Guest guest Posted August 11, 2008 Report Share Posted August 11, 2008 The purpose of the " bickering " that has occurred in recent days regarding AAHA/TomFox/e Creacy has been to shed light on a very, very dark, black corner of the world of off-label HBOT. As for the two s who recently posted the suggestion of starting another group, go ahead. As for the others who chimed in advocating the same, you are more than welcome, and I hope you can do this better than me. If Medicaid reimbursement is what you really seek, by all means, please pursue it. If you get stuck, call me. 404-725-4520. That's my cell number. Call me I'll be glad to help in any way I can. There may be posts about activities and stated positions of individual persons, but they are not " personal attacks. " I'll explain with some background. I have been a parent advocate and an attempted force for change in the fight for accessing off-label HBOT since 1999. I have never sought fame or fortune in this venture, and my position(s) have never changed. I have been consistent throughout. I'm just another father of a brain-injured child. Prior to recent events, I have tired of Tom Fox's personal vendetta against Oxyhealth and have repeatedly asked him to file formal complaints with the FDA. In March, I demanded such filings before Mr. Fox can post here again. That's been almost six months, and to my knowledge he hasn't filed a complaint. Why not? If he really has safety concerns, then why not file a complaint? In the interim, I received by fax, documentation (a receipt) signed by Mr Fox where he had personally altered a portable chamber and made it in direct violation of ASME-PVHO and FDA. While I personally think it was a stupid decision of Mr Fox to (a) make the alterations, and ( create ASME-PVHO and FDA safety violations, and then © add his signature to the document verifying all of the above, I also believe it's an indicator of his own personal arrogance. Prior to my understanding and disclosure that AAHA is a fraudulent 501c3, I had one public conflict with Mrs. Creacy, and that was her public endorsement of an announced " study " produced and financed by United Cerebral Palsy at which the protocol was to be a PET scan (not SPECT scan), 20 HBOT treatments, and then a second PET scan 6 months later. This was in (I think) 2003. In 2003, I publicly expressed my opinions and publicly exposed the danger of UCP's-eCreacy-endorsed study because UCP is regarded as an expert on all things having to do with cerebral palsy. I state this opinion based on personal experience. When we first sought legal representation in 1999 for our case, we went to Georgia's Protection and Advocacy Office (http://www.thegao.org), and they refused to represent us based on the false statements about HBOT that UCP had published on UCP's web site. In our very first court appearance, the Georgia Administrative Law Judge (ALJ) came within a hair of dismissing our case because 90% of the Georgia Attorney General's first brief was comprised of falsehoods about HBOT published on the UCP web site. I learned in 1999 that United Cerebral Palsy has a lot of power and authority regarding issues of care of children with cerebral palsy. Therefore, it's important, it's critical for my child's health that UCP's information is accurate. Because UCP refused to revise it's position on HBOT, and in fact was seeking to produce the study wholly designed and intended to produce a negative result regarding HBOT efficacy in cerebral palsy, an article was published clarifying UCP's intentions regarding this eCreacy-endorsed study. See " Keeping the Palsy in Cerebral Palsy. " http://ihausa.org/newsletters/newsletter/pdf/2004_Oct_Nov.pdf Here's how the study would have produced the negative result: 1. PET scans are live scans that measure brain metabolism, i.e., brain function, which means the patient cannot be sedated because the brain would be sedated and an accurate metabolism measurement couldn't be obtained in a sedated state. Therefore the patient had to lie perfectly still during the 30+ minute scan. This would be impossible for a cerebral palsy child who cannot control his/her body. (On the other hand, in SPECT-scan imaging, the patient is given a radioactive isotope that produces a freeze-frame image of the brain. The patient is then sedated and then a scan is made of the freeze-frame.) 2. UCP's mere 20-treatment protocol is not enough to " set " a change in brain tissue. The standard treatment protocol is 40 treatments; therefore, with just 20 treatments, UCP's goal was to not allow any permanent improvement to occur. 3. This goal was verified by UCP's plan to do a 2nd PET 6 months after the last HBOT treatment. Every well-known expert in HBOT for brain-injured children, every MD knew this UCP study was designed to produce failure and went on the record to state their objections: Neubauer, Ken Stoller, Harch, Philip , Pierre Marois, and probably a few more--but Texas housewife and hyperbaric messiah e Creacy endorsed it because she (a) knows nothing about the science behind HBOT ( thought an alignment with UCP would make her famous, and © took UCP's Murray Goldstein with her to meet with (at the time) US HHS Secretary Tommy . For the record, " Keeping the Palsy in Cerebral Palsy " was published in " Pressure Point, " the official newsletter of the International Hyperbaric Association (IHA). You might remember that Tom Fox has