Re: OT: lyme guidelines in Netherlands

October 19, 2010

Wonderful news!

-

..

October 19, 2010

Sounds like a big step in the right direction!

www.lyme-resource.com

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

> [ ] OT: lyme guidelines in Netherlands

>

> In Netherlands there seems to be some momentum for change,

> after we had to accept the US IDSA guidelines for years. Our

> diagnostics and treatment situation is similar to the US, or

> probably a bit worse. ILADS docs do not exist here, although

> there are a few MD's who unofficially use ILADS protocols.

>

> Last week our Parliament accepted a petition from Lyme

> patient groups with many suggestions for improvements in Lyme

> diagnostics, treatment and research. This is a rare event,

> until now there have been just a few accepted petitions.

>

> Yesterday we had a well known consumer advice TV program that

> was dedicated to the Lyme testing troubles, and they fully

> followed the point of view of the lyme patients groups. This

> is a first, we don't have very good experience with the TV

> media when it comes to LD. Over 15% of the Dutch population

> watched the show!

>

> I hope this will give the IDSA followers some hard times, and

> help to start the necessary changes

>

> ------------------------------------

>

> Buy Healing Lyme: Natural Healing And Prevention of Lyme

> Borreliosis And Its Coinfections by Buhner at one of

> these locations:

> http://tinyurl.com/3bgm5d

>

October 19, 2010

Excellent news! Sounds like the patient groups are organizing. They need to do

as much as possible. This is a battle for health. No one should be silent

anymore - everyone needs to speak up for awareness, better testing and

treatment. We are doing a lot in America now - having conferences and workshops,

showing the Under Our Skin film, getting copies of Cure Unknown by Pam Weintraub

into people's hands, speaking up in doctor offices and giving them info, having

Lymewalks and other similar events, doing much patient support group educating,

getting the word out to the community in every way we can think of, including

flyering bulletin boards, handing notices out to dog walkers about pets, etc. Be

creative! Think of awareness actions you'd like to do!

Has anyone written any Lyme books or made any films in the Netherlands?

I'm in California and we just finished having six Lymewalks throughout the

state. You can see mention of them at www.lymedisease.com, 2010 CALDA Lymewalks.

The last one was televised this past weekend. People pay more attention when

there is an organized event like that for a health condition. The walks were

also fundraisers for research sponsored by the California Lyme Disease

Association, with tax-deductible contributions made online through First Giving,

an organization set up for fundraising donations. Here in San Francisco, we

marched down our main street, chanting and giving out 800 awareness slips to the

public, followed by education afterwards at the library for adults and kids. All

our state events went really well, and I recommend everyone organizing awareness

events together! - Robin

[ ] OT: lyme guidelines in Netherlands

In Netherlands there seems to be some momentum for change, after we had to

accept the US IDSA guidelines for years. Our diagnostics and treatment situation

is similar to the US, or probably a bit worse. ILADS docs do not exist here,

although there are a few MD's who unofficially use ILADS protocols.

Last week our Parliament accepted a petition from Lyme patient groups with many

suggestions for improvements in Lyme diagnostics, treatment and research. This

is a rare event, until now there have been just a few accepted petitions.

Yesterday we had a well known consumer advice TV program that was dedicated to

the Lyme testing troubles, and they fully followed the point of view of the lyme

patients groups. This is a first, we don't have very good experience with the TV

media when it comes to LD. Over 15% of the Dutch population watched the show!

I hope this will give the IDSA followers some hard times, and help to start the

necessary changes

October 20, 2010

>

> Has anyone written any Lyme books or made any films in the Netherlands?

There is a Dutch film (a bit like Under Our Skin, I guess), I haven't seen it

yet and it is probably not even out yet officially.

There are no Dutch Lyme books that I know of, probably insufficient market. Many

people can read some english and use US books. But for medical terms,

diagnostics/treatment advice etc. this can be confusing or even dangerous if the

reader does not understand the foreign language.

We have considered translating some of the best foreign books on lyme (e.g.

there is a great book from a German MD, Hopf-Seidl, but most people here cannot

read German language very weel). Translating is a lot of work because the

situation regarding guidelines, testing and treatment is often different in

every EU country.

There is a lot of LD publicity in magazines etc. lately, but it is not all good

(accurate). Just like in the US we have to battle the fairly tales from

government and scientific / medical community that say that lyme is rare, easy

to diagnose and easy to cure, and that patients groups are hysterical.

> I'm in California and we just finished having six Lymewalks throughout the

state. You can see mention of them at www.lymedisease.com, 2010 CALDA Lymewalks.

I'm sure some of the people in our patient group follow news from CALDA, ILADS

etc. Sometimes these are great ideas to follow, and sometimes it just doesn't

work here. We are thinking about fundraising to do our own scientific research

(in case the government does not start doing the job). When it comes to

fundraising I'm sure we can learn a lot from the US

October 20, 2010

Hi - thx for getting back to me - the fundraising for CALDA's Lyme research

projects worked very well through the www.firstgiving site online - very secure,

don't know whether there was any overhead - probably very low if at all.

And tied in with a community event. If you see the fundraising pages for the

CALDA Lymewalks, it meant a lot for people to contribute on behalf of someone

they know. Also contributions could be tied to a particular area's Lymewalk,

which many wanted to do. People with Lyme don't do marathons very well, so the

event needs to be gentle. Most of the Lymewalks consisted of a gentle walk with

a picnic.

I really recommend planning community events, because it works in all ways - for

the local gatherings and also for the impact it makes on the whole, like all of

California heard about all six walks. So maybe for patient groups throughout the

Netherlands to figure out what they want to do. It's ok to have each local group

do a variation, as long as it's all for the same cause. Like San Francisco had

the only march, since that's actually expected behavior here - people have

marches for their causes!

One more thing - we have May Lyme Disease Awareness month every year, and this

is a good time to get as much media publicity as possible for the cause. Do you

have this month recognition there? It definitely promotes awareness. - Robin

[ ] Re: OT: lyme guidelines in Netherlands