posted
Be sure Richard Blu enthal gets a copy too, along w/all of our senators and representatives.
Posts: 975 | From California | Registered: Apr 2007
| IP: Logged |
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
I can't believe Volkman is stepping out into the spotlight saying these things. I've followed his work for years and he's always either toed the line or learned towards the IDSA slightly.
This is mind blowing, seriously.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
posted
OMG! Beautiful!!
Posts: 554 | From Naples, Italy | Registered: Jun 2006
| IP: Logged |
bettyg
Unregistered
posted
copying calda's info and breaking it up; couldn't read the pdf since it's timesnewroman...
Volkman submission to IDSA--Smells like courage to me
David Volkman, Emeritus Professor of Medicine and Pediatrics at SUNY, Stony Brook, and previously Senior Investigator with the National Institute of Allergies and Infectious Diseases,
has submitted the attached letter to the IDSA pursuant to its document submission process.
He has performed both clinical and bench research in Lyme disease since 1985.
Given his impeccable credentials, outlined in the first paragraph of his letter, his submission should carry considerable weight with the panel.
Among other things, he points to the suppression of research and stifling of the types of investigative inquiry necessary to begin to address pressing issues for Lyme patients--
the need for better testing, the need to acknowledge persistence and start looking for treatment protocols that help patients get better, the need to keep surveillance definitions outside the arena of patient diagnosis, the need to acknowledge the usefulness of PCR testing, and the need to avoid prophylaxis regimens that may promote chronic Lyme.
His letter smells a little bit like ``courage'' to me--a pretty rare commodity these days.
The introduction of his letter hits the ball out of the park by framing how to play fair when scientists disagree. **************************
Recommendations from Guidelines Committees ought to be evidenced based, unbiased, and valid, not consensus dictums based on the authoritative opinions of "experts" which should be objectively evaluated and often challenged.
Rather than avoid controversy and dissenting views to achieve unanimity the Guidelines should accurately reflect confirmed medical principals and both sides of unresolved questions.
Volkman then proceeds to dismantle the IDSA tightly controlled campaign to avoid scientific truth at all costs:
� Abundant evidence of persistence:
There is abundant evidence of persistent borrelia infection in both humans and mice (5-14).
Contrary to the claims of the IDSA guidelines and its Committee members, chronic borreliosis patients can be either seropositive or seronegative, i.e., individuals with persistent infection have or lack anti-borrelia antibodies (7,8,10-14). . . .
In the face of both animal (5,6,9) and human (7,8,10-14) evidence of persistent borreliosis following inadequately treated LD, it is disappointing that Guidelines members continue to dismiss the possibility of persistent borreliosis with unreferenced assertions that it has been ``discredited'' by ``current thinking.''
� IDSA ignores need for better diagnostic tools:
However instead of urging the development of better diagnostic tools to identify individuals with previous infections who may still be infected (36) with chronic symptoms, Guidelines members merely assert the unsupported dogma that chronically infected people are all seropositive.
This claim is simply untrue (7,8,10-14). Some of these committee members have testified as ``expert witnesses'' for insurance companies attempting to deny health benefits to chronically symptomatic individuals and written articles disputing its existence (17).
� IDSA stifles needed research:
Instead of fostering research on the optimal antibiotic regimen to eradicate persistent borreliosis in in vitro, animal, and human models, committee members have stifled investigation by their obdurate insistence that persistent borreliosis does not exist (15-19,22).
It remains unclear what combination of antibiotics and sustained treatment will eliminate a carrier state and minimize morbidity.
The IDSA's Committee should be a strong proponent of this sort of research rather than an obstacle.
� PCR testing is reliable and reproducible:
Committee members have assailed the PCR evidence from several labs that detected borrelia DNA in the CSF or joint effusions of seronegative patients (11,13,14).
Feder (17) cited problems with nested primers in disputing PCR evidence.
However, as shown below the PCR data was reliable and reproducible.