claimed fatherhood of two cerebral-palsied children. Tom Fox also claims IHA exists solely to sell portable hyperbaric chambers. That same issue of Pressure Point was sent to Volcker, former chairman of the United States Federal Reserve and then-chairman of UCP's Research and Educational Foundation. The UCP study mysteriously and quietly ended about a week later, Murray Goldstein was fired, UCP removed all references to HBOT from their web site, and I haven't had much faith in e Creacy ever since because she refused to apologize and refused to admit her stupid error. Her personal desire for fame and personal stupidity had every potential to directly affect my child's quality of life and your child's quality of life. Now she is in the process of receiving a small business administration grant to start a hyperbaric treatment center; however, the grant hinges on a certain degree of guaranteed business. That business comes from her participation in a US Army " study " with a UHMS-endorsed and mandated minimum treatment protocol of 2 ATA and above, which is a pressure protocol that is well-known to produce failure in the recovery from brain-injury. This was recently documented again by Dr Harch, MD at the HBOT2008 symposium--which e Creacy attended. Now, what you s and other discontents who seek LetsJustPostHappyPosts fail to realize is there are idiots out there like e Creacy and Tom Fox, and in the best interests of your children and mine, you should pay attention to this stuff from some of the people who have been blazing this trail longer than you have. Otherwise you could be burned. As could your children. It might seem personal. If it threatens my child, then that's personal to me. Mr. lost his child, and it could be argued that e Creacy is partly to blame. He was seeking direct medical intervention via Medicaid reimbursement for his daughter, and Texas Medicaid would have had to pay if evidence were produced at the hearing that could have demonstrated Texas had been paying for off-label HBOT. e Creacy had that evidence, but the s couldn't enter it because it would have been hearsay (inadmissible) if it came from them, but e Creacy, president of AA Hyperbaric AWARENESS refused to make 's judge AWARE of the fact that Texas Medicaid was paying for off-label HBOT for her husband Bill Creacy. Freels 2948 Windfield Circle Tucker, GA 30084-6714 770-491-6776 (phone) 404-725-4520 (cell) 815-366-7962 (fax) mailto:david@... <david@...> fearlessparents/ http://www. .com http://www.davidfreels.com -- Freels 2948 Windfield Circle Tucker, GA 30084-6714 404-725-4520 (cell) 770-491-6776 (phone) 815-366-7962 (fax) mailto:DFwrites@... http://www.freelanceforum.org/df Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 11, 2008 Report Share Posted August 11, 2008 Dear , Thank you VERY MUCH for taking the time to explain what all the fuss is about. I really appreciate your post, and I am in awe of your dedication in starting and supporting this email forum. The proposed Creacy study sounds calamitous; is there any hope of heading them off before this craziness goes forward? I know a neurologist who is currently working at a VA clinic in Austin, TX, and was formerly an NIH researcher. I've tried in the past to talk him into doing research on the use of HBOT for TBI victims at the Austin VA, but it is not something he is familiar with, and I didn't get much of a reception. As a physician with a year of training in Occupational Medicine, in addition to being a board certified Family Practice physician, I've thought about the possibility of starting a hyperbaric oxygen clinic in Duluth, where I live. The community is economically depressed, and would benefit from any new business venture that could be brought in. It is also a port town, and it would be good to have hyperbaric treatment available for the Coast Guard, which operates on Lake Superior, and might have a need for treatment for an occasional diver with the bends. Maybe I can get some assistance by contacting my congressman, Jim Oberstar, who is now chairman of the House Transportation Committee, about this. We've talked briefly about TBI, and I know he is concerned about returning veterans with TBI and of course other health problems. My own particular area of concern is of course being able to provide hyperbaric oxygen treatment for the many TBI victims who live in the area, as well as other people who could benefit from HBOT, such as stroke victims, those with other anoxic injuries, or conditions such as autism which appear to benefit from HBOT. Best regards, > From: Freels <dfwrites@...> > Subject: [ ] Conflicts. > medicaid > Date: Monday, August 11, 2008, 2:08 PM > The purpose of the " bickering " that has occurred > in recent days regarding > AAHA/TomFox/e Creacy has been to shed light on a very, > very dark, black > corner of the world of off-label HBOT. > > As for the two s who recently posted the suggestion of > starting another > group, go ahead. As for the others who > chimed in advocating > the same, you are more than welcome, and I hope you can do > this better than > me. If Medicaid reimbursement is what you really seek, by > all means, please > pursue it. If you get stuck, call me. 404-725-4520. > That's my cell number. > Call me I'll be glad to help in any way I can. > > There may be posts about activities and stated positions of > individual > persons, but they are not " personal attacks. " > > I'll