posted
Betty urged me to put this topic on, in this forum. Please pass it on.
Dear Betty,
I thought this would catch on with Lymenet, but haven't seen it.
Part of the Obama website polls anyone who wants to register on various topics. A person can initiate a topic or vote on topics already posted. The large SEARCH box allows a signed in voter to type in a word like "Lyme" and have the topics just on that subject show. There are about seven Lyme topics with only a few votes. The frequent topics have over 10,000 votes.
I am including the link here and encouraging everyone to do the easy sign in portion, then search Lyme, and vote "yes" on those that each person agrees with.
Of course the same search can take a voter to trains or Chronic Fatigue for example. Makes voting easy.
posted
That was easy to do - ie, post a question. There are 16 questions now on the topic of Lyme. But I could only see three of them, to vote for.
So let's all go there and at least post a question for the incoming administration...
Posts: 13171 | From San Francisco | Registered: May 2006
| IP: Logged |
posted
Ok, Ed, I am definitely site-challenged tonite. I type in Lyme in questions and then three come up. How do you get to see more than the three?
Thank you, and welcome to lymenet!
PS Here's how you could get Medical posters over here. You make a Medical post, and put subliminal messages in it.
Like: Cure for Lyme! (You WILL want to go to Activism and post a question on Lyme in my thread Vote about Lyme to Obama in change.gov. Yes, you WILL)
Promising cure research on the horizon! (REMEMBER to vote for your favorite Lyme suggestions at my thread in Activism, Vote about Lyme to Obama in change.gov. You will REMEMBER)
Posts: 13171 | From San Francisco | Registered: May 2006
| IP: Logged |
Lets hope that many many many more will join and spend a few minutes to write him a strong message on Lyme and its horrific efects which lead to many other problems.
PS: Use the Search for Lyme on the Left Side, not the upper right.
Thank You To All.
Best regards, Eric
Posts: 570 | From philadelphia, pa | Registered: Dec 2008
| IP: Logged |
tdtid
Frequent Contributor (1K+ posts)
Member # 10276
posted
I did just go out and register, cast a bunch of positive votes on the Lyme questions but need my brain cells to add another question.
Perhaps later in the day or week since right now, I'm in a fog, but know this sounds important.
Thanks for posting this.
Betty G, is this what you were discussing on my Caring Bridge site? Thanks for the heads up if so.
Cathy
-------------------- "To Dream The Impossible Dream" Man of La Mancha Posts: 2638 | From New Hampshire | Registered: Oct 2006
| IP: Logged |
posted
thanks ed for posting this here!!! after we talked, i lost your email and was trying frantically to find it, but both places it had been deleted!!!
cathy, YES, this is what i was going to post on your caring bridge site. could you or one of your family copy the above and post on YOUR site? this way other lyme patients visiting will find out about this too!
i'm going to copy and send to my lyme group list so more will find out on this!
33 questions....copying all below, and then i'll ask mine! PLEASE VOTE ON EACH QUESTION! ***************************************** **************************************** big thanks!
