Topic: Edit- FRIDAY- WATCH LIVE CFS- PANDORA- Proposed NEI Center
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Another quick point...
WHY doesn't PANDORA or those involved TELL anyone the details?
They've had a LONG time to do so ... but instead it has been kept hidden from all of us. And...
WHY do patients across the country have to research this to try to find out what someone they don't even know... and who doesn't know them or anything about their disease.. is planning for their future... without their knowledge?
When they HAVE responded... it is to kick others who want to know what the heck is going on.
Show me the beef!
Or shall I say..
They SHOULD have showed us the beef... but it is too late now.
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
HA!
BUT.. did you know?
If you eat the crust of the bread it makes your hair curly?
I can't believe parents are allowed to tell their kids that stuff and get away with it!
Having very curly hair... you know, I STILL don't eat the bread crust!
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
My understanding was that it grows hair on your teeth!
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
TC,
As always, thank you, thank you, thank you for your detailed updates. Sigh. This war has no end it seems. And, it is only
heating up more and more. It's exhausting and demoralizing. But, we have to trudge on anyway, and fight the good fight.
What the blazes should we do now to protest this travesty??
Posts: 3792 | From around | Registered: Mar 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Ahhhhhh.. protest! That's the word of the day!
Thanks Rumi for the kind words. What should we do, you ask?
I KNOW it is slow go.. but we need to continue to chip chip chip away at the IDSA.
If we continue to pull the rug out from under them, inch by inch, by proving they are wrong, corrupt, idiots, whatever...
It will advance our ability to get ourselves and our families REAL medical care.
I believe this specific problem is under control now.. (till additional attempts are made by this group IF they are made) ...
But it takes EVERYONE contributing a phone call, fax or letter when a Call to Action appears.
Without patient input.. and patient response... we will sit in a mud hole and stay there.
I do think ALL of us want what is best for everyone who has been hurt by Lyme and TBD's... we just need to NOT do things underhanded or shall I say underground.
And if someone has what they feel is a good idea.. it should be shared BEFOREHAND with the patients.
That will prevent these side distractions from occurring.. the distractions that keep us tied up and busy when we have other things that need to be done.
Thanks for your support.. always!
And hey there with the hairy teeth/bread crust theory... YULK on that!
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