LYMEPOLICYWONK: Artful Dodgers, 1,2,3 : the IDSA, the NIH and the IOM Makes Three
What do Representatives Chris Smith and Frank Wolf have in common? They know how to ask the right people hard questions. What do the IDSA, the NIH, and the IOM have in common? They’ve honed the skill of the artful dodger. Representatives Smith and Wolf want to know why the NIH “stepped back” from its charge to run a state of the science conference and handed that hot potato to the IOM. One big difference between the NIH process and the IOM process? The NIH process considers bias a conflict of interest, meaning IDSA folks wouldn’t be sitting on an NIH panel. But, drum roll. . .the IOM permits panels to be biased and coincidentally has a panel that consists almost exclusively of IDSA folks, 4 of 6 panel members. Oh, and one more thing, the IOM is not technically considered to actually be ‘the government’. This is a picture perfect example of plausible deniability. The NIH didn’t stack a panel. The IOM did with IDSA folks. But, hey, they like bias and they are not accountable, are they? A copy of the letter from Representatives Smith and Wolf to Dr. Francis Collins of the NIH together with Collins response can be downloaded at the bottom of this blog post.
You can contact Lorraine Johnson at lbjohnson@lymedisease.org.
Interesting. In the response, Wolf claims the panel will be unbiased. So what is the upshot? Are any changes going to be made? What can we do about this? Are the other two panel members ILADS doctors?
hi lorraine/all 🙂
when i received this email, i printed it off plus the attachment to read at drs. office while my husband was being seen by his neurologist PARKINSON's dr.
i got most of wolf's letter read; then we were called in.
i asked hubby's neurologist why he would NOT sign the igenex western blot igm/igg blood lab slip to get this drawn and sent to calif.
"he didn't feel it was necessary; your husband has late-stage parkinson's; his symptoms confirm this and his rolling-hand tremors do as well."
told him i felt his undiagnosed lyme was the primary with parkinson's being the secondary illness he has; i wanted VALIDITY that hubby does have lyme, and this testing by using igenex's specialty lab testing ALL protein bands would prove this.
asked where they would send his blood if tested there; to IOWA CITY'S HYGIENIX LAB "who they have a contract with".
we talked more & i'd share the lyme war controversy with him since he's IOWA'S PRES. OVER ALL DRS. IN IOWA and testifies in congress on a regular basis.
the clinic's infectious dr. recently left for another place to practice; we're without AGAIN.
neurologist would send us to des moines where MANY INFECTIOUS DRS. ARE; NO THANKS. i want ILADS our chronic llmds instead.
"aren't they all working as ONE group by now?" NOPE. he knew their had been a 1 day conference last july, and what was the outcome. so i told him … left as is.
panel didn't live up to what it was supposed to do, etc. he was really busy so that ended our conversation.
since i had YOUR above comments & all pages of both letters, i had their receptionist copy them, and i left a copy for him. NOT TALKED TO HIM SINCE.
thought he'd be interested.
FORGOTTEN IMPORTANT POINT..
***************************
i said IOM has the tick/vector-borne disease committee now since NIH pawned us off onto iom; iom is sending their comments to this ANONYMOUS group who will determine certain things.
YET WE REPLIERS are required to furnish our full names, addresses, and EMAILS; yet they can remain anonymous.
also many members of this committee are IDSA MEMBERS also; so conflicts of interest already.
"betty, iom is a highly respected agency. i've been working with bruce bailey, HR from iowa, on TWO health studies of things but they are NOT about lyme/co-infections. i have complete confidence in them that they will do a good job on this."
also asked this dr. why when i called him at 10 pm AT HOME leaving message on his answering machine, i wanted him involved in my husband's being in hospital since he was hallucinating & hadn't slept in 2.5 days.
he was admitted for other health reasons: urinary tract infection, blood sepsis infection, & ecoli; not for his parkinson's symptoms.
he could have gotten MUCH WORSE by taking a SLEEPING PILL when they are running high fevers, which he was.
gabby lol bettyg, iowa lyme activist
mdjunction.com lyme board group leader signing off 🙂
hi lorraine/all 🙂
when i received this email, i printed it off plus the attachment to read at drs. office while my husband was being seen by his neurologist PARKINSON's dr.
i got most of wolf's letter read; then we were called in.
i asked hubby's neurologist why he would NOT sign the igenex western blot igm/igg blood lab slip to get this drawn and sent to calif.
"he didn't feel it was necessary; your husband has late-stage parkinson's; his symptoms confirm this and his rolling-hand tremors do as well."
told him i felt his undiagnosed lyme was the primary with parkinson's being the secondary illness he has; i wanted VALIDITY that hubby does have lyme, and this testing by using igenex's specialty lab testing ALL protein bands would prove this.
asked where they would send his blood if tested there; to IOWA CITY'S HYGIENIX LAB "who they have a contract with".
we talked more & i'd share the lyme war controversy with him since he's IOWA'S PRES. OVER ALL DRS. IN IOWA and testifies in congress on a regular basis.
the clinic's infectious dr. recently left for another place to practice; we're without AGAIN.
neurologist would send us to des moines where MANY INFECTIOUS DRS. ARE; NO THANKS. i want ILADS our chronic llmds instead.
"aren't they all working as ONE group by now?" NOPE. he knew their had been a 1 day conference last july, and what was the outcome. so i told him … left as is.
panel didn't live up to what it was supposed to do, etc. he was really busy so that ended our conversation.
since i had YOUR above comments & all pages of both letters, i had their receptionist copy them, and i left a copy for him. NOT TALKED TO HIM SINCE.
thought he'd be interested.
FORGOTTEN IMPORTANT POINT..
***************************
i said IOM has the tick/vector-borne disease committee now since NIH pawned us off onto iom; iom is sending their comments to this ANONYMOUS group who will determine certain things.
YET WE REPLIERS are required to furnish our full names, addresses, and EMAILS; yet they can remain anonymous.
also many members of this committee are IDSA MEMBERS also; so conflicts of interest already.
"betty, iom is a highly respected agency. i've been working with bruce bailey, HR from iowa, on TWO health studies of things but they are NOT about lyme/co-infections. i have complete confidence in them that they will do a good job on this."
also asked this dr. why when i called him at 10 pm AT HOME leaving message on his answering machine, i wanted him involved in my husband's being in hospital since he was hallucinating & hadn't slept in 2.5 days.
he was admitted for other health reasons: urinary tract infection, blood sepsis infection, & ecoli; not for his parkinson's symptoms.
he could have gotten MUCH WORSE by taking a SLEEPING PILL when they are running high fevers, which he was.
gabby lol bettyg, iowa lyme activist
mdjunction.com lyme board group leader signing off 🙂
An important read for all of us. Smith and Wolf are working hard for the Lyme community and their efforts are very appreciated.