"Lyme Disease is often diagnosed as MS, ALS, Parkinsons, FM, Chronic Fatigue, Autism, dementia: all labels assigned to patients who later recover with antimicrobials. Will you support fed bills to protect doctors, screening and support HR 676?" Woody, Hood River, OR - Health Care View response Post a response
This submission was flagged because people believe it is inappropriate. Learn more
Flagged Flag as inappropriate Remove
"Lyme disease is the largest tick borne illness in America, folks are very ill and can't get treatments/help from their doctors or the government. Does the federal government plan to offer help to the millions afflicted with this horrible disease?" Jim, Jax, FL - Health Care View response Post a response
This submission was flagged because people believe it is inappropriate. Learn more
"Will the CDC be reformed so that insurance providers will not have an influence on medical guidelines? We need treatments and research available for infectious diseases like Lyme Disease and other tick borne illness that are to epidemic proportions?" Boejr, Basking Ridge, NJ - Health Care View response Post a response
"Will you address the issue of chronic Lyme disease, as a persistent infection, a debilitating neurological illness effecting thousands of Americans, young and old? Research is distorted by physicians who deny Lyme as a chronic, complex infection." Sandy B, Southbury, CT - Health Care View response Post a response
"As a chronic patient with Lyme borreliosis, I ask when will the US take a lead in diagnosis/ treatment of this crippling infectious disease. long term treatment is denied, tests are a joke, Blumenthal uncovered patent/test kit conflicts. please help." andromeda 13, UK - Health Care View response Post a response
"Will the Obama health team look at Integrative Medicine; the use of diagnostic labs that are currently considered inelibable by medical insurance? ie cortisol testing, blood test for Lyme wihtout a cell wall, Brain Hormone testing," Interative Medicine Pratitioner, Minneapolis, MN - Health Care View response Post a response
"Will someone in your administration please look into the Lyme Disease Treatment Controversy? This is the fastest growing infectious disease in the country, infecting more than AIDS. Treatment usually not covered. Hundreds of thousands debilitated." Clark, Millersburg, PA - Health Care View response Post a response
"OUR MEDICAL SYSTEM BURIES ANY REPORTS FACTS THAT DO NOT SELL THEIR DRUGS SURGERY CHEMO RADIATION. ALTERNATIVE SYSTEMS HAVE CURES FOR AIDS CANCER LYMES ETC. BUT THE AMA DISTORTS AND CONFUSES US ABOUT THEIR COMPETITORS. CAN WE BE EDUCATED FACTUALLY?" DareToLearn, Lancaster,Ca. - Health Care View response Post a response
"Will Obama lookin into the proper treatment of Lyme disease?" drglennb, West Chester, Pa - Health Care View response Post a response
"What will you do to get insurance companies to reevaluate treatment guidelines for lyme disease, and get goverment/other orgs to fund more serious research on this epidemic disease? Too many are suffering long term effects and can't get treatment." Ann G, NY - Health Care
"Please explore the growing plague of tick borne diseases, like Lyme disease, and the huge effort to deny its existence by medical groups that apparently would benefit (in some way?$) by making sure it's not treated appropriately. Thank you." Mary, 55410 - Health Care View response Post a response
"Why does Lyme disease get shoved under the insurance carpet, when it is well known that the disease was brought to the USA by the CDC on Plum Island." Eric, 50036 - Health Care View response Post a response
"Lyme disease is having a serious impact on our society and is far more prevelant than many believe. It should be looked at along with any health care reform - both are in need of an honest look. Meanwhile, patients suffer..." K, Colorado - Health Care View response Post a response
"What will you do as president to help the country deal with the spreading epidemic of Lyme disease and coinfections?" sfrobin, San Francisco - Health Care View response Post a response
"Why is Lyme dis. (LD) treated with such ignorance & hostility? Drs. don't acknowledge LD. If treated when first seen,LD may be cureable. If treatment is delayed,LD becomes a death sentence. Please investigate the IDSA's LD Panel, before they're sued." jelainep, Tampa, FL - Health Care View response Post a response
"Lyme Ds. is dealing with agents that are difficult to dx.& treat if not caught early.I have just finished reading your Book'The Audicity of Hope'. I would like to feel that the victims of this disease can have the audicity to hope for an earlier dx." Adj. Prof. Emeritus Carol, Florida - Health Care View response Post a response
Anonymous This submission has been retracted by the author - Economy View response Post a response
"When will the USA become fully educated about the reality and devastation of Chronic Lyme Disease? When will it finally be acknowledged and not dismissed or misdiagnosed as fibromyalgia or chronic fatigue syndrome or a number of other ailments?" Mom of sick kids, NY State - Education View response Post a response
