does anyone have a better email address? If so please let folks know!
Linda
Posted by lou (Member # 81) on :
Has this been approved by the people leading the charge?
Posted by Linda LD (Member # 6663) on :
No, no--sorry--never mind.
Linda
Posted by nan (Member # 63) on :
I think we will hear soon from the good people in charge of coordinating our response...and then we will have a clear idea where we are going with this.
Makes me nervous knowing this is coming up near the end of January!
Posted by Linda LD (Member # 6663) on :
I just can't stand sitting on my hands--I just want to do something--cause next week I may not have the energy...
L
Posted by sizzled (Member # 1357) on :
Please read the posts concerning Dr. J's attorney fees.
He needs to be represented by legal means. He needs funds to retain those legal means.
Please help in any way you can.
Posted by Southampton Lyre (Member # 8310) on :
quote:Originally posted by sizzled: Please read the posts concerning Dr. J's attorney fees.
He needs to be represented by legal means.
I share Linda's concerns. Of course we need to raise money for Dr Jones legal battle, but I don't believe the legal road alone can save him, however good his lawyer. This is because Lyme is a **political issue**, and the view represented by Shapiro and the Steere camp has the backing of the government, even though it is a pack of lies.
I personally feel it is not so much the Medical Board that needs to be contacted, but the media. Let the Medical Board find out how much Dr Jones is treasured by thousands of families, and how much Shapiro is despised, and why, when they open their morning newspaper!
Southampton Lyre
Posted by lou (Member # 81) on :
For a change, I agree with SL, but only part of the way. This is political and I don't think we can afford to keep shelling out for docs wrongly accused while the rats go free. This is all defense and expense.
However, the major media nearly always gets it wrong on the controversy part of lyme, so contacting them is liable to bring on the wrong kind of articles, if the past is any indication. And we don't need a lot of loose cannons careening around on this. We need a coordinated response. Don't ask me what, I get so furious when I think about this whole situation, crucifying good docs, letting people's lives and finances be ruined by what is essentially a botch of medical establishment, instigated and financially enforced by the govt.....
Posted by Linda LD (Member # 6663) on :
O.K.
I've been good and patient.
Now I understand we aren't even having a rally...
So far I haven't seen any leadership--what are we suppose to be doing to help Dr. Jones?
And, "Yes!" I already sent my letter and money.
Linda
Posted by Svengali Eyes (Member # 6118) on :
If you were in trouble.....would you welcome the efforts of a whole bunch of folks you didn't know...who don't know the particulars...and WHO do not have to suffer the consequences?
I wouldn't.
Posted by sofy (Member # 5721) on :
Good intensions are not enough. In my youth I did things I thought would help just to find out not only did it not help but it caused harm.
This situation has the same potential. I know nothing about the medical, legal and political process involved and to act on my good intensions could cause harm so I will do nothing until I hear from those who are in charge.
They have posted that $$donations are welcomed and written, signed statements are welcomed but only if sent to Dr. J attorney.
Sometimes the best we can do in not to act and this might be one of them.
Posted by robi (Member # 5547) on :
I attended Dr. z's hearing in virginia. Shewas exonerated of all charges. The Medical Board thanks the supporters for comming to the hearing. I believe we made a diffference in the favorable outcome. We certainely didn't hurt. There were 45 folks there supporting Dr. Z. We all remianed quite and respectful whe wearing "I SUPPORT DR. Z" signs.
I believe having folks there in support of Dr. J would help. No one in the audience spoke, but the presence was important.
robi
Posted by Southampton Lyre (Member # 8310) on :
quote:Originally posted by robi: I attended Dr. z's hearing in virginia. Shewas exonerated of all charges. The Medical Board thanks the supporters for comming to the hearing. I believe we made a diffference in the favorable outcome. We certainely didn't hurt. robi
Exactly! How can it possibly hurt, for the panel to see a large crowd of parents, some of whom have travelled great distances (and could carry placards stating it) to show how much Dr Jones has helped his patients.
Southampton Lyre
Posted by Southampton Lyre (Member # 8310) on :
quote:Originally posted by Svengali Eyes: If you were in trouble.....would you welcome the efforts of a whole bunch of folks you didn't know...who don't know the particulars...and WHO do not have to suffer the consequences?
I wouldn't.
With respect, Svengali, I think you're very wrong. The Lyme community DOES have to suffer the consequences. Even more, in a sense, than Dr Jones does.
By this I mean that the worst that could happen to Dr Jones is that he loses his license and is disgraced professionally - a grotesque miscarriage of justice. But for the Lyme community - it means something even worse - children who may never walk again, may never have the energy even to play dominos with a friend, nor the concentration, nor the understanding. Children in physical and emotional pain for the rest of their lives.
There is NO other paediatrician that parents can turn to.
And it's not just the children either. The attack on Dr Jones is an attack on our side **as a whole"". The Steere camp know that if they can get away with destroying Dr Jones, the most cherished LLMD of all, they can destroy ALL our LLMDs.
They tried to do that with Dr Burrascano, but had to back off, and a good part of the reason was the intense and very public campaign in his support - not JUST raising money for legal fees, though of course that's important. The Steere camp are frightened of bad publicity about what they have done - and their biggest nightmare is to have their crimes exposed in the media.
Southampton Lyre
Posted by Southampton Lyre (Member # 8310) on :
Lou. it's true that up till now the mass media has nearly always got it wrong. The reasons for that are the same reasons why a corrupt violin-playing rheumatologist who originally claimed Lyme was a virus and should not be treated with antibiotics, went on to become the Lyme god and ruin thousands and thousands of lives for the past 30 years, all over the world.
The same federal agencies backing the Steere camp have people in the most important health media ensuring that no truth about Lyme gets heard. Altman at the New York Times is a great example. As said before, it's no accident that both he and Steere and many others of the leading Steere camp protaganists were all trained in the CDC's Epidemic Intelligence Unit, a quasi-military unit.
I know you don't like it when I point that out, but the fact is that even the NIH has admitted on its website that they have been studying Lyme for years as a bioweapon.
What does it all mean? It means that information about Lyme disease is **militarily sensitive**, and the US and other NATO governments will try to ensure the media gives only the official line and nothing else - Lyme is easy-to-cure, not incapacitating by any means, hardly ever neurological, etc etc.
But there ARE ways to get round this. Not all media are subject to the same levels of control.
There is also a gradient of visibility that can get round obstacles like Altman on the NY Times and Klempner on the board of a major medical journal. By "gradient", I mean that the more vocal and visible a group of protesters are, the more the media are forced to cover what they are doing, and even if they try to cover it negatively, the message starts to filter through.
Also, some of the media, especially local, may not be subject to the same level of control as the larger ones. Favourable coverage from even one local Ct paper could educate thousands of people overnight. After all, we're talking about a state that even the Steere camp admit is hyperendemic.
Thousands of local Ct people finding out the truth as a result of one good article or local radio/TV interview, and then perhaps going back to their doctors to question previous diagnoses of "not Lyme" based on serology etc would create a local pressure on doctors to examine the issues. If even 10% of them came round to our way of thinking, that would create a pressure on the Medical Board NOT to carry out the Kangaroo court Shapiro is hoping for.
Shapiro and the others who are trying to take Dr Jones away from us are like a pack of wolves, without feelings. When was patience, calm and a trust that the other side will be fair and "play by the rules" ever a good tactic in fighting off a pack of blood-dripping wolves?
Remember the AIDS patients? They didn't get attention and recognition for their plight by being passive and staying at home.
Southampton Lyre
quote:Originally posted by lou: For a change, I agree with SL, but only part of the way. This is political and I don't think we can afford to keep shelling out for docs wrongly accused while the rats go free. This is all defense and expense.
However, the major media nearly always gets it wrong on the controversy part of lyme, so contacting them is liable to bring on the wrong kind of articles, if the past is any indication. And we don't need a lot of loose cannons careening around on this. We need a coordinated response. Don't ask me what, I get so furious when I think about this whole situation, crucifying good docs, letting people's lives and finances be ruined by what is essentially a botch of medical establishment, instigated and financially enforced by the govt.....
Posted by Svengali Eyes (Member # 6118) on :
Southampton Lyre - no offense taken. I agree with the points you've made.
Still it is my opinion that this is a personal problem for the doctor to rectify.
Posted by Greatcod (Member # 7002) on :
My sense is that a dignified Quaker-like vigil, as opposed to a theatrical noisy protest, might be effective, especially if some kids were there. The media side concerns me greatly.I think that it will be described as an atempt to revoke the license of an ailing, elderly physician who is prone to serious errors in judgement, and not much about Lyme at all. If the media doesn't get information about the Lyme aspect of the case, they will not go looking for it.
Posted by Nancy-FL (Member # 7986) on :
Is there anyone who reads this site who can act as a representative from one of the Lyme support groups and contact Dr. Joneses attorney asking if there is a place here for an organized, silent, respectable attendance at the hearing? If they could do that and then post the information here, it would surely do a lot to get something organized before the date is upon us and nothing has been done.
I might add that with so many Lyme patients being too sick to attend, those of us who are healthy enough to go need to go and stand for those who can't. The AIDS demonstrations were supported by the families of those too ill to speak for themselves, but unfortunately many families of Lyme patients think they are looney because of the massive variety of symptoms involved. I feel that we must step up and make a presence, but it must be done with dignity.
Good health to all, Nancy
Posted by shazdancer (Member # 1436) on :
Hi Svengali,
I respectfully disagree. I understand that an uncoordinated or nasty response can do more harm than good.
But a peaceful demonstration with media involvement can do a LOT of good, calling attention to the cause of some very sick children who are being overlooked by the medical community.
I can't think of anyone who would understand that more than Dr. Jones, who marched with Dr. Martin Luther King, Jr.
Regards, Shaz
Posted by pmerv (Member # 1504) on :
I sympathize with peoples' desire to be more actively involved with helping Dr. Jones. I will check with his attorneys about the idea for some sort of demonstration or whether people should plan on attending the hearing (the Jan. date may be changed).
In general, so far we have been very polite and restrained. What has it got us? Being a Californian, I recall the AIDS activism, the closing of Golden Gate Bridge and other incidents. I also remember Father Berrigan and others during the Vietnam War. I even marched at the Pentagon myself. From several experiences at NIH meetings, I know the govt. is very aware that this type of activism is a possibility and is to be prevented if possible. I understand why people are thinking about doing something more dramatic.
However, in respect to Dr. Jones, ideas that seem intuitive may not fit with the legal strategy, and in fact may be counterproductive. I will try to find out from the lawyers whether they think any action by patients is desirable, and will pass the information on to all the lists. Phyllis Mervine
Posted by lou (Member # 81) on :
Thanks very much.
Posted by chainsaw joseph (Member # 6611) on :
In the 4 years Ive been sick and reading lymenet Ive never understood how quiet we stay.For the most part we take a beating and just take it.In 4 years Ive seen one good turn out at the Mass state house,if we did that every month somewhere things would change.Until we do something we can complain all we want but we havent gotten far.We need to make ourselves seen and the scary facts about lyme known.I havent for the life of me figured out why we dont uprise and stop the craziness now.I know one year of big well organized protests could turn this thing around.If we get a crowd(well behaved and well informed)in the right places,one place a month and notify all the media we can end this.Time to attack instead of being attacked.We have been treated criminally,at least for the sake of children we need to organize,be seen in the streets and let the facts be known.Im not saying this for dr jones because i dont know how he wants to handle this but afterwards we need to go on the offence hard.
Posted by Nancy-FL (Member # 7986) on :
Posting to send this up. Thank you, Phyllis. Will be watching for information from you.
Nancy
Posted by shazdancer (Member # 1436) on :
Thanks, Phyllis. I am on a couple of lists, so I will wait to hear.
Regards, Shaz
Posted by elena (Member # 8549) on :
quote:Originally posted by chainsaw joseph: .If we get a crowd(well behaved and well informed)in the right places,one place a month and notify all the media we can end this.Time to attack instead of being attacked.
I agree with what you're saying. We did have a demonstration here in England outside Tony Blair's house in 2004. Then in the year that followed we had more media coverage of Lyme disease than we did in the FIVE years before it.
We've been on the defensive for far too long, in my opinion.
Elena C
Posted by tequeslady (Member # 6832) on :
I agree with "chainsaw".
We're (me included), are acting like victims. This whole lyme thing is "insert colorful word here"!!
What about brainstorming what we can collectively do to bring attention to this disease. Maybe pooling money and taking out several half or full page ads. I don't know.
I think the thing is we all feel like such crap, and get beat down by others, not to mention that it takes a lot of effort to treat this, that we, at least me, get apathetic at times.
What do you think we should do?
Posted by Mo (Member # 2863) on :
Thanks, Phyllis, for trying to get more info for us.
I agree with much that is being said here, and that a well-informed, organized, peaceful but PRESENT, in massive numbers protest in the name of the children could be very effective.
However, it would be contingent upon whether Doc J and his attorney thought it was at this time.
In general, I also agree with Joe.. we need more organized 'marching' overall. I believe we have come far enough with public education, and also the number of cases the general public has become aware of.. through local articles, or just that most people have 'heard' of someone becoming severely ill with these misunderstood, mistreated diseases..
I think that enough of the public is aware on some level that more organized protests in mass could, at this time, be the catalyst we need to turn the tide on the medical/political opression.
The public outrage will be immence if the word gets out in a targeted and organized fashion.
Mo
Posted by Ann-OH (Member # 2020) on :
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.
Sincerely, Sheila [end quote]
Posted by Mo (Member # 2863) on :
OK -- this one is circulating today.
I think we need some clarification.
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.