Topic: ACTION ALERT- Lyme Included as Autoimmune (NIH, CDC approve) 10/18/09
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
I'm watching now.
Does the Lyme green bracelet mean Lyme, or CFS?
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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canbravelyme
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Member # 9785
posted
TC: How quickly did they get this hearing together? Did this begin with the discovery of the virus XMRV?
The Georgia Department of Human Services has requested CDC, in collaboration with Emory University, to determine the relevance of unwellness among adolescent wards of the Georgia foster care program as these children manifest an excess of CFS risk factors. Planning will begin in late 2009, field work on the initial survey will begin in 2010, initial analyses will be complete by late 2010, and intervention studies will occur through 2013.
* Identify risk and resilience factors for CFS"
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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Light - you have said (I believe on several posts) you are hearing "fear" not "fact".
Well the fear you may be hearing is b/c I and many of my fellow NJ Lyme patients and caregivers have the facts. And I and many of MY NJ neighbors are NOT happy about this at all.
Why don't we just suggest to anyone that is not sure about this situation to make a few calls for themselves. I am sure many have already done so.
I did and got the facts myself. Not that I didn't believe what TC posted, I am just a curious soul.
Thank you TC for posting the facts.
Yes, RWJ is involved. Dr. F (male) talked to me, and he said that he would take calls if anyone had questions. So if you don't believe what TC is reporting, make your own call and hear it for yourself. Oh, and by the way, Dr. Friedman was very polite and curtious on the phone. Nice guy - who admitted to me that he has done NO research for Lyme d. but not to worry b/c he has "the basic concept of Lyme" and this is a direct quote.
Yoo Hoo - wake up!
The fact that those 2 words "Lyme disease" is causing such a ruckus should tell you something.
I can't watch what you have posted TC(some hearing??)it may just be that I am having a rotten day but it is not working for me. So I am following your posts - keep it up if you can and thanks.
-------------------- 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
Canbrave said.. "Does the Lyme green bracelet mean Lyme, or CFS?"
Since I didn't hear the words "Lyme disease" mentioned in the hearing.. and I didn't hear all the presentations for both days.... so it may have been mentioned...
My GUESS is they have adopted our lime green color to show unity for their cause. (??)
Lime green has always been "our color", if you will.. for as long as I can remember... and I don't know when or where they have adopted it.
It could be a coincidence.. and/or there could have been Lyme patients behind it?
I honestly don't know.
Canbrave said... "How quickly did they get this hearing together? Did this begin with the discovery of the virus XMRV?"
Somewhere in piles of notes I THINK I remember seeing that it had been in the works for a while. (?)
MAYBE even planned as a regular thing.. a committee gathering where they have to report and folks can join in if they sign up?
I guess I sound dumb... oh well, nothing new there...
But I honestly don't remember. I've read soooooooo much stuff.. it is all becoming a blur tonight.
Sorry I am VERY tired this evening.... but if you want me to check through the notes to find out... I certainly will.
OR.. maybe someone else can come up with the answers that I am not able to recall right now?
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
NJ mom...
You didn't miss much. After two days it was decided the CDC will hear suggestions from the CFS committee that a new definition will be considered for CFS.
I'm sure I am missing some stuff they feel is important.. but that is what I got out of it after two LONG days of listening.
posted
I guess it boils down to - would I send anyone I met who was in dire straits like I was years ago to this brand new NIE Center to get all better?
No way. I would send them to an experienced LLMD. Without an accurate Lyme test, this center should not exist with Lyme in the mix.
Thanks Tincup for all your hard work!!
Posts: 472 | From New Jersey | Registered: Dec 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Bingo cockapoo! You said..
"Without an accurate Lyme test, this center should not exist with Lyme in the mix."
That is another reason for not putting us in a duck motel facility that is focusing on CFS and "unknowns".
Healer dealer..
Thanks for explaning your previous post. You had me going HuH?
You said.. "But a little reality check - New Jersey is probably heading for bankruptcy. So, who knows if there is funding out there."
There is suppose to be stimulus funding floating around ... from what I hear.
Don't know who is scheduled to get it.. but my bet is the competition is fierce.
I also understand.. but not being IN New Jersey and not having first-hand knowledge I could be wrong...
But wasn't/isn't the University where this center would be under a lot of scrutiny already... and in a good deal of trouble for doing various ding dong things?
You know, scandels and such?
If that is the case... we need to be even more careful.
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
I really don't like this whole thing.
