pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
Dear Friends,
Dr. Jones doesn't need any promotion from me - we all know he is a saint. I want to concentrate on how this particular case is unique and worth defending - because it is not just about Dr. Jones, it is about the Lyme disease standard of care and our access to Lyme-literate doctors.
Yale is our historic enemy, home to Allen Steere when he was doing his original study in Old Lyme, Connecticut and now home to Eugene Shapiro, MD, the expert witness that the Connecticut Medical Board prosecutor will use in the Jones case. Shapiro has been widely quoted in the media with such gems as:
"People would rather say, 'I think I have Lyme disease' than 'I'm getting old and tired.'" [ELLE magazine, December, 2000];
"It's a lot more socially acceptable to have Lyme disease than to be depressed," [Healthscout, Jan 15, 2001] and, from his grand rounds at Stanford University School of Medicine;
"This isn't AIDS that we're talking about or preventing, folks. It's not a big deal if you get Lyme disease. It's easy to treat and cure." [09-24-04]
Eugene Shapiro is also a major player in the Infectious Disease Society of America (IDSA) and is on the panel currently working on new practice guidelines for Lyme disease that IDSA intends to publish this spring.
Standard of Care or Standard of Carelessness?
The mainstream standard of care for Lyme disease in the US is largely dictated by the IDSA. Currently that treatment is limited to 2-3 weeks. Attendees at a recent meeting of the IDSA were informed that new guidelines will recommend 10 DAYS of treatment! The IDSA also does not believe in chronic Lyme disease but talks about "post-Lyme syndrome." The panel has indicated that they are not interested in any input from Lyme patients or the doctors who treat us.
Access to Care
Patients across America and abroad have trouble finding a Lyme-literate doctor to treat them. Most are either closed to new patients or booked for months in advance. Every time one of our doctors is persecuted, it has a deterrent effect on other doctors being willing to treat Lyme disease. Imagine if Dr. Burrascano had lost his case!
Telemedicine is a hot new topic and plays an important role in the treatment of Lyme where there are so few treating physicians and they are often located far from their patients. It is neither practical nor economically feasible for patients to travel hundreds or even thousands of miles routinely for treatment. Telemedicine issues are central to this case, as Dr. Jones was treating a child in Nevada.
It will be enormously important if Dr. Jones can win his case, not just to vindicate "Saint" Jones, but to preserve our access to care.
Dr. Jones has treated over 7,000 children and is the only training physician for pediatric Lyme and routinely consults with doctors treating children. The loss of his work to the community would cut deeply.
It is wonderful that Dr. Jones, at his advanced age, is willing to stand up and fight! He has assembled a great defense team and has the advice, counsel and help from some of our best and brightest experts in the treatment of Lyme. We must stand with him! Please give as generously as you are able.
"The Dr. Charles Ray Jones Legal Defense Fund" C/O George Heath, III (CPA) 26 Fairlawn Drive Wallingford, CT 06492 203-782-4343 (work)
Please make your checks out to the "Charles Ray Jones Legal Defense Fund" and be sure to write "GIFT" in the memo section of the check.
Legal defense funds are not tax deductible. If you have further questions, please contact Dr Jones' office at 203-772-1123.
Thank you all.
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
| IP: Logged |
lightfoot
Frequent Contributor (5K+ posts)
Member # 2536
posted
Thanks, Phyllis!!
I'm passing it on.....
Healing smiles...lightfoot
-------------------- Healing Smiles.....lightfoot Posts: 7228 | From CO | Registered: May 2002
| IP: Logged |
posted
Phyllis, Thanks for posting more about the context of this struggle.
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
| IP: Logged |
elena
Unregistered
posted
UP!
quote:Originally posted by pmerv: Dear Friends,
Dr. Jones doesn't need any promotion from me - we all know he is a saint. I want to concentrate on how this particular case is unique and worth defending - because it is not just about Dr. Jones, it is about the Lyme disease standard of care and our access to Lyme-literate doctors.
Yale is our historic enemy, home to Allen Steere when he was doing his original study in Old Lyme, Connecticut and now home to Eugene Shapiro, MD, the expert witness that the Connecticut Medical Board prosecutor will use in the Jones case. Shapiro has been widely quoted in the media with such gems as:
"People would rather say, 'I think I have Lyme disease' than 'I'm getting old and tired.'" [ELLE magazine, December, 2000];
"It's a lot more socially acceptable to have Lyme disease than to be depressed," [Healthscout, Jan 15, 2001] and, from his grand rounds at Stanford University School of Medicine;
"This isn't AIDS that we're talking about or preventing, folks. It's not a big deal if you get Lyme disease. It's easy to treat and cure." [09-24-04]
Eugene Shapiro is also a major player in the Infectious Disease Society of America (IDSA) and is on the panel currently working on new practice guidelines for Lyme disease that IDSA intends to publish this spring.