� IDSA suppresses science:
Despite Drs. Burgdorfer and Barbour having pioneered the isolation and growth of B. burgdorferi at the CDC, much of the current work on persistent borreliosis is being done in Europe as American work in humans may have been suppressed by prevailing dogma (21)
� CDC surveillance definition misused:
The CDC explicitly cautioned against using this restrictive case definition for clinical diagnosis and reiterated this proscription with every re-issuing of its ``Surveillance Definition.''
It has been a source of frustration and confusion that some in the medical community wrongly insist that a Lyme patient must satisfy CDC criteria (see memo below).
� IDSA panel had conflicts:
Members of the current IDSA Guidelines Committee for the Treatment of Lyme have been cited by the Connecticut Attorney General (33) for receiving payments from insurance companies as expert witnesses testifying against patient claims for treating chronic Lyme disease.
In addition, members received payments for consulting to LD testing companies regarding their accuracy in detecting LD serologically.
The Guidelines Committee has denied the existence of chronic borreliosis and has insisted that all LD patients are seropositive.
The Committee's conflicts of interest violate recommendations for guidelines committees (34).
� Need for research not opinion:
Finally, encouraging improved diagnostic (36) and therapeutic tools should be a major priority of a new Committee.
Recommendations should be evidence-based not unsupported opinions of Committee members.
Controversies need to be delineated not ignored in the interest of consensus.
The bottom line--Volkman puts his finger on the pulse when he notes that science in the US on persistent infection and the optimal way to treat that infection has been effectively silenced by the IDSA.
Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
That's a good letter. I hope it gets the attention it deserves.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
| IP: Logged |
LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
Wow amazing. I wonder if his courage in coming out with this letter will encourage any of his comrades to come forward with their real opinions also?
posted
Hi, What is the best way to send this to reps it is 10 pages and an attachment? Should I print it out and mail it? I can't e-mail them directly from e-mail it has to be through there homepage it appears?
I sent a copy of the article to my state reps, and attached a copy of the actual letter.
Posts: 845 | From Eastern USA | Registered: Jul 2006
| IP: Logged |
posted
Up, because this is SO important. I'm surprised so few acknowledged it. Someone is finally speaking the truth for us, people.
Posts: 845 | From Eastern USA | Registered: Jul 2006
| IP: Logged |
posted
I agree! This letter is amazing!
Posts: 588 | From Rhode Island | Registered: Jun 2006
| IP: Logged |
bettyg
Unregistered
posted
anyway any of you could copy it HERE? i went there but with my low vision, i could not begin to read anything and it has to be arial/verbana for me to read? anyone? thanks; perhaps that is why not much discussion here.
thank you for helping ME this time xox
IP: Logged |
nenet
Frequent Contributor (1K+ posts)
Member # 13174
"David Volkman, Emeritus Professor of Medicine and Pediatrics at SUNY, Stony Brook, and previously Senior Investigator with the National Institute of Allergies and Infectious Diseases, has submitted the attached letter to the IDSA pursuant to its document submission process.
He has performed both clinical and bench research in Lyme disease since 1985. Given his impeccable credentials, outlined in the first paragraph of his letter, his submission should carry considerable weight with the panel.
Among other things, he points to the suppression of research and stifling of the types of investigative inquiry necessary to begin to address pressing issues for Lyme patients--the need for better testing, the need to acknowledge persistence and start looking for treatment protocols that help patients get better,
the need to keep surveillance definitions outside the arena of patient diagnosis, the need to acknowledge the usefulness of PCR testing, and the need to avoid prophylaxis regimens that may promote chronic Lyme. His letter smells a little bit like ``courage'' to me--a pretty rare commodity these days.
The introduction of his letter hits the ball out of the park by framing how to play fair when scientists disagree.
Recommendations from Guidelines Committees ought to be evidenced based, unbiased, and valid, not consensus dictums based on the authoritative opinions of "experts" which should be objectively evaluated and often challenged.
Rather than avoid controversy and dissenting views to achieve unanimity the Guidelines should accurately reflect confirmed medical principals and both sides of unresolved questions.
Volkman then proceeds to dismantle the IDSA tightly controlled campaign to avoid scientific truth at all costs:
quote:Dr. Volkman wrote:
** Abundant evidence of persistence: There is abundant evidence of persistent borrelia infection in both humans and mice (5-14).