"CDC is currently responsible for the poor testing, improper education and horrible treatments for Lyme Disease while Millions of Americans are misdiagnosed and are Suffering. How can this be allowed? After all these years there is still no Cure." val, pennsylvania, usa - Economy View response Post a response
"Dear Mr. President-Elect,
As you are an agent of "change" I'm hoping you can help change how those with Chronic Lyme Disease are diagnosed and treated by doctors and ins. companies. Please visit lymediseaseassociation.org to get an overview." Mom of sick kids, NY State - Health Care View response Post a response
"Chronic Lyme disease is a cold reality in the US. Many with entrenched infections are declining, suffering without proper treatment. We need unbiased guidelines for diagnosis & treatment of tick borne diseases as per Lyme bill HR 741." R, Virginia - Health Care View response Post a response
"Lyme Disease has severe long term effects and the Medical Community's poor understanding & the terrible testing as well as short unrelaible treatments. A Major Epidemic Lyme affects Millions & leads to Parkinsons, MS, ALS, Arthritis, & many Cancers" Eric, Philadelphia, PA - Health Care View response Post a response
"Hopeullfy the Lyme Disease Truth will be released to the public soon as it truly is a Huge epidemic & Millions of people are infected while Millions more are misdiagnosed into other illnesses. Lyme actually Causes MS, FM, Parkinsons, Chronic Fatigue" val, pennsylvania, usa - Health Care View response Post a response
"Please watch the Lyme Disease documentary "Under Our Skin". Here lies the truth about this disease. It is available at Underourskin.com, and will be released in select theaters in March. Thousands of us are suffering from this debilitating illness." Hopeful - Health Care View response Post a response
Anonymous This submission has been retracted by the author - Health Care View response Post a response
"Millions of people are diagnosed with multiple sclerosis, fibromyalgia, Alzheimer's, chronic fatigue syndrome, parkinsons, spinal disorders & other degenerative diseases most all start with Lyme Disease. There is no Truth with CDC & peolple Suffer" val, pennsylvania, usa - Health Care View response Post a response
"Would someone in your organization look into Lyme disease and why it is so misunderstood and incorrectly treated by so many doctors!? Lyme disease ruined my life and I also had to go out of state to find treatment! Thank you." Rich - Health Care View response Post a response
"Will the Obama team actually & truly look into trying to CURE Lyme Disease, rather than shoving it under the carpet as most officials have done, which appears to be a BioWeapon type of disease? It clearly leads to many other irreversable illnesses" Eric, Philadelphia, PA - Health Care View response Post a response
"Thousands of people are suffering and dying from complications of Lyme Disease in the US. The insurance industry refuses to treat anyone longer than the CDC "initial infection" standard or for 2-4 weeks. Babies are being born with it. Please Help." Peedie, So. California - Health Care View response Post a response
"Chronic Lyme disease has disabled me/put my family in major medical debt. Will the Obama admin. put resources into 1)solving the Lyme disease controversy (research, objectivity in gov't health organizations) & 2)fixing the broken healthcare system?" MOLLY, N. NORTHMOUR, MAINE
Anonymous This submission has been retracted by the author - Health Care View response Post a response
Anonymous This submission has been retracted by the author
"Why is medical LOBBYIST money allowed to influence senators/house reps who CHAIR health committees, like NJ FRANK PALLONE; almost half billion $$! We chronic lyme patients do NOT have money to buy their votes; it's paid to drs. for OUT OF POCKET $." BettyG,, Iowa lyme advocate - Health Care View response Post a response
"CDC doesn't accept POSITIVE western blot igm/igg nos 31/34; they aren't counted in criteria to determine if you MEET positive/negative results! Need to be counted since that means million+ are NOT counted on LYME DISEASE STATISTICS PER STATE! wrong" BettyG,, Iowa lyme advocate - Health Care View response Post a response
"CDC rules need to use ILADS, INTL. LYME ASSOCIATED DISEASES, guidelines for treatment. Insurance cos. need to PROMPTLY use them, and REIMBURSE US FOR APPTS., TREATMENTS, MEDS, like they do ALL CANCER/AIDS/HIV patients. GRANDFATHER CLAUSE needed." BettyG,, Iowa lyme advocate - Health Care View response Post a response
"Pres. Obama, We need an IMMEDIATELY for our 2 lyme disease bills, S 1708 and HR 741, to be PLACED ON SCHEDULE to be discussed on creating lyme disease task force, research/education, passed by both senate and house, and promptly signed by you. Thx." BettyG,, Iowa lyme advocate - Health Care View response Post a response
There are now 36 questions. Great job everyone! If you voted
early, go back every so often and vote questions that are new.