The CDC (read: IDSA) and NIH (read: IDSA) were "in agreement" Lyme disease be categorized as a "Neuro-Endocrine Immune Disorder".
How is it, despite the fact the IDSA Lyme disease guidelines are under review due to opposition from ILADS and CALDA (ultimately), no one consulted with ILADS or CALDA prior to including Lyme disease in this proposal?
This is a strategic move by the IDSA (under the guise of the CDC and NIH) to position itself in such fashion as to become the "obvious choice" for the federal government to allocate the research dollars we've been fighting for - if the funding finally does go through.
And these centres are proposed to arise State by State?
If you can get _one_ State to agree, then you set a precedent for another State. There is exponential growth from there.
A similar strategy was taken by the IDSA and American Academy of Neurology (AAN) in legitimizing their "independent" findings, with repect to Lyme disease, by using the same key panelists (Wormser, Shapiro et al.) and supporting each others' findings.
Having the CDC and NIH supporting Lyme disease as an NEID equates to the IDSA legitimizing the AAN's findings.
CDC (read: IDSA) + NIH (read: IDSA) = IDSA (read: Wormser, Shapiro et al.) + AAN (read: Wormser, Shapiro et al.).
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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Tincup
Honored Contributor (10K+ posts)
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posted
You got it canbrave...
You said..
"And these centres are proposed to arise State by State?"
They are proposing having 5 nationally to start with from what I've noted.. and some even internationally.
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
Internationally?
Where do things stand now with respect to Lyme being removed from the P.A.N.D.O.R.A. list?
I'm with you: it's great they would like to finally address those with Fibro and Chronic Fatigue.
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
"Where do things stand now with respect to Lyme being removed from the P.A.N.D.O.R.A. list?"
They obviously aren't talking... at least I've not heard a peep out of them for a few days now.
As far as the Center in NJ goes.. not looking likely at this time... Lyme or no Lyme.
I too would love to see the CFS & Fibro folks catch a break.
I would help them if I could.. just not when they drag Lyme in with it.
posted
Good - this does not look good to me either, certainly regarding Lyme, which is a known bacterial condition. Plus the co's.
And the rest of what's planned doesn't look good either - FM is not an unknown condition - it is coming in Lyme for a lot of us. They need to learn that fact.
MCS can be related to liver genetic difficulties which can be tested for through the Genova Diagnostic detoxigenomic test and the Yasko test. The testing results can be worked with, supplementwise. They need to know that.
Gulf War Syndrome has been tied to mycoplasma exposure, plus a soup of other chemicals, so sez Garth Nicolson, who's been working with the vets and their families ever since the early 90s.
Maybe CFDs is going to correlate with virus(es?) - they need to be aware of that.
These conditions should not be lumped, they should not be belittled, and they should not be controlled by RWJ/CDC/NIH. They need people who are going to do honest scientific work.
[ 11-09-2009, 05:29 AM: Message edited by: Robin123 ]
Posts: 13171 | From San Francisco | Registered: May 2006
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canbravelyme
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Member # 9785
posted
I'm not sure how the centre is going to run things; CFS is likely caused by the recently found virus - once the etiology's been found, is CFS discharged from P.A.N.D.O.R.A.'s mandate only to have to find funding elsewhere?
T.C.: Should we still be writing in, as requested at the beginning of this thread?
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Robin 456843937.. I agree!
Hey canbrave...
I just made a call because I hadn't gotten an update in the last couple of days.. been kinda crazy busy with other stuff.
Word is... Folks are working on this and said they are also assessing the impact of the election this past Tues in NJ to see what next step should be.
Also waiting for results from various meetings... if that makes any sense.
Was told we'd be working on it this weekend and some news about the next steps, if any, should be forthcoming by mid-week, next week.
Sorry to be so brief.. but playing a waiting game at the moment.
Thank you for keeping this on your plate. It is an important issue.
canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
You let me know what I can do.
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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cbl - you could become a US citizen, move to New Jersey, and run for governor - we'll support you -
Posts: 13171 | From San Francisco | Registered: May 2006
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canbravelyme
Frequent Contributor (1K+ posts)
Member # 9785
posted
R123: You may find it amusing that I would consider applying for status as a refugee of the Canadian Health Care system.
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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posted
cbl - if I am reeding you correctly, you would consider a political asylum test? from one to another? lol
Posts: 13171 | From San Francisco | Registered: May 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Just got word an update will be headed our way soon. A couple of official loose ends to tie up and then we will hear something.
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