Re: IDSA report due at end of April

[Guest guest]

Sigh I smell a big stinky dead fish.

www.lyme-resource.com <http://www.lyme-resource.com/>

You can lead a person to a fact, but you can't make them think! -

_____

From: UtahLyme [mailto:UtahLyme ] On Behalf

Of DKL

Sent: Saturday, April 03, 2010 8:51 PM

jblral

Subject: [utahLyme] IDSA report due at end of April

Lyme Policy Wonk:

The IDSA will issue its final report by the end of April. Did you catch

that? Yes, it made an announcement and buried it deep within its website for

enterprising spelunkers to find.

Read more here:

http://www.lymedisease.org/news/lymepolicywonk/389.html

[Guest guest]

>

just thought I should mention we run into similar problems in Netherlands. We

organised a petition for our parliament demanding changes in how Lyme is handled

by the medical authorities. New guidelines are in the works here as well, due

later this year; the major Lyme patient group is represented in the commission

that is making the new guidelines.

Now that it is clear that there are more than enough people who have signed the

petition and that it will go to parliament later this year, the heat is on. High

profile medical and scientific 'professionals' are writing letters and stories

in the newspapers about the Lyme 'hype' and all the usual IDSA garbage stories.

Some of these people have direct connections with the IDSA mob, so it is

probably all coordinated in the US. The EU is also working on new Lyme

guidelines that are heavily influenced by the IDSA garbage (the position papers

cite mostly work from Steere/Wormser etc. and almost nothing about persistent

infection, serious problems with tests, etc.

IMHO the decision has already been made: our new Lyme guidelines will have some

cosmetic changes, but it will not have any effect in real life. They will keep

denying what is obvious for everyone who opens his eyes. It is very sad how such

a small group in the US can have such a devastating effect on the lives of

people all over the world

[Guest guest]

Hiya - I agree the IDSA rules big in Europe and many specialists are afraid to

treat Lyme long term due to fear of reprisal. My own ID specialist refused to

believe I had Lyme due to negative (despite positive results through 2

different German labs) and despite all the history and symptoms of Lyme (instead

preferring to use the terms chronic fatigue syndrome which doesn't even have a

test to confirm) and she said that I was already on too much medication (by that

time I had been given 3 months antibiotics). In her letter to my GP she cited

the IDSA guidelines, surprise surprise.

The Health Protection Agency in the UK and the Health Protection Surveillance

Centre in Ireland both quote IDSA guidelines despite petitions being signed by

many sufferers to try and get the governments to realise that the IDSA

guidelines are way too short sighted and restrictive. Let's hope that the

governments will eventually realise that the more Lyme sufferers are ignored the

more expensive they become in the longer term - who on earth wants a nation of

permanently sick people?

> >

>

> just thought I should mention we run into similar problems in Netherlands. We

organised a petition for our parliament demanding changes in how Lyme is handled

by the medical authorities. New guidelines are in the works here as well, due

later this year; the major Lyme patient group is represented in the commission

that is making the new guidelines.

>

> Now that it is clear that there are more than enough people who have signed

the petition and that it will go to parliament later this year, the heat is on.

High profile medical and scientific 'professionals' are writing letters and

stories in the newspapers about the Lyme 'hype' and all the usual IDSA garbage

stories.

>

> Some of these people have direct connections with the IDSA mob, so it is

probably all coordinated in the US. The EU is also working on new Lyme

guidelines that are heavily influenced by the IDSA garbage (the position papers

cite mostly work from Steere/Wormser etc. and almost nothing about persistent

infection, serious problems with tests, etc.

>

> IMHO the decision has already been made: our new Lyme guidelines will have

some cosmetic changes, but it will not have any effect in real life. They will

keep denying what is obvious for everyone who opens his eyes. It is very sad how

such a small group in the US can have such a devastating effect on the lives of

people all over the world

>

[Guest guest]

- so you're in the Netherlands? Am thinking this topic is politically

interesting - how about posting something about it at www.lymenet.org in the

Activism section for folks to read about and comment on? Thx - Robin

[ ] Re: IDSA report due at end of April

>

just thought I should mention we run into similar problems in Netherlands. We

organised a petition for our parliament demanding changes in how Lyme is handled

by the medical authorities. New guidelines are in the works here as well, due

later this year; the major Lyme patient group is represented in the commission

that is making the new guidelines.

Now that it is clear that there are more than enough people who have signed the

petition and that it will go to parliament later this year, the heat is on. High

profile medical and scientific 'professionals' are writing letters and stories

in the newspapers about the Lyme 'hype' and all the usual IDSA garbage stories.

Some of these people have direct connections with the IDSA mob, so it is

probably all coordinated in the US. The EU is also working on new Lyme

guidelines that are heavily influenced by the IDSA garbage (the position papers

cite mostly work from Steere/Wormser etc. and almost nothing about persistent

infection, serious problems with tests, etc.

IMHO the decision has already been made: our new Lyme guidelines will have some

cosmetic changes, but it will not have any effect in real life. They will keep

denying what is obvious for everyone who opens his eyes. It is very sad how such

a small group in the US can have such a devastating effect on the lives of

people all over the world

[Guest guest]

>

>

> - so you're in the Netherlands? Am thinking this topic is politically

interesting - how about posting something about it at www.lymenet.org in the

Activism section for folks to read about and comment on? Thx - Robin

no, that was me - knot_weed.

I did participate on lymenet long ago, but it was a very unpleasant experience;

I won't go back there.

[Guest guest]

Ok - Knot_weed - so you're in the Netherlands - sorry to hear about your bad

experience there. The site has new monitors now and they're taking their job

very seriously - posts need to go in the right category and everyone has to be

civil - what is the world coming to? lol - you could try again, since we're all

supposed to behave ourselves there now - Robin

[ ] Re: IDSA report due at end of April

>

>

> - so you're in the Netherlands? Am thinking this topic is politically

interesting - how about posting something about it at www.lymenet.org in the

Activism section for folks to read about and comment on? Thx - Robin

no, that was me - knot_weed.

I did participate on lymenet long ago, but it was a very unpleasant experience;

I won't go back there.