Standard of Care or Standard of Carelessness?
The mainstream standard of care for Lyme disease in the US is largely dictated by the IDSA. Currently that treatment is limited to 2-3 weeks. Attendees at a recent meeting of the IDSA were informed that new guidelines will recommend 10 DAYS of treatment! The IDSA also does not believe in chronic Lyme disease but talks about "post-Lyme syndrome." The panel has indicated that they are not interested in any input from Lyme patients or the doctors who treat us.
Access to Care
Patients across America and abroad have trouble finding a Lyme-literate doctor to treat them. Most are either closed to new patients or booked for months in advance. Every time one of our doctors is persecuted, it has a deterrent effect on other doctors being willing to treat Lyme disease. Imagine if Dr. Burrascano had lost his case!
Telemedicine is a hot new topic and plays an important role in the treatment of Lyme where there are so few treating physicians and they are often located far from their patients. It is neither practical nor economically feasible for patients to travel hundreds or even thousands of miles routinely for treatment. Telemedicine issues are central to this case, as Dr. Jones was treating a child in Nevada.
It will be enormously important if Dr. Jones can win his case, not just to vindicate "Saint" Jones, but to preserve our access to care.
Dr. Jones has treated over 7,000 children and is the only training physician for pediatric Lyme and routinely consults with doctors treating children. The loss of his work to the community would cut deeply.
It is wonderful that Dr. Jones, at his advanced age, is willing to stand up and fight! He has assembled a great defense team and has the advice, counsel and help from some of our best and brightest experts in the treatment of Lyme. We must stand with him! Please give as generously as you are able.
"The Dr. Charles Ray Jones Legal Defense Fund" C/O George Heath, III (CPA) 26 Fairlawn Drive Wallingford, CT 06492 203-782-4343 (work)
Please make your checks out to the "Charles Ray Jones Legal Defense Fund" and be sure to write "GIFT" in the memo section of the check.
Legal defense funds are not tax deductible. If you have further questions, please contact Dr Jones' office at 203-772-1123.
Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
I do not know Sheila, but this was sent on to me by a friend. Please note that this is dated Jan. 2, so I presume it is the latest notice from Dr. J.
[quote] Sent: Monday, January 02, 2006 11:51 AM Subject: Important update on letters on behalf of Dr. Jones
Dear All,
I have just spoken with Dr. Jones and he has requested that I share the following information with you: A letter will be going out shortly from him to his patients via snail mail, explaining his current situation and providing relevant information for those who want to help. He has been very touched and refueled by the many letters patients already have sent directly to his office. He reads every single one!
In the meantime, patients, professionals and parties interested in writing letters on his behalf should direct them to his new attorney, as follows:
Elliott B. Pollock, Esquire Pullman & Comely, LLC 90 State House Square Hartford, CT 06103-3702
Letters already sent to Dr. Jones' previous attorney, Carl Porto, will be forwarded as well.
The post is from Karen Gaudian, co-chair of the Ridgefield (CT) Lyme Disease Task Force.
Hi Everyone, It appears there are multiple addresses for mailing letters for Dr Jones defense. The following is a letter we worked on with Mr Pollack so we can help review and sort the letters. Please forward this information to your lists so there is no confusion. Let me know if there are any questions.
Thank you all, sorry for the mix up.
Karen
The attorney for Dr. Jones has changed. Here's the update.
The attorney has asked for letters (not e-mails) from Dr. Jones' patients who have concrete and verifiable information that may be helpful with this case. These letters should include information describing the care their children were given and problems they may have encountered prior to seeing Dr Jones. For example specific accounts where a doctor may have not properly or accurately diagnosed their children, delaying treatment which led to a verifiable chronic or severe illness. These accounts have to be very factual and as brief as possible (try to keep under 2 pages) if they are to be used. You will be contacted if your account is to be used to assist Dr. Jones.
Send letters to
Dr Jones Po Box 556 Ridgefield, CT 06877Posts: 8337 | From the other shore | Registered: Jul 2002
| IP: Logged |
posted
Or maybe... "standard of couldn't-care-less"?