Contrary to the claims of the IDSA guidelines and its Committee members, chronic borreliosis patients can be either seropositive or seronegative, i.e., individuals with persistent infection have or lack anti-borrelia antibodies (7,8,10-14). . . .
In the face of both animal (5,6,9) and human (7,8,10-14) evidence of persistent borreliosis following inadequately treated LD, it is disappointing that Guidelines members continue to dismiss the possibility of persistent borreliosis with unreferenced assertions that it has been ``discredited'' by ``current thinking.''
** IDSA ignores need for better diagnostic tools: However instead of urging the development of better diagnostic tools to identify individuals with previous infections who may still be infected (36) with chronic symptoms, Guidelines members merely assert the unsupported dogma that chronically infected people are all seropositive.
This claim is simply untrue (7,8,10-14). Some of these committee members have testified as ``expert witnesses'' for insurance companies attempting to deny health benefits to chronically symptomatic individuals and written articles disputing its existence (17).
** IDSA stifles needed research: Instead of fostering research on the optimal antibiotic regimen to eradicate persistent borreliosis in in vitro, animal, and human models, committee members have stifled investigation by their obdurate insistence that persistent borreliosis does not exist (15-19,22).
It remains unclear what combination of antibiotics and sustained treatment will eliminate a carrier state and minimize morbidity. The IDSA's Committee should be a strong proponent of this sort of research rather than an obstacle.
** PCR testing is reliable and reproducible: Committee members have assailed the PCR evidence from several labs that detected borrelia DNA in the CSF or joint effusions of seronegative patients (11,13,14).
Feder (17) cited problems with nested primers in disputing PCR evidence. However, as shown below the PCR data was reliable and reproducible.
** IDSA suppresses science: Despite Drs. Burgdorfer and Barbour having pioneered the isolation and growth of B. burgdorferi at the CDC, much of the current work on persistent borreliosis is being done in Europe as American work in humans may have been suppressed by prevailing dogma (21)
** CDC surveillance definition misused: The CDC explicitly cautioned against using this restrictive case definition for clinical diagnosis and reiterated this proscription with every re-issuing of its ``Surveillance Definition.''
It has been a source of frustration and confusion that some in the medical community wrongly insist that a Lyme patient must satisfy CDC criteria (see memo below).
** IDSA panel had conflicts: Members of the current IDSA Guidelines Committee for the Treatment of Lyme have been cited by the Connecticut Attorney General (33) for receiving payments from insurance companies as expert witnesses testifying against patient claims for treating chronic Lyme disease.
In addition, members received payments for consulting to LD testing companies regarding their accuracy in detecting LD serologically. The Guidelines Committee has denied the existence of chronic borreliosis and has insisted that all LD patients are seropositive.
The Committee's conflicts of interest violate recommendations for guidelines committees (34).
** Need for research not opinion: Finally, encouraging improved diagnostic (36) and therapeutic tools should be a major priority of a new Committee. Recommendations should be evidence-based not unsupported opinions of Committee members. Controversies need to be delineated not ignored in the interest of consensus.
The bottom line--Volkman puts his finger on the pulse when he notes that science in the US on persistent infection and the optimal way to treat that infection has been effectively silenced by the IDSA."
The entire letter is a must-read, and includes all of the referenced research and other citations, and is in pdf form at this link:
(betty and others that need to view the pdf in the proper font size and fonts, you should be able to change those in your pdf reader application. Otherwise please let me know and I will copy that here for you too - it's going to be a bit messy though since it is 10 pages long. Wow!)
nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Hey nomoremuscles, just a suggestion, but you might get more readers if you make the title a bit more noticeable so it doesn't get skimmed over. I'm not sure what would be best, but maybe something like:
"Emeritus Prof of Medicine and Pediatrics at SUNY, once Snr Investigator w/NIAID sends rebuttal to IDSA Committee!!!"
Good idea. I will try. Though, knowing me, I'll probably end up with something even lamer that what I started with!