Just as a couple of posters have stated, vote on all that you like or
agree with.
Could those who are knowledgeable keep going to "medical" and
referring posters here.
Great work everyone. I hope they listen.
Ed
Posts: 7 | From Portland Oregon | Registered: Jun 2007
| IP: Logged |
bettyg
Unregistered
posted
54 questions now; just found that on 4 i posted; 3 are gone??? unless they are further down; i don't know why? anyone have any ideas??
"Pres. Obama, We need an IMMEDIATELY for our 2 lyme disease bills, S 1708 and HR 741, to be PLACED ON SCHEDULE to be discussed on creating lyme disease task force, research/education, passed by both senate and house, and promptly signed by you. Thx." BettyG,, Iowa lyme advocate - Health Care View
"Lyme Disease patients need leadership in Washington. Please pledge to support current federal legislation to support Lyme patients and their treating physicians." Alexia, Illinois - Economy View response Post
"Not just Lyme, but all of the bacterias that got their start in the 1970's. These mycoplasmas and lyme are going to break our insurance companies. Our nation is going to be completely disabled adults that can't work and children unable go to school." bab - Economy View response Post a response
"Truly appauled at the way Lyme disease is being treated! It's inhumane! Please look into the current guidelines & testing. The doctors that can help us are being pushed out and our treatments are being denied by insurance. Children are dying! HELP!" AMY, YOUNGSTOWN, OHIO....
"Not just Lyme, but all of the bacterias that got their start in the 1970's. These mycoplasmas and lyme are going to break our insurance companies. Our nation is going to be completely disabled adults that can't work and children unable go to school." bab - Economy View response Post a response
"All doctors agree that any one band to show positive specifically for Lyme Disease on WB test plus any clinical symptoms in a patient is 100% clear evidence & more than enough proof that the person is infected with Lyme. But CDC says otherwise, why ?" josh md, usa - Economy View response Post a response
"CDC rules need to use ILADS, INTL. LYME ASSOCIATED DISEASES, guidelines for treatment. Insurance cos. need to PROMPTLY use them, and REIMBURSE US FOR APPTS., TREATMENTS, MEDS, like they do ALL CANCER/AIDS/HIV patients. GRANDFATHER CLAUSE needed." BettyG,, Iowa lyme advocate - Health Care View response Post a response
"We, members of the US Military, fight for you everyday. Will you please fight for us whose lives/careers are in ruins because of Lyme Disease? The military won't even ackowledge the wide spread existance of the disease. Educate our doctors PLEASE!" FuturePresident, Oak Harbor, WA - Health Care View response Post a response
"Why is medical LOBBYIST money allowed to influence senators/house reps who CHAIR health committees, like NJ FRANK PALLONE; almost half billion $$! We chronic lyme patients do NOT have money to buy their votes; it's paid to drs. for OUT OF POCKET $." BettyG,, Iowa lyme advocate - Health Care View response Post a response
"Who really controls the Health Care System ? Should it not be by all the people who are geuinely sick ? Rather than insurance companies who love to collect payments but clearly refuse to pay. Lyme disease is one clear example of such." josh md, usa - Economy View response Post a response
"LYME Disease is now going to be the Biggest WorldWide Epidemic, far outweighs HIV/Aids. People suffer, insurance comp. deny the proper treatments and payments, and family lives are ruined. CDC critiria stinks as their guidelines for Lyme disease." josh md, usa - Health Care View response Post a response
"I am asking you, when you are president to please have a cure for Lyme being researched. Please understand that this is an "evil bug" that stays with us for ever, if not treated within the first 6 weeks. PLEASE, PLEASE MAKE LYME DISEASE A PRIORITY." AmieM, Colorado - Health Care View response Post a response
I'M IN THE MILITARY, and have had to seek treatment for lyme disease in the CIVILIAN community.
what is the plan of action from the government to study, treat, and recoginize this disease as DISABLING. LYME MARINE,... HEALTH
"what can we do to get dr, oz on ophray to discuss lymes disease??" mary, NY - Health Care View response Post a response
"CDC doesn't accept POSITIVE western blot igm/igg nos 31/34; they aren't counted in criteria to determine if you MEET positive/negative results! Need to be counted since that means million+ are NOT counted on LYME DISEASE STATISTICS PER STATE! wrong" BettyG,, Iowa lyme advocate - Health Care View response Post a response
"Currently, our active duty men and women can not receive treatment for Lyme and it's associated diseases at their local Military Treatment Facility.