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
| IP: Logged |
posted
Staying power. The "other guys" have it, do we? It's been such a long struggle for us, but we have no other choice but to continue fighting for our infinitely precious LLMDs as long as the attacks against them continue. Without them...... Please send your contribution now!
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
| IP: Logged |
posted
Please see Ellen's new thread from 2/24 updating us on Dr. Jones' case.
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
| IP: Logged |
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
| IP: Logged |
posted
Please do not delay. Your contribution is needed now.
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
| IP: Logged |
Linda LD
Frequent Contributor (1K+ posts)
Member # 6663
posted
I have sent two checks--
Ya'll aren't gonna let me be the only one that can brag about that, right?
L
Posts: 1171 | From Knoxville, TN US | Registered: Dec 2004
| IP: Logged |
Just to let you know that there is a second member of the "Once is Not Enough Club" in our midst and probably more.
How about it folks? It feels so good and it isn't fattening........!!!!!
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
| IP: Logged |
My next donation to Dr. J.'s fund will be in honor of you!
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
| IP: Logged |
posted
LindaLD, Just wanted to thank you for posting about your contributions to Dr. Jones' defense fund.
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
| IP: Logged |
posted
Please grab your checkbook, pen, and a stamp right now and send a contribution to Dr. Jones' legal defense fund. To contribute by credit card go to http://www.DefendLymeDoctors.com
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
| IP: Logged |
pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
I write all these letters and send emails around to many people and groups, sometimes I forget to DO the thing I am emailing about! But I did finally send a check to Dr. J. and then a while later, another one. It's not too late.
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
| IP: Logged |
posted
Phyllis, Thanks for all of your work to help Dr. Jones. It might be prudent to do some spot checking to see if your emails requesting contributions were received. Unfortunately in the past communications have had a way of going awry at critical times.
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
| IP: Logged |
pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
how would you suggest I "check"?
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
| IP: Logged |
posted
Phyllis, How about telephoning a few patients who are both on your email list and for whom you have telephone numbers?
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
| IP: Logged |
posted
Has Dr. Jones received ***your***** full support?
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
| IP: Logged |
posted
Doc J's hearing was very sobering. It was difficult watching this man be questioned regarding his impecable care practice of children shunned by the medical community. Doc J was very composed, articulate and caring - as always.
There will be at least two more hearings --
I'm glad there is time to prepare between sessions.
Everyone please remember to garner as many donations to the legal fund as possible!
Doc J has a quality team but Doc J is under fire and this is costing a great deal of money (medical review hearings are not covered by any kind of insurance) That's one way they try and break the knees of our LLMD's - by way of the financial devastation these proceedings bring.
*************************************************
DEFENCE FUND CONTRIBUTION INFO (updated by Ellen in February):
Hi folks, Thanks to all of you who have been helping Dr. Jones with your donations and letters.
There are a number of important things I need to tell you today:
1) CHECKS FOR THE LEGAL DEFENSE FUND FROM NOW ON SHOULD BE MADE OUT TO THE DR. CHARLES RAY JONES LEGALDEFENSE FUND AND MAILED TO ACCOUNTANT GEORGE HEATH. Sorry to have to make a change again. But don't worry, checks sent to the attorney as previously requested, will make it into the fund.
Make Donations payable to "The Dr. Charles Ray Jones Legal Defense Fund"
Mail to: C/O George Heath, III (CPA) 26 Fairlawn Drive Wallingford, CT 06492
Note "gift" in the memo field
2) A WEBSITE FOR DR. JONES IS NOW READY TO TAKE PAYPAL CREDIT CARD CONTRIBUTIONS TO THE DEFENSE FUND. The content of the site is still developing, but the basics and the paypal are up now. http://www.DefendLymeDoctors.com
****snip*****
Please keep focussed on the Legal Defense Fund. Contributions have really fallen off after the initial response. So, if you have not yet donated, or if you can donate again, please try to help. Thanks, Ellen
Mo
-------------------- life shrinks and expands in proportion to one's courage -- anais nin Posts: 8337 | From the other shore | Registered: Jul 2002
| IP: Logged |
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
| IP: Logged |
kgg
Frequent Contributor (1K+ posts)
Member # 5867
posted
Sent a check out today.
Karen
Posts: 1685 | From Maine | Registered: Jun 2004
| IP: Logged |
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
| IP: Logged |
posted
Got persistence? Good. You probably are going to need it to be a sucessful Lyme patient. First, you very likely will need persistence to get diagnosed and treated adequately and secondly you will need to be persistent in supporting the legal defense funds of LLMDS under unjust atttacks to make sure that you have an LLMD who is still allowed to treat you. Please help Dr. Jones now by sending a check.
