Topic: Making horrible even worse- CSTE amendments
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
CSTE = The initials stand for- Council of State and Territorial Epidemiologists
```````````````````````````````````````````````` I am very concerned for patients who need help now and those who will need it in the future. We just got slapped in the head again.. and kicked in the butt too.
You have the CT and NC Health Departments... and the Lyme Disease Foundation... to thank for drafting and/or supporting the negative changes in the surveillance criteria that the CSTE just passed.
As it stands now... this will make it harder for Lyme disease cases to be classified as "confirmed" reportable cases counted by the CDC.
It will also be potentially dangerous to patients if doctors use the NEW surveillance criteria for RMSF and Ehrlichiosis... as they have done in the past with the old criteria for years. (the coinfection amendments were proposed by North Carolina's Health Department- remember the one's involved in Dr. J's medical board hearings)
A positive reading on the standard tests for RMSF and Ehrlichiosis that many, if not all of us have used in the past to get a diagnosis and treatment, will no longer be considered to be counted as confirmed cases ... therefore.. the disease could be missed ... and patients may not be treated because of it... and could subsequently die.
More news to come...
For comparison purposes... and only ONE of many reasons this will be a negative change in a world where numbers count... and lives are hanging in the balance...
```````````````````````````````````````````````
Previous Surveillance definition for Lyme:
Laboratory criteria for diagnosis
* Isolation of Borrelia burgdorferi from a clinical specimen or
* Demonstration of diagnostic immunoglobulin M or immunoglobulin G antibodies to B. burgdorferi in serum or cerebrospinal fluid (CSF). A two-test approach using a sensitive enzyme immunoassay or immunofluorescence antibody followed by Western blot is recommended (7).
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
New 2007 adopted amendment for Lyme:
Laboratory evidence
For the purposes of surveillance, the definition of a qualified laboratory assay is
(1) a positive culture for B. burgdorferi,
(2) two-tier testing interpreted using established criteria [1], or single-tier IgG immunoblot seropositivity interpreted using established criteria [1-4].
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
MY NOTE- A positive IgM which required only 2 bands to be confirmed has been dropped from the list above..
Now patients must have a positive IgG test which requires 5 bands to have a reportable case.
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Say good bye to chronic Lyme patients. We are being written out of the definition by the IDSA and now the CSTE.. and with the LDF's support.
But insurance companies and medical boards who use the new criteria to decide our treatment will be delighted.
posted
pu !! boy, does this smell like hog's manure!
MY NOTE- A positive IgM which required only 2 bands to be confirmed has been dropped from the list above..
Now patients must have a positive IgG test which requires 5 bands to have a reportable case. *****************************************
IP: Logged |
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I think the CDC's only concern with surveillance is monitoring for a sudden outbreak, as would occur with bio-warfare.
I really don't think they have any concern for people who've been infected for any length of time. I believe Dx is supposed to be the physician's job and therein lies the problem... The doctors just don't get it!!!!
Maybe they should teach THAT at "all the major universities" . STUPID LEMMING DUCKS and IDiots!
(sorry, bad morning )
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
| IP: Logged |
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Is it me??
quote: a positive culture for B. burgdorferi
They don't usually culture it now because it is so slow-growing, do they? How long does that take?
quote:two-tier testing interpreted using established criteria
Isn't this what they are currently doing,IGM and all?
quote: or single-tier IgG immunoblot seropositivity interpreted using established criteria
This looks to me like they could just accept a five-band IgG positive blot w/o IgM (and no elisa) In lieu of the 2-tier.
Didn't they require BOTH IgG & IgM pos for reporting before?
OK, wait, I think I get it.... Once you're misdiagnosed or Dx is missed you end up only throwing an IgM or two, here & there, until you've actually been treated with ABX for a while and co-infections have been dealt with.
There should be seperate criteria for those with co-infections. I know Babesia takes down your immune system and makes it harder to fight the Lyme. I think there should be a curve, for those with Babesia, on immune-based tests.
I also think co-infection testing should be made a mandatory accompaniment to Lyme tests & reporting. There are still ducks out there who don't know to order them and, unless you've been through this, would you know to ask???
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
| IP: Logged |
It makes it look like they're updating the criteria in response to science, whereas actually there is no improvement at all.
