Anybody knows more about this questionable organisation? Are they secret extension of IDSA?
Who does support them financialy? For sure not us, patients.
Any thoughts or info?
Posted by Lymetoo (Member # 743) on :
Secret extension would be believable for me!
Posted by Michelle M (Member # 7200) on :
Shill organization for the IDSA.
Check out their advisory board or panel.
Sickening.
Michelle
Posted by CaliforniaLyme (Member # 7136) on :
The ALDF was known amongst us Lymies as the ANTI-LDF when they began*!(*)!*)! It was led by David Weld who just died and some of us were hoping the org would fold but it appears to have transitioned his death... Too bad!!!!!!!!!!!!!!!
Posted by Areneli (Member # 6740) on :
Who is paying for their harmful activity?
Posted by ldfighter (Member # 9405) on :
Good question. I'd like to know more about their corporate sponsorship. Apparently they've gotten some funding directly from the CDC.
This is US Rep. Carolyn Maloney (D-NY) in 2001, addressing Congress: "Recently, the ALDF, in collaboration with the Dutchess County Department of Health and the Institute of Ecosystem Studies in Millbrook, NY, received a grant of $300,000 for the first of a three year grant period from the Centers for Disease Control and Prevention to institute a community-based integrated management plan to significantly reduce reported cases of Lyme disease and other tick-borne infections within a target community."
And this link shows that they received over $45,000 in government grants in 2004. http://tinyurl.com/3xafcx
[ 09. February 2007, 01:08 PM: Message edited by: ldfighter ]
Posted by TerryK (Member # 8552) on :
ldfighter, the tinyurl link doesn't work to bring up the page.
Interesting choice of words Not to reduce lyme disease but to "... significantly reduce reported cases of Lyme disease"
That's certainly been the goal of the IDSA all along. To keep the *reported* cases of lyme disease down. I'm sure that's not how they meant for this to come across but it rings true to me. Terry
Posted by northstar (Member # 7911) on :
Interesting choice of words Not to reduce lyme disease but to "... significantly reduce reported cases of Lyme disease"
Terry, that comment screamed to me, too.
Snake tongues.
Interesting, but was this about the same time that Conn. stopped or reduced reporting? (well, it was one of those states).
Northstar
Posted by lou (Member # 81) on :
This organization was set up to confuse the public. As a direct counter to the previously established Lyme Disease Foundation, whose founders were parents of a child who died from lyme.
It is Steere and his buddies, basically. The corporate people involved may not even know the anti-lyme focus of the group. I think they are just trying to do their charitable work, and were approached by people with high sounding credentials. That is my take anyway.
I think this group was also behind the production of two publications that used the titles of already published books that were helpful with lyme info, like Denise Lang's book and Karen Forschner's. Exact same titles, you can find them on amazon. This is possible because titles can't be copyrighted. How sleezy is this?
Posted by ldfighter (Member # 9405) on :
sorry about the bad link, you can get the pdfs here (Congressional Record statement from Rep. Carolyn Maloney - ALDF receiving $300,000 from CDC)
I flirt with the idea of "stealing" their corporate sponsors by explaining them the situation.
The money could be used for good purpose.
Can we somehow get their list of corporate sponsors?
Posted by lou (Member # 81) on :
I had the list of corporate people associated, don't think it would be accurate to call them sponsors. List has probably changed from a couple of years back. Do you think the average corporate exec has better than average ethics and could be appealed to? Have my doubts. One of their meetings at a fancy NYC hotel was picketed several years ago. Didn't seem to have discouraged these corporate people.
Posted by csperanza (Member # 9613) on :
forgive my ignorance, but what i've never understood is why the giant pharmaceutical companies would lobby on the side of treating lyme patients more aggressively since it would mean selling more abx. what am i missing?
Posted by Areneli (Member # 6740) on :
csperanza,
I am sure that they wouldn't mind selling more antibiotics. Who wouldn't? However they are not united. Pretty much each abx is produced by a different company/competitor. If one starts promoting long term treatment for Lyme Disease the whole promotion will benefit also their top class competitors and generic drugs manufacturers while competitors and the manufacturers wouldn't suffer any cost of the promotion.
This is a very good reason of not doing it at all.
Also big pharmaceutical companies like medical tests. You treat somebody who is positive in test and after a treatment they are negative and healthy. In LD they cannot use tests in this clean way so the whole long treatment may look questionable in a public eye. They don't want to be accused of being unscientifical as they reputation and sales might suffer.
Anybody has other views?
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by csperanza: forgive my ignorance, but what i've never understood is why the giant pharmaceutical companies would lobby on the side of treating lyme patients more aggressively since it would mean selling more abx. what am i missing?
They may also consider that if the person is chronically ill they will consume MANY more pharmaceuticals than if they were treated and "cured" with abx.
Posted by Michelle M (Member # 7200) on :
quote:Originally posted by Areneli: Anybody has other views?
Well, somewhere around 400,000 people in the US suffer from "chronic fatigue syndrome."
Estimates are that 5% of the population suffers from "fibromyalgia."
If a HUGE percentage of these people really have lyme (and I am certain that is so), doctors are not only going to have egg on their faces but are going to lose patients.
Fibro and CFS patients get a LOT of drugs and lifelong doctoring.
Michelle
Posted by doc (Member # 14471) on :
exactly the reason m&m , treat sx . not cure the sick no $ in that. Doc
Posted by Lymetoo (Member # 743) on :
Lyme Disease Association would be one.
See the link on the left side of the screen?
Posted by adamm (Member # 11910) on :
The ALDF members are perhaps the foremost spirochetes' rights
activists of our generation.
Posted by Michelle M (Member # 7200) on :
I've actually written them a couple of times concerning some of the gross inaccuracies on their website.
Almost every ridiculous assertion on their disinformation site can be refuted with peer reviewed research.
Fortunately, I have not been holding my breath waiting for a response.
Michelle
Posted by bettyg (Member # 6147) on :
JB,
as tutu said, LYME DISEASE ASSN. led by Pat Smith
and LYME DISEASE RESEARCH CENTER, COLUMBIA UNIV., NYC ...
Posted by on :