explain with some background. > > I have been a parent advocate and an attempted force for > change in the fight > for accessing off-label HBOT since 1999. I have never > sought fame or fortune > in this venture, and my position(s) have never changed. I > have been > consistent throughout. I'm just another father of a > brain-injured child. > > Prior to recent events, I have tired of Tom Fox's > personal vendetta against > Oxyhealth and have repeatedly asked him to file formal > complaints with the > FDA. In March, I demanded such filings before Mr. Fox can > post here again. > That's been almost six months, and to my knowledge he > hasn't filed a > complaint. > > Why not? If he really has safety concerns, then why not > file a complaint? > > In the interim, I received by fax, documentation (a > receipt) signed by Mr > Fox where he had personally altered a portable chamber and > made it in direct > violation of ASME-PVHO and FDA. > > While I personally think it was a stupid decision of Mr Fox > to (a) make the > alterations, and ( create ASME-PVHO and FDA safety > violations, and then > © add his signature to the document verifying all of the > above, I also > believe it's an indicator of his own personal > arrogance. > > Prior to my understanding and disclosure that AAHA is a > fraudulent 501c3, I > had one public conflict with Mrs. Creacy, and that was her > public > endorsement of an announced " study " produced and > financed by United Cerebral > Palsy at which the protocol was to be a PET scan (not SPECT > scan), 20 HBOT > treatments, and then a second PET scan 6 months later. This > was in (I think) > 2003. > > In 2003, I publicly expressed my opinions and publicly > exposed the danger of > UCP's-eCreacy-endorsed study because UCP is > regarded as an expert on > all things having to do with cerebral palsy. > > I state this opinion based on personal experience. When we > first sought > legal representation in 1999 for our case, > we went to > Georgia's Protection and Advocacy Office > (http://www.thegao.org), and they > refused to represent us based on the false statements about > HBOT that UCP > had published on UCP's web site. > > In our very first court appearance, the > Georgia > Administrative Law Judge (ALJ) came within a hair of > dismissing our case > because 90% of the Georgia Attorney General's first > brief was comprised of > falsehoods about HBOT published on the UCP web site. > > I learned in 1999 that United Cerebral Palsy has a lot of > power and > authority regarding issues of care of children with > cerebral palsy. > Therefore, it's important, it's critical for my > child's health that UCP's > information is accurate. > > Because UCP refused to revise it's position on HBOT, > and in fact was seeking > to produce the study wholly designed and intended to > produce a negative > result regarding HBOT efficacy in cerebral palsy, an > article was published > clarifying UCP's intentions regarding this > eCreacy-endorsed study. See > " Keeping the Palsy in Cerebral Palsy. " > http://ihausa.org/newsletters/newsletter/pdf/2004_Oct_Nov.pdf > > Here's how the study would have produced the negative > result: > > 1. PET scans are live scans that measure brain metabolism, > i.e., brain > function, which means the patient cannot be sedated because > the brain would > be sedated and an accurate metabolism measurement > couldn't be obtained in a > sedated state. Therefore the patient had to lie perfectly > still during the > 30+ minute scan. > > This would be impossible for a cerebral palsy child who > cannot control > his/her body. > > (On the other hand, in SPECT-scan imaging, the patient is > given a > radioactive isotope that produces a freeze-frame image of > the brain. The > patient is then sedated and then a scan is made of the > freeze-frame.) > > 2. UCP's mere 20-treatment protocol is not enough to > " set " a change in brain > tissue. The standard treatment protocol is 40 treatments; > therefore, with > just 20 treatments, UCP's goal was to not allow any > permanent improvement to > occur. > > 3. This goal was verified by UCP's plan to do a 2nd PET > 6 months after the > last HBOT treatment. > > Every well-known expert in HBOT for brain-injured children, > every MD knew > this UCP study was designed to produce failure and went on > the record to > state their objections: Neubauer, Ken Stoller, > Harch, Philip > , Pierre Marois, and probably a few more--but Texas > housewife and > hyperbaric messiah e Creacy endorsed it because she > (a) knows nothing > about the science behind HBOT ( thought an alignment with > UCP would make > her famous, and © took UCP's Murray Goldstein with > her to meet with (at > the time) US HHS Secretary Tommy . > > For the record, " Keeping the Palsy in Cerebral > Palsy " was published in > " Pressure Point, " the official newsletter of the > International Hyperbaric > Association (IHA). You might remember that Tom Fox has > claimed fatherhood of > two cerebral-palsied children. Tom Fox also claims IHA > exists solely to sell > portable hyperbaric chambers. > > That same issue of Pressure Point was sent to Volcker, > former chairman > of the United States Federal Reserve and then-chairman of > UCP's Research and > Educational Foundation. The UCP study mysteriously and > quietly ended about a > week later, Murray Goldstein was fired, UCP removed all > references to HBOT > from their web site, and