Everyone I know with Lyme has been diagnosed late, after years of puzzling symptoms and visits to specialists, etc., and WE ALL had neg IgG but pos IgM (but not by CDC bands, all by several other bands specific for Bb). Only one had positive ELISA (Igenex IgM, but I don't know if a commercial ELISA would have been positive. That's me; but I am still counted as a negative because the "follow-up" Western isn't CDC pos, so the ELISA is considered a "false positive". Does Anyone Ever get diagnosed, using CDC 2-tier?).
And what's with the "culture" biz? No one even tries to do culture for diagnosis, and for good reason. That is just a smoke-screen to try to make it look like they care.
WHEN will this ridiculous situation end? I think I understand what's going on with Steere, et al - they're just bad scientists, who are arrogant and close-minded. Most doctors don't know how to judge science, they just believe what they're told by the reigning "expert". But why are the "public health" people so unresponsive? What's in it for them?
Well, sorry about that little rant. I try so hard to be calm and reasonable when discussing Lyme with friends and family - it's tiring.
May we all be well, Lorima
Posts: 74 | From MA | Registered: May 2007
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
HA!
Betty G...
Hog manure is right!
``````````````````````````````````````````
AliG..
You are right! Ducks aren't suppose to use this as a diagnostic tool or to decide treatment.. and the insurance industry isn't suppose to use it as a denial tool either.
But they do! Dirty rats!
Or as BettyG says.. HOG MANURE!
HA!
````````````````````````````````````````````
AliG again..
I THINK the cultures can take 6 weeks? I do know that even Hopkins reported in their blood study report from last year.. which had dip-stick on it as an author (the editor of the IDSA guidelines) that they don't recommend waiting for a culture.. and few come back positive anyway.
And I agree with your other comments too!
`````````````````````````````````````````````
Lorima..
You said.. "Does Anyone Ever get diagnosed, using CDC 2-tier?"
In the ILADS guidelines there is a quote that says... up to 90 percent are missed using the two-tiered testing method.
My wording may be off a touch on that quote... because it is from memory.. so not word for word. But the 90 percent figure is correct.
You said.."But why are the "public health" people so unresponsive? What's in it for them? "
I always wondered too. Till I had to deal with them up close and personal.
The big universities.. Hopkins for example.. get money.. taxpayers money.. for studies and projects... that the health department feels is necessary and approves.
Our health dept has something like a 7 BILLION dollar budget a year.. tax payers money.
As my daddy would say... It "behooves" (sp?) Hopkins to suck up to the health departments.
northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
OK, so Public Health Departs. have a vested interest.
They have money.
Why would they have an interest to see reporting numbers go down?
Are they tied in with CDC as funding source?
N/
Posts: 1331 | From hither and yonder | Registered: Sep 2005
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
And for you Cave my dear... a special place.
You said...
"Some of my questions:"
I say... ALL of your questions... as I am NOT tit for tatting here with anyone. Did I make myself clear? Crystal clear?
I'll explain what I know.. and it is up to others to add what they want. Deal?
You said..
"1. What would the LDFs reasons for proposing or supporting these amendments, if they're so damaging to the Lyme community as a whole? I find it hard to think that they (LDF) would support anything that IS damaging to "us", but I'm just a confused bystander."
I have absolutely NO clue why someone would support these amendments. I have examined everything I could that they and others have put out.. from both sides.. and I still have NO idea.
I have at least 70 pages of notes, comments, websites and articles that I have saved on this issue while I was researching. I've done it up, down and all around... and still can't see a good side to this amendment.
If you want more answers as to why anyone else is doing what they are doing... they will have to respond. So far I haven't seen one piece of documentation supporting their claims... and all I can find is reasons NOT to support it.
And I have.. to be fair.. looked as hard as I could to see all sides of the issue.
They've got ME stumped!
``````````````````````````````````````````````
You said...
"2. Can someone give plain-talk answers to the reason the LDF is shooting the patients in the back, so to speak?"
If they are.. I have no clue as to why. They would need to address your comments with facts I guess?
```````````````````````````````````````````````
You said..
"3. Is it being suggested that the LDF gets some kick-back of any variety for doing this (IF they are)."
I have no clue IF they are.. or why they would be.. or who it would come from IF they were. I am certainly not suggesting anything close to that... or supporting that theory at all.
``````````````````````````````````````````````
You said..
"4. Is it all just a matter of all factions not communicating well, not understanding, confused, set in their ways?"
Sorry.. WHO are you talking about? The CSTE or someone else?
Actually... Nevermind. I wouldn't know the answers and couldn't speak for any of them anyhow. They.. who ever you are addressing.. would need to reply and speak for themselves.
