time for you to say something like: Please do this show Oprah.
To give you a better idea of what is at stake: There are two Federal bills sitting in committee right now: Federal Bills S 1708 / HR 741
Lyme & Tick-Borne Disease Prevention, Education & Research Act of 2007
http://www.lymediseaseassociation.org/HR741/HR741.html
The IDSA - The Infectious Disease Society of America - does not want congress to hear the voices of Lyme patients and Lyme doctors and they are actively working to prevent this from happening.
They are the same folks who infamously decreed there is no such thing as chronic, late stage Lyme disease a few years back which is part of the reason very few doctors are willing to treat Lyme patients. And definitely one of the reasons so little information reaches the public about the dangers of tick-borne infections.
Wait, Fran...that sounds a little Black Ops/Conspiracy-esque to me....I mean, what would their incentive be?
Late stage neurological Lyme costs between $75,000-$100,000 to treat properly and get under control.** There are a lot of people in the country suffering (mostly unknowingly,) from late stage Lyme disease.
"If" this disease "existed" the insurance companies would have to cover treatment, and that wouldn't be terribly profitable for them.
More than half of the doctor's who sat on that initial IDSA panel which stated late stage Lyme doesn't exist were actively on the payroll of several major insurance companies at the time of their decision. ***
This is our time. This is our necessary time. With this kind of national exposure the IDSA would not be able to silence us and Congress would have no choice but to include our voices in their decision making process.
Here is what I'm asking you:
1) Re-post my original request and this post if you want to. Tell your friends, your co-workers, your family members. Cutting and pasting has never been easier or likely to help more people.
2)Register on Oprah.com and add your voice to the forum. 10 minutes or less of your time can make an enormous difference here.
Here is how:
Here is the link where you can post a message - if you are already a member of Oprah's community.
http://tinyurl.com/bqo8vo
If you are not a member of the Oprah community, you will need to sign up first:
click on this link to sign up:
https://www.oprah.com/mbr/mbr_new_profile.jsp
Once you have filled out the appropriate info -- easy stuff, name, username, email address, birth year -- then you will get an email to your email address: You'll get an email from Oprah's web people sending you an activation link that you will need to click on in order to get started. Then you can click on the above link and post your comments.
3)Educate yourselves and your loved ones about Lyme disease. How many of you on my relatively short friend's list suffer from "mysterious" and "hard to diagnose" auto-immune disorders and chronic infections? Too many of you. How many of your stories are familiar to me? Way, way too many.
4)If you have a web site, podcast, radio show or other venue with lots of readers and listeners interview me. Ask me to write something for you. I will sing for my supper and I will sing for my health. I am a charming guest, I promise. And things like: gender, queerness, race, poverty, facility with the English language, a history of mental health issues and size do not tend to help people with serious illnesses get the care they need from the medical industry. I know this because I'm not only a patient, I'm a 10 year veteran of low-income health care work and advocacy.
We can do this! "Nothing can stand in the way of millions of voices calling for change." It's a new day, we have a new administration, we need your voice and 10 minutes of your time.
I need that from you.
In return I promise that as long as I have air in my lungs I will use my voice to not only make the world better for Lyme patients, but to fight for Universal Health Care. I promise I will advocate for True Universal Health Care - not just for Americans but for all citizens of the world. I will not stop fighting but I need your help now.
Please re-post. Please re-post. Please re-post. And please add your voice to the call for change.
I will be sending out a more formal request in the near future - but I'm also going to post a link to my own site here. I know that times are lousy for everyone - I know that many people are in need. In my opinion, whenever you donate time, energy or money to anyone in need you are helping me. You're making the world a better place. If you are so inspired you can make a donation to my health care fund. All donated money goes directly toward: doctor's visits, treatment, medication and much needed diagnostics. I will be a better fighter when I have my legs and brain and heart back and in proper working order.
www.helphealfran.org
Thank you so much already! I have so much hope for us, and that is because of your tremendous response so far. Thank you.
***********************************************
**This is part of the reason my healing is not progressing as quickly as we'd all like it to, I lack the kind of funds necessary to really get to the bottom of things. Unfortunately, even if I had insurance at this point it wouldn't really matter because Lyme literate doctors are less and less willing to to accept insurance of any kind. As soon as they start submitting bills for treatment to the insurance companies the insurance companies turn around and say: "Hey, this doctor is a quack who is treating people for a disease the IDSA clearly says doesn't exist." Then they report those doctors to their local medical boards where many have lost their licenses - the only Pediatrician who specializes in Lyme in this country lost his license this way. Alternately, the insurance companies sue the doctor's for "off-label" treatment and demand "their" money back often causing the doctors to become bankrupt, at which point they have to close their practice, this has happened to two wonderful doctors in North Carolina in the past few years alone.
***They are currently under investigation and all of this is documented beautifully in Under Our Skin. http://www.underourskin.com/ If you are so motivated you can purchase a copy of the dvd from their site and organize viewings in your community or just with friends. It's another relatively inexpensive, powerful act of education you can perform.