posted
since i can't read timesnewroman, i'm copying that part of the letter here to read for myself and other neuro folks' benefit....betty
breaking up as necessary for us as well...
The Association of American Physicians and Surgeons (AAPS), a non-profit organization founded in 1943, is dedicated to fostering private medicine, ethical medicine, and the patient-physician relationship and protecting them from third-party encroachment.
Through thousands of member physicians and surgeons, AAPS represents virtually all medical specialties nationwide, primarily in small and solo practices.
AAPS is funded almost entirely by physicians, reflecting its representation of its members and their patients, in contrast with many other medical organizations that rely on funding from outside sources.
Justices of the United States Supreme Court have cited legal submissions by AAPS in multiple cases, most recently in 2008.
AAPS objects to the overly rigid IDSA Lyme Guidelines (``Guidelines'') that were published in 2006.
For example, on page 1090, the Guidelines mandate laboratory confirmation of an observed condition (extracutaneous Lyme disease) in order to diagnose and treat it.
On pages 1089-90, the Guidelines prohibit clinical diagnosis and treatment of particular conditions associated with Lyme Disease if based on ``clinical findings alone.''
These Guidelines should be revised to recognize that the physician must retain full flexibility in the diagnosis and treatment of Lyme disease.
Medical societies do not practice medicine; physicians do.
The mandate for specific laboratory confirmation is particularly objectionable, as testing for Lyme disease is notoriously insensitive and unreliable.
Patients who do not meet this criterion would often be denied treatment that could mitigate severe chronic disability. In some cases, long-term treatment is required.
Physicians must be able to exercise their professional judgment concerning the best treatment for each individual patient, without restraint by one-size-fits-all Guidelines, which amount to mandates and prohibitions.
The sine qua non of good medical practice is individualized care for individual patients.
Guidelines should not usurp this in any way.
It is each physician, and often only the physician, who knows the patient's history, course of illness, severity of presentation, and responsiveness to treatment.
AAPS objects to any curtailment of individualized treatment of patients by competent physicians, and no Guidelines should be adopted that infringe on such treatment.
Andrew Schlafly
General Counsel, Association of American Physicians & Surgeons, Inc. (AAPS)
Contact address for AAPS: 1601 N. Tucson Blvd., Suite 9, Tucson, AZ 85716-3450
Full text of objectionable provisions cited above:
****************************
tincup, thanks for posting this; i wouldn't have seen this otherwise.
i love the part of LET TREATING DR. DECIDE what is best for patient...
without one size fits all!! good letter and thanks to AAPS.
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Tincup
Honored Contributor (10K+ posts)
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posted
Be sure to see the introduction...
The Association of American Physicians and Surgeons (AAPS), which represents physicians and surgeons in small practices, sets the IDSA Lyme disease guidelines in its cross-hairs.
Why?
Because the physicians need flexibility and the IDSA guidelines are mandates that restrict the ability of physicians to provide individualized care.
The full text of the AAPS letter to the IDSA follows:
````````````````````````````````````````````````
Yes... my bet is the ducks are scrambling their eggs about now.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Glad you are smiling! Me too!!!
And don't miss what OUR own LLMD's have done.... amazing work!
Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
Thank you, Tincup, once again for keeping us informed.
It is wonderful that this group has taken the "right road" and challenged the IDSA.
I still have concerns, though, that so many mainstream doctors aren't educated enough to make a clinical diagnosis. One step at a time, I guess.
But I don't want to take away from the significance of this letter and the AAPS's public stand on the issue. BRAVO!
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
It's just common sense. The fact that people haven't been doing that only serves to underscore the greed and propaganda of the last 8 years.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
At last they have stepped up to the plate. How could doctors that take their responsibility seriously NOT attack the rediculous IDSA guidelines? The IDSA has harmed so many, and other doctors must know this.
Great news, thanks for posting.
[ 04-25-2009, 08:24 AM: Message edited by: Vermont_Lymie ]
Posts: 2557 | From home | Registered: Aug 2006
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Kudos to those who continuously go to bat for us.
Thank God for people who actually "treat" the patient
And not the big pharma and self promoting interests.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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livinlyme
Frequent Contributor (1K+ posts)
Member # 3773
posted
Well. I clicked on the link and it is a pure black page I happened to select all and copy and paste it but any other joe who goes to that page will not even think to see what lies under that blackness.. is it my computer GEEZ I sure hope not.. i can see it if i turn the laptop a certain way.. but very hard to see... I have no trouble with other web sites.. what is the point of having a web page if it is black on black or blackish?