````````````````````````````````````````````````
You said..
"5. Something doesn't make sense------ but as I said, I don't really understand the whys and wherefores. Anyone else as confused (and as in-the-dark) as I am?"
I don't think so. You seem to be the only one continually asking questions and not understanding what is being posted.. even when it is explained over and over... and in detail. So let me ask you this...
Have you eaten your puppy chow today?
``````````````````````````````````````````````
You said.. "Please don't shoot the messenger, again!"
Ok.. I will resist THIS time.. but do note... the gun IS sitting here loaded.
posted
Well, if they don't have to count EM's any more as a case of Lyme disease they will get to report fewer cases, which is their goal, not??
Remember the Healthy People 2010 objectives for Lyme???
14-8. Reduce Lyme disease.
Target: 9.7 new cases per 100,000 population in endemic States.
Baseline: 17.4 new cases of Lyme disease per 100,000 population were reported in 1992-96.
Target setting method: 44 percent improvement. (Better than the best will be used when data are available.)
Data source: National Notifiable Disease Surveillance System (NNDSS), CDC, EPO.
Total Population, 1992-96 New Cases of Lyme Disease
Rate per 100,000
TOTAL 17.4
Race and ethnicity
American Indian or Alaska Native DSU
Asian or Pacific Islander DSU
Asian DNC
Native Hawaiian and other Pacific Islander DSU
Black or African American DSU
White DSU
Hispanic or Latino DSU
Not Hispanic or Latino DSU
Black or African American DSU
White DSU
Gender
Female 17.2*
Male 19.2*
Family income level
Poor DNC
Near poor DNC
Middle/high income DNC
DNA = Data have not been analyzed. DNC = Data are not collected. DSU = Data are statistically unreliable. *Note: Data do not include Pennsylvania.
In 1991, a standardized case definition for Lyme disease was adopted by the Council of State and Territorial Epidemiologists. Since then, the number of reported cases of Lyme disease has increased from 8,257 in 1993 to 16,455 in 1996 because of increased surveillance as well as a true increase in new cases. From 1992 through 1996, 92 percent of cases were reported from 10 endemic States. New initiatives to prevent Lyme disease include the implementation of community-based prevention programs, host-targeted acaricides to reduce the numbers of vector ticks, and appropriate use of Lyme disease vaccine.
*** So what happens to the funding of the health department if they don't meet these objectives?
Posts: 339 | From nowhere | Registered: May 2007
| IP: Logged |
bettyg
Unregistered
posted
CSTE = Council of State and Territorial Epidemiologists
tincup, would you place this on your 1st post here so we know what the abbrevation stands for? i've had NO idea whatsoever and know others too are as blank as me! thanks my friend!
IP: Logged |
trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
****"5. Something doesn't make sense------ but as I said, I don't really understand the whys and wherefores. Anyone else as confused (and as in-the-dark) as I am?"****
**I don't think so. You seem to be the only one continually asking questions and not understanding what is being posted.. even when it is explained over and over... and in detail.**
I am, Cave, but I've stopped asking questions because I was told, in essence, to not worry my pretty little head over it.
So, other then this post, I'm out.
It seems to me we're seeing and hearing part of the story. I am in no way saying what we're reading isn't for the most part accurate but it seems slanted. That doesn't mean the slant is wrong, btw, it may be exactly right for all intents and purposes.
I'm guessing the other side won't or can't post because this is an LDA site. Why should they bother and would their posts stay?
TC ~ Please know I am not questioning what you've written or your explanation. You know I love you even if you aren't so fond of me right now.
I am curiuos to what the heck the others is thinking. Obviously their veiw point is just the opposite and I'd love to know why.
Are they thinking a broader definition of probably or possible cases would be benificial?
I don't see any way to gain anything from any of this. It appears to be more business as usual. With the patients getting ****ed up the *** . (not my first choice of treatment option)
Case definitions will change nothing. It doesn't matter we'll all be dead soon anyway.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
| IP: Logged |
northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
Aaaaah Pineapple !!!!!!
I see I see !
Darn, I always thought the Public Health Dept. was to protect the health of the public.........but I gather they just want to play with numbers, rather than the real deal.
and so, another icon has bit the dust.
Thank you....
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
| IP: Logged |
northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
Hi Ms.Cave,
oooh, just a teensy weensy bit of sarcasm.....sad to see the answer so clear, though.