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
| IP: Logged |
posted
What would have happened to pioneers such as Gandhi or Mandela or MLK if their supporters gave up when the going got tougher? Dr. Jones needs our help. Please be there for him. Please send a check for his legal defense fund.
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
| IP: Logged |
Linda LD
Frequent Contributor (1K+ posts)
Member # 6663
posted
I just found a check for Dr. jones!
It never got mailed because I didn't have a stamp!!! LOL--not sure how long it has been hanging around. I'm just gonna put two old stamps on it--I will never get it together enough to go to the post-office and get however one cent stamps I need!
God bless Dr. Jones! L
Posts: 1171 | From Knoxville, TN US | Registered: Dec 2004
| IP: Logged |
posted
We ***must*** stay focused on getting money sent to Dr. Jones' legal defense fund right now. We can't afford to get distracted. Focus,focus, focus till we get out of the danger zone on this, then we can think about long term plans.
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
| IP: Logged |
bettyg
Unregistered
posted
Reno's Back posted in general about Bill Gates giving to CHILDREN'S CHARITIES.
I just sent the below to Washington state lyme support group leader.
Do any of you have any direct connections with Bill, wife, or any of his VIPs in his company?
Reno, I took the time and just emailed this to Alexis, Washington's lyme support group leader!
Alexis, please read the below please....thank you!
posted 15-06-2006 11:20 PM by RENO'S BACK
Thank-Goodness I'm a news junkie! I think it was CNN who announced that Bill Gates is going to turn over control of Microsoft in 2 years, so he & his wife, Melinda, could focus on Charitable Organizations--he's worth $32-38 B-I-L-L-I-O-N!! WOW! And he's only 50!
He & his wife opened a VERY HIGH TECH (experiment)school in Arizona... Children & the plights they face are their main focus ; I wish that they knew about our Dr.Jones!
Sweet Dreams~Reno's Back www.lymenet.org message board -------------------- ~That which doesn't kill you only makes you stronger. ------------------------------- Posts: 126 | From: PA | Registered: May 2005 | IP: Logged
The above link is about Dr. Charles Ray Jones, Conn. LLMD for CHILDREN! He is being investigated by Conn. Dept. of Health. They are trying to take away his medical license! We can't allow that to happen.
Can you or a group of you from your support group contact Bill Gates about Dr. Jones need for $$ for his defense funds?
We've sent money once thru our www.lymenet.org message board members.
He's got another hearing June 22; funds will be depleted after that hearing date!
Reno's 1st note said he wants to be involved in CHILDREN'S CHARITIES, and we have our CHRONIC LYME CHILDREN ... a perfect choice for him to get involved NOW if at all possible.
Does anyone in your group have any connections with Bill or any VIPS in his org?
We've got to act NOW; funds needed in 1 week! I saw on another post, he has 2 more hearings after this in Sept.
Alexis, are you able to help us ALL the chronic lyme CHILDREN out by contacting Bill Gates?
I'm copying Lyme Disease Assn. President Pat Smith and lyme activitst, Lucy Barnes aka Tincup so they are aware of the request I've made on behalf of all LDA patients nationwide.
Betty Gordon, Ames, Iowa 34 yrs. misdiagnosed; almost 2 yrs. into lyme treatment with no progress to date!
IP: Logged |
posted
I hope that all of you have seen the latest posts from Kay Mass listing some of the fund-raising projects for Dr. Jones that are now in place. See the special opportunity for chocolate lovers!
Please choose your favorite way(s) of contributing to Dr. Jones' fund.
A significant amount of money is needed immediately to allow Dr. Jones' case to move forward beyond next week.
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
| IP: Logged |
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
| IP: Logged |
posted
LLMDs are the cornerstone to a future if you have chronic Lyme disease. Don't let your life collapse because you haven't done everything possible to keep these doctors helping us.
Please! Send a contribution to Dr. Jones' legal defense.
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
| IP: Logged |
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
| IP: Logged |
Haven't been able to print-out the illuminating interview about Dr. Jones by Pam W. that was published in The Lyme Times." Can you help?
It would be so helpful to have for fund-raising moments off-line.
-------------------- "Help Or Be Helpless" Please visit "Activism" board daily. See the threads regarding the IDSA Guidelines crisis and the threads about Dr. Charles Ray Jones and decide how best to help today! Posts: 1265 | From does not list | Registered: Jun 2004
| 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/