Posts: 845 | From Eastern USA | Registered: Jul 2006
| IP: Logged |
nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
cool, I am bumping this for BettyG and others!
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Wow, Dr Volkman, deserves alot of thanks for speaking up to the IDSA about the truth.
That is a totally awesome letter he wrote.
Anyone know how to reach him by email?
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
nomoremuscles,
It would be great if Dr Volkman's letter to the IDSA could be sent to Greta VanSustern and Oprah, who are both looking at info about lyme that we and others have sent....as long as it is not a problem for Dr Volkman to share the info with them.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
posted
NENET, god bless you for bringing that over here and your summary as to what it was all about! i really appreciate the time/effort you took to bring it here.
thank you also for breaking it up my style; made an easy read thanks to your thoughtfulness!
no, that's asking way to much to do 10 pages and copy here!!
IP: Logged |
-------------------- Take Care, DakotasMom01 Posts: 371 | From NJ | Registered: Dec 2007
| IP: Logged |
nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
quote:Originally posted by bettyg: NENET, god bless you for bringing that over here and your summary as to what it was all about!
BettyG , you are very welcome for the copy paste (wasn't any trouble, honest), but I did NOT have anything to do with that wonderful summary. That was written by the person that writes the blog.
I put quotes around that part to signify that but forgot to also put the author's name - I couldn't find it on the web page.
Sorry for the confusion. She really hides her name on her site (at least it was hard for this neuro-Lyme patient to find it)!
***Lorraine Johnson*** who writes the blog deserves a hearty thanks for bringing this to everyone!
posted
It's great that Dr. Volkman has taken the time to write a letter and address the points he made. I wonder how much it will influence the IDSA considering his title is now Professor Emeritus, which indicates he is probably retired.
Perhaps he had to wait until he was retired to speak his mind. Regardless of the impact his letter may or may not have on those who most need to consider revising their position, I'm very grateful he took the time to address this issue. His letter was well written and I am encouraged by his actions.
Thank you for sharing this with us.
Posts: 487 | From USA | Registered: Feb 2002
| IP: Logged |
I wondered about that too. I don't know if he's retired or not. But either way it seems that most of these guys have to be very careful not to rock the boat on their way up. Research appears to be rougher than MMA fighting or a sale at Filene's (sp?) I am assuming this is the reason we haven't seen many strong statements come from researcher Fallon's corner just yet. Once at the top, I would think they are free, or freer anyway, to speak their minds -- yet, as we've seen, most still don't step out of line.
This is the first instance of this I can remember -- have there been others? As far as influencing the IDSA, unless others jump on the wagon, you're right, it may not be enough -- but, even if it's not enough to turn the ship around, it's still not something that can be ignored.
Posts: 845 | From Eastern USA | Registered: Jul 2006
| IP: Logged |
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
A dose of courage equals hope for all of us.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
| IP: Logged |
posted
Since I have been back to work, I haven't been on in quite a while.
This is wonderful!
THanks for posting!!
Posts: 217 | From Earth | Registered: Feb 2010
| IP: Logged |
Amanda
Frequent Contributor (1K+ posts)
Member # 14107
posted
Just so you know, this was written 2 and 1/2 years ago, and not only was it submitted to IDSA as part of the failed IDSA re-evaluation process, Dr. Volkman was allowed to phone into the re-evaluation meeting.
My guess is that it was his testimony that got the one tiny change that was made (the panel was split 4-4 on whether the testing was any good)
But agree it is an amazing letter. I bring copies of it to medical professionals if I think they are open.
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
| IP: Logged |
Abxnomore
Frequent Contributor (5K+ posts)
Member # 18936
posted
I already pointed that out above that it is from 2009, but thanks for doing so again.
Still good info but it's not new on the scene.
Posts: 5191 | From Lyme Zone | Registered: Jan 2009
| IP: Logged |
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
When you click on that, it will download, and then you can open the pdf file.
I like the article, because it discusses the implications of his letter, and saves my poor brain from having to do the work.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
xox
![[group hug]](graemlins/grouphug.gif)
![[kiss]](graemlins/kissing.gif)
Printer-friendly view of this topic