I, too, recently read something about the WNV vs Lyme funding. I think it was pmerv speaking at the anti-CSTE (whatever those letters are) rally. Maybe in a newspaper article someone posted? For accuracy, try a search!
But if you trust a lyme brain, yes, I remember the dollar funding number was several times higher than lyme despite a lower incidence.
Sorry about your recent brain event.....probably messier than me trying to do one of those reverse latte's.
Me? I live only in the Now (Ekhardt Towle...sp?)
.......convenient condition/excuse for one with tick borne brain inflammation! I pretend to be calm, when I really just cant remember, and sometimes dont really care to try!
Northstar
hmm. I read where there is no treatment for WNV? Sounds like lyme and tick borne diseases.
Posts: 1331 | From hither and yonder | Registered: Sep 2005
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey pinapple...
Excellent report! YES! That is one BIG reason they don't want high numbers. Here ii this state, the targeted goal the Health Department set for themselves is totally shot. And it was sooooo pitiful to start with that it is embarrasing!
Rather than having 15 percent less cases of Lyme... there is an 85 percent INCREASE!
In other words... they (health dept) got money to reduce cases... LOTS of money... and they BLEW it! We are biting at their heels and watching them.. and they know it... and they KNOW we will scream and shout more.
They MUST reduce numbers if they hope to "look good" on judgement day.
At the end of the 10 years (2010).. when MORE money is requested so they can keep their jobs..... the numbers MUST look better than they do now.
Or FIRE away...
And should we mention that the LESS reported cases coming in.. the more "free time" they will have. Why get paid big bucks.. and be expected top actually WORK for it.. if they don't have to?
``````````````````````````````````````````````
BettyG... done... and thanks for the suggestion!
```````````````````````````````````````````````
Joe Hambone... you said..
"***Have you eaten your puppy chow today?***
What's the reason for that?"
Maybe you haven't seen the cute commercials with the pet owner coming home and opening the door and the little puppy running to greet him and he runs clear over top of him and out the door?
Or the one where the puppy does amazing things like climb a tree... sommer saults on a trampoline... open the fridge to get a beer for its owner.. etc? And after watching the cute puppy full of energy and running nicely and seeing the puppy go go go... and doing BIG things...
The commercial announcer says..
Have you had your puppy chow today?
I THINK the commercial is for Purina Puppy Chow? Anyhow.. cute puppies and funny commercials.
Cave said...
"Anyone else as confused (and as in-the-dark) as I am?"
I REPLIED to her.. again... after going over this topic multiple times and posting in as much detail as humanly possible..... and it being hashed out in other places... and her seeing LOTS of other posts at other sites to be able to gain even MORE insight others here don't have-
"I don't think so. You seem to be the only one continually asking questions and not understanding what is being posted.. even when it is explained over and over... and in detail. So let me ask you this...
Have you eaten your puppy chow today?"
MEANING...
Does she need some extra brain power and energy today? Might some puppy chow help her... like it helped the puppies?
It was a joke!
And NO.. I also don't have a loaded gun sitting here to shoot the messenger ... in case you are wondering.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
True..
You said...
"It seems to me we're seeing and hearing part of the story."
You are.
The rest of the stuff.. the work of those people who continue to attack our LLMD's, activists and patients... and everything they attempt to do to HELP everyone... rather than DOING anything pro-active themselves... is being hidden from all of us from what I can tell.
We only find out by accident after harm has been done. NO. It doesn't make any sense. And.. it keeps happening. Some people are working themselves to death trying to help the community (and are consulting with people in power and who have the most experience).
Others are simply laying behind rocks and waiting to pounce on whatever efforts are being made in OUR behalf.
The destructive efforts behind the scenes are trying to disrupt others efforts.. and rather than helping.. it put's more people's lives in jeopardy.
I have NO clue why this is happening. If it were the PROPER thing to do ... my thought is it would be done in the light of day.. and with at least discussion with others first.
I am jumping on wagons AFTER reviewing as much info I can to be sure it is the RIGHT wagon... and working myself to exhaustion to make things happen.. and I am being stoned for my efforts.
Many of the LLMD's are being stoned for helping the community.. as well as many other people across the country who volunteer their time, money and what little energy they have to help people they don't even know.
And I HONESTLY don't know why this is happening. It is childish and stupid at best.. and life threatening at worst.
True said..
"I am in no way saying what we're reading isn't for the most part accurate but it seems slanted."
If I had a clue what others who are hiding and throwing stones had in mind.. I would tell you. I can ONLY present MY views.. and the views of LLMD's, activists and patients who are working TOGETHER to help YOU. If that is slanted.. find the ones who are hiding and demand answers from THEM.
You said.. "I'm guessing the other side won't or can't post because this is an LDA site. Why should they bother and would their posts stay?"
Actually.. this is NOT an LDA site. It is open to the public... and anyone can post if they register. The LDA does send a donation each year to LymeNet to try to keep it going for US.. but they have NO control over it.
Just like I send in money to the National Wildlife Federation when I can.. but I have no say in their business.
If folks anywhere WANTED you to know anything about what they are doing.. they can certainly post. ONLY when the posts break the rules.. rules that ALL of us must follow.. do they get booted.
True said...
"Case definitions will change nothing. It doesn't matter we'll all be dead soon anyway."
VERY interesting point of view. Can't say I agree.. but I do respect your right to say it. I also want to say I am glad not everyone has that attitude... or we would all just be better off laying down and dying.
My thought is.. the work I am doing may not help me personally.. and actually I don't NEED to do ANY of this for me... as I am ok and set to go without any of this stuff.
I'm already damaged goods.. I get what I need to keep me alive... like I have been doing for years.. and I could walk away tomorrow with NO negative effect on my personal situation. I REALLY don't need any of this... not at all!
But MAYBE.. just MAYBE.. if I keep pushing as hard as I can... and don't walk away... and help others with their efforts to make positive changes.. and chip away here and there at the cement block wall that is killing people...
MAYBE we can save a child that WILL be bitten in the future from suffering. MAYBE we can save a family.. or an individual who REALLY wants a life and not an existance in the devils land.
But you DO have me thinking. I could be fishing.
And today... I am as close as I've ever been to pitching it all and going... and NOT looking back.
northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
Of course, I have a simple mind, so it would seem more simple, accurate, and beneficial, to educate doctors to make more accurate diagnosis. That is, to educate that the IDSA uses epidemiological criteria for diagnosis.
But that probably contradicts CDC and the Ins. Co./IDSA standards, and so would threaten funding.
N/
Posts: 1331 | From hither and yonder | Registered: Sep 2005
| IP: Logged |
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Cave said..
"Well, respectfully, some people who WOULD like to post in the thread that you started for discussion have been banned from Lymenet."
Well... duh... you KNOW them then!
At least you know them by name and well enough to know they've been banned! That solves a lot of problems.
1. Please do ask them to email you answers to your questions so you will have that transparency you desire.
2. And, respectfully.... if they have caused THAT much trouble here before .. especially enough damage to be totally banned from this site... would that not possibly speak to their motives and credibility?
Did they attack Lyme patients here? Or our LLMD's? What ever it was it must have been pretty serious to not just have been warned multiple times for offending or attacking or whatever it was.. but to be completely banned?
Getting banned from a Lyme disease website that is designed to HELP people with Lyme disease MIGHT give folks the impression that something is seriously wrong with this picture.
3. And are they.. (the ones who have been banned)... the ONLY ones supporting the amendment? Certainly ALL of them couldn't have been banned.. or could they have been?
4. There must be some website where they haven't been banned from ... where they could chat and talk about their opinions and share their facts to those who want to hear it? Oh oh!!! Got it! The Sci-Fi station!
You'd have to be the devil himself to be banned from there!!! And then.. actually now that I think about it... the devil probably wouldn't even be banned from there!
I KNOW that isn't a "premier" site for decent people to visit for very long.. but folks could go there long enough to read a few posts and ask questions.
And really... I don't think being banned from ONE site is the reason their opinions are not being shared. Cyberspace is a big place. And as far as I know.. Ma Bell .. the old fashioned way to communicate.. still works for me!
5. And Cave... maybe you can do what you've done with me? You can ask them if you can copy their post/email to another site and share it with others like you did mine here? I gave permission... no problem. Maybe if you want to pursue this.. they will allow it too?
Worth a try!
```````````````````````````````````````````````
Cave said.. "Perhaps you didn't know that. I'll assume you didn't."
No, I didn't know they had been banned because I don't know who they are! You obviously know more than I do!!!
I also don't know who has/hasn't been banned from here unless I see someone's post where it is mentioned. Unfortunately I haven't been on much lately.
Glad this is finally settled and you can get some answers!
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Cave said..
"I've never been for nor against the amendment. I've read it AND all the verbal hand jive that goes with it (from both sides) and I still haven't made up my mind.... The amendment will pass or not on it's own merits, hopefully."
Well, I gotta laugh.
While you are trying to make up your mind..
It passed already... last week!
Too bad you weren't able to help us kick it. I would have thought that perhaps the letter from YOUR doctor that was posted in several places... telling reasons why it was bad... would have been a good reason to act?
When not sure of the complicated details.. it might be good to support those who are working hard to make a difference for you... and those who you trust... and who have helped you. Like your doctor.
That is MY policy anyhow... but this time I was able to figure it out for myself.
trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Thank you for answering my questions, TC.
I was not and am not meaning to sound ungrateful or unappreciative of all that you do and have done. Just the opposite, in fact.
I do appreciate it every day. Please don't misunderstand that.
I am not someone undermining your, or anyone else's good works, and I hope my questions didn't make it appear so.
My last statement was an expression of my frustration. I agree it's most important to save others from living in this hell. I'm doing the best I can given the situation.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
| IP: Logged |
posted
". There must be some website where they haven't been banned from ... where they could chat and talk about their opinions and share their facts to those who want to hear it? Oh oh!!! Got it! The Sci-Fi station! "
Hi Tincup, What's the Sci-Fi station? sounds like a good place to go when I need to get riled up for action! Of course I can always just read a few mainstream-press Lyme reports.
;-), Lorima
Posts: 74 | From MA | Registered: May 2007
| IP: Logged |
pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
you can experience the enlightening conversation of at least some of the banned at sci.med.diseases.lyme They often post items they have copied from here and make derisive comments. Also they routinely call Lymenet, "Lymenut." Browse at your own risk.
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
| IP: Logged |
pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
About arguing: I think it's great, actually, to argue pros and cons. However it's also time-consuming, especially if you are suggesting we do it in public.
Those of us who signed onto the protest letter to CSTE have trusting relationships with other people who signed onto the protest letter. We have collaborated on other projects and know and respect each others' work.
Once the protest was conceived, you can understand how it took off among this group of colleagues. We passed the letter around and suggested improvements and alterations. We signed onto the final version even if all our suggestions were not adopted. It was a committee effort.
Then other people who also are known to be allies were invited to "sign on." Since nothing is ever perfect, and there were time limitations, there was no point in inviting the world to comment, or no letter would have been sent.
It would be impossible to do this kind of thing on this forum, where some people are not even using their real names! People who complain anonymously about transparency are not likely to be taken seriously.
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
| IP: Logged |
pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
The new case definition is a simple way for the CDC to bring the numbers down, given the increase in awareness and diagnoses. It will be interesting to see whether this ploy will be successful or whether we can keep ahead of them.
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
| IP: Logged |
posted
Thanks Phyllis, Maybe I'll skip the "sci-fi channel", now that I think about it, I'm riled up enough already. ;-), Lorima
Posts: 74 | From MA | Registered: May 2007
| IP: Logged |
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Thank you Cavey!**!))!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
| IP: Logged |
pmerv
Frequent Contributor (1K+ posts)
Member # 1504
posted
The change was proposed in an amendment by CT epidemiologist Cartter who complained that state resources were being consumed by the need constantly to investigate and verify reported cases, making sure they met the surveillance case definition. Especially in highly endemic states, this was proving costly in time and effort. The CDC after all professes not to care about the absolute numbers; all they care about is trends, outbreaks, and the like.
Now if they can just put a case into the Suspected category, they don't have to do all that time-consuming followup.
I don't think the LDF's position matters materially one way or another, except the CDC can say they had patient support. The writing was on the wall; the CDC was always going to adopt something more restrictive; and now they are. I haven't even seen the final language CSTE adopted, which I understand is worse than the language we protested.
-------------------- Phyllis Mervine LymeDisease.org Posts: 1808 | From Ukiah, California, USA | Registered: Aug 2001
| 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!
![[Roll Eyes]](rolleyes.gif)
![[shake]](graemlins/shake.gif)
![[cussing]](graemlins/cussing.gif)
![[rant]](graemlins/rant.gif)
STUPID LEMMING DUCKS and IDiots! 
![[Big Grin]](biggrin.gif)
![[lol]](graemlins/lol.gif)
![[group hug]](graemlins/grouphug.gif)
![[kiss]](graemlins/kissing.gif)
![[Wink]](wink.gif)
Printer-friendly view of this topic