They become disabled and get kicked out of the military. Will you help them get the care they need?" Military Lyme Support, McGuire AFB, NJ - Health Care View response Post a response
This submission was flagged ***************************because people believe it is inappropriate. Learn more
"Will you regulate the insurance companies? Treatment Guidelines for Lyme Disease is for Doctors. NOT the insurance co to use as a denial process.
If my dr. and I agree on treatment, then insurance co. should pay! CHERYL, KANSAS, .. health
FOLKS, PLEASE VOTE ON EVERY QUESTION SHOWN!!! i found my other 3 questions; they were mixed up in the rest that i post above!
IP: Logged |
posted
llyme, SORRY, but we all added our comments in the few 2-3 days that we did last week; it was OPENED! or we would NOT have been able to leave our brief questions for obama.
speaking of that site, i received this in today's mail from them ... --------------
Dear Betty,
Last Thursday, President-elect Barack Obama gave a major speech outlining his plan for getting us out of this economic slump we're in, called the American Recovery and Reinvestment Plan. It's a far-reaching and aggressive plan, and we think it's what the economy needs to get going again.
But it's going to take a lot of work to get the plan approved, and your involvement is essential.
That's why we asked some of the leading members of the Transition's policy teams to sit down and talk a bit about it -- why it's necessary, how it will work, and how we'll make sure it's as efficient and effective as it is bold.
We compiled their responses into a short video, touching on each of the major elements of the plan. Watch the video now at ************************
Some parts of the plan might already be familiar to you. The plans for rebuilding infrastructure, expanding renewable energy capacity, and overhauling health care and education all build upon promises that President-elect Obama made during the campaign.
We're committed to keeping those promises -- and now, given the challenges we face, they're more important than ever.
We're counting on your help and your support.
Thanks,
John
John D. Podesta Co-Chair Obama-Biden Transition Project
[email protected] --- Please note that replies to this email will not be answered.
**********
for those of you who wrote questions for the above, did you receive also this form letter from them? thanks
IP: Logged |
quote:Originally posted by Toodie: It's still open. Search at the left hand side not up top on right hand side. 44 Questions now. Spoke too soon. You can view the quesitons, but this one is now closed as well. Robin http://change.gov/page/content/openforquestions20081229/
Last Thursday, President-elect Barack Obama gave a major speech outlining his plan for getting us out of this economic slump we're in, called the American Recovery and Reinvestment Plan. It's a far-reaching and aggressive plan, and we think it's what the economy needs to get going again.
But it's going to take a lot of work to get the plan approved, and your involvement is essential. That's why we asked some of the leading members of the Transition's policy teams to sit down and talk a bit about it -- why it's necessary, how it will work, and how we'll make sure it's as efficient and effective as it is bold.
We compiled their responses into a short video, touching on each of the major elements of the plan.
Some parts of the plan might already be familiar to you. The plans for rebuilding infrastructure, expanding renewable energy capacity, and overhauling health care and education all build upon promises that President-elect Obama made during the campaign.
We're committed to keeping those promises -- and now, given the challenges we face, they're more important than ever.
We're counting on your help and your support.
Thanks,
John
John D. Podesta Co-Chair Obama-Biden Transition Project
--- Please note that replies to this email will not be answered.
Posts: 570 | From philadelphia, pa | Registered: Dec 2008
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
![[group hug]](graemlins/grouphug.gif)
![[kiss]](graemlins/kissing.gif)
![[confused]](graemlins/confused.gif)
Printer-friendly view of this topic