I know someone was good enough to copy and paste for the Lyme Board here but what about other people who go to that website.. it is horrible how they have the contract for font against a terribly busy grey back ground that does not make it easy to read .. like black on white...
can someone contact them and let them know it would be nice to have it black font on white background to make it more user friendly? I did not find a "contact us" link to do it myself or I certainly would have.. thanks for the link though.. Linda D
-------------------- "Hatred paralyzes life; love releases it. Hatred confuses life; love harmonizes it. Hatred darkens life; love illuminates it." Posts: 1389 | From who knows, who cares, but somewhere over the rainbow | Registered: Mar 2003
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posted
Wonderful! I guess we can call or write to them at: 1601 N. Tucson Blvd. Suite 9 Tucson, AZ 85716-3450 Phone: (800) 635-1196 I was trying to find an e-mail but had no luck. I would like to write to Andrew Schlafly directly, does anyone have an email or anything?
Also, "Justices of the United States Supreme Court have cited legal submissions by AAPS in multiple cases, most recently in 2008."
Is it just me, or does it seem like little by little people are starting to speak out? Maybe we are witnessing the very beginnings of a turning tide. Maybe.
Posts: 845 | From Eastern USA | Registered: Jul 2006
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
THIS and the other submission from ILADS made my YEAR! THANK YOU Tincup for posting this!
And greatest thanks of all to those ordinary dedicated individuals and courageous professionals for putting it on the line and standing up for the truth!
quote:Originally posted by livinlyme: Well. I clicked on the link and it is a pure black page
It sounds like the blog CSS code may not be optimized or even viewable for all browser types and versions/operating system combinations. I have seen another person complain about the same thing with that blog site.
What browser type, browser version, and OS you are using? Maybe if you let them know they can check it out. You might have to use a different browser to read the site, or update to a newer version, if what you are currently using does not support their version of CSS.
I can't find any contact info for the blog owner. Maybe it is on the CALDA main site? I get lost on the site (Neuro-Lyme), trying to find contacts.
posted
Thanks for that. Great news.
Posts: 410 | From Victoria BC, Canada | Registered: Jul 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
"can someone contact them and let them know it would be nice to have it black font on white background to make it more user friendly?"
Hey hey Lakes....
??
I agree it is difficult due to the "font" but when I am looking at it... there is a "side panel" of black on each side... and a white page with black typing.
Is that what you see?
I am happy to make suggestions... but yeah right.. you want me to tell someone to change it to something I already see?
They already KNOW I am nuts... I just hate having to add to that image.
Actually, work with me and tell me if that is what YOU see... what I described... so I can tell them what is happening.
cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769
posted
TC this is such great news. thanks for keeping us informed...and keeping our chin up Posts: 1173 | From USA | Registered: Nov 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
The thanks go to Lorraine Johnson... who not only does so much all the time (you'll never know all the good stuff)... but she also keeps us informed too. She is trying.
Three thumbs up for that!
Often folks are so busy "doing" the things behind the scenes it is extremely difficult to make time to write up all the stuff going on.
I know these announcements are squeezed in between the other "work" but I sure appreciate seeing them when they come out ... and thank anyone who tries so hard to keep us informed.
But thanks cotton and everyone. It is nice when the messenger isn't shot.
That often happens!
And I have the bullet holes to prove it.
HA!
I like these short and to the point blog things. Hot off the press too. And well written if I may say so.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey there nenet...
I just made a contact about the concerns.
Phyllis is off for a few days... and I doubt Lorraine does the tech stuff... but I sent these posts to her about the viewing concerns...
And I know she will pass it along to CALDA volunteers to see what can be done. No promises.. but I would like a site to be happy for us too. Maybe they can make accommodations?
If you have a message.. slap in on here... or email me privately if you prefer.
I don't have permission (haven't asked actually) to share their personal email addresses on the board... so I would rather check on that before I would post them.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Tincup,
Sure - and thank you!
I wasn't asking for me, but for those that are having problems viewing. I can see it all just fine.
I'm sure your note will be fine - there is also the possibility that those having trouble viewing will just have to switch browsers or update the browsers they are using. Some blog and CSS code may not be compatible with all versions of browsers.
nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
quote:Originally posted by Tracy9: Do you think these two amazing submissions will really, truly make a difference? Or is the IDSA unstoppable?
I think they are going to have an impact, regardless of what the IDSA may get away with in this particular battle. I believe with this kind of onslaught of truth, that we will be winning the WAR.
I think IDSA is about to have some very very rough times, and will sustain far more than a slap on the wrist, with all of the news coming out about conflicts of interest and corruption in Guidelines-making groups, not just within IDSA, but in many areas of medicine.
I believe this massive collection of submissions from reputable and credible sources is a great boon for us all, and are the much needed catalyst for our cause!
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey nomo...
You said.. "Is it just me, or does it seem like little by little people are starting to speak out? Maybe we are witnessing the very beginnings of a turning tide."
It is a long hard road... but yes... we are moving forward.
posted
I guess I misunderstood that part sorry for the confusion. I thought it meant they have taken cases all the way to the Supreme court. Must have been me dreaming again...Picturing the jerks on the IDSA at trial before the Supreme Court. Aww Dare to dream!
-------------------- If you keep doing nothing...nothing changes!
posted
Yes this is spectacular news. In one fell swoop, IDSA has been repudiated by thousands of physicians. This comes on the heels of the 7,000-member Conn. Medical Society's support of the Conn. Lyme Bill in the testimony presented by Dr. William Handelman, CMS President.
IDSA has suffered three very public humilations thus far, the first being Blumenthal's unprecedented actions. Can they take any more? It is certainly making them cranky, making them appear contemptuous of suffering patients.
Perhaps they will do the honorable thing and fall on their swords. More likely, however, the IDSA Worms will slither back into their worm-holes, back to the darkness they so covet.
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Beautifully said, paulieinct! The public repudiation of the IDSA's superstitious and non-scientific belief system is just beginning...
thanks to everyone who is making this happen, not least is that fantastic book by Pam Weintraub!
Posts: 2557 | From home | Registered: Aug 2006
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-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
Is there not a group of Lawyers that can make a class action suit against the IDSA?
There seems to be ample evidence that their guidelines were based on deliberately incomplete information.
They also had obvious conflicts of interest, and their fully biased information has resulted in the deaths and suffering of thousands, if not tens of thousands of patients.
Since the guidelines were for all practical purposes used to help the insurance industry and the ties and methodology can be documented, it is a provable case.
The guidelines were a deliberate fraud, which have resulted in harm to Lyme patients, my wife included.
This needs to happen to send a message to any other "bought and paid for" medical group from trying this method of denying care for the financial benefit of special interest groups.
Dan
Posts: 2919 | From Minnesota | Registered: Aug 2006
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I would say that there has got to be an attorney who would jump on this as a class-action lawsuit. Of course, if the IDSA guidelines are revised as a result of the guidelines review, that would make it a slam dunk. Because any revision of the guidelines would be based on information that was already available to the IDSA worms when they wrote them in 2006.
Perhaps Lorraine Johnson (?) would know. I think she is an attorney for one of the Lyme groups?
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Dan, This is something some of us have been talking about for awhile. You're going to see a massive surge soon, politically, legally, and medically. Patients are advancing on the enemy, and the science is rising to the top like the cream of the crop. It's going to be a nightmare for the IDSA.
People need to be taking news articles like this to their doctors. They need to be giving their physicians copies of Under Our Skin. They need to be giving their physicians documents on the outcome of AG Blumenthals investigation conclusions.
Patients need to produce copies of these documents and share them as much as possible in order that people understand the conflict and the science.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
That's my "dream come true". A class action lawsuit against IDSA and insurance companies. I hope I can see it in my lifetime.
Posts: 847 | From upstateNY | Registered: Dec 2007
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
quote: You're going to see a massive surge soon, politically, legally, and medically. Patients are advancing on the enemy, and the science is rising to the top like the cream of the crop. It's going to be a nightmare for the IDSA.
I think you are right. I want a front row seat when that happens!
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
And it must be true because the New York Times said so.
Here is the article Amanda is referring to with the rest of the story.
posted
paulie, refresh my neuro memory ... who is Phyllis Schlafley ??
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
quote:Originally posted by bettyg: paulie, refresh my neuro memory ... who is Phyllis Schlafley ??
I was just going to ask the same thing.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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posted
I think I will send this to Erin Brockovich. I have wriiten too her twice now. Maybe I will write to her each week until I get a response.
Thanks for that address Betty! I will add it to my to do list. I also want to write to all the Doctors and positive contributors in "Under my Skin," thanking them.
Yes Metallic we do need to be printing things like this and giving them to our doctors. I will be giving a copy of UOS to the doctor who diagnosed me, my pcp and the neurologist I recently saw. I hope others do the same and I have also talked to the local high school and they are going to show it in May in the health classes.
-------------------- If you keep doing nothing...nothing changes!
I deleted my post. I didn't mean to stir up controversy. I apologize if anyone was offended. -Paulie
-------------------- Sick since at least age 6, now 67. Decades of misdiagnosis. Numerous arthritic, neuro, psych, vision, cardiac symptoms. Been treating for 7 years, incl 8 mos on IV. Bart was missed so now treating that. Posts: 765 | From nw ct | Registered: Sep 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Paulie...
I was not at all offended (probably too dumb to be offended IF that was the intent and I don't think it was- not at all).. just really curious as to what you knew or saw that I was missing totally.
In the light of also not wanting to raise a ruckus... I deleted my post as well.
Thank you for your consideration in that matter.
But I am still curious. If you care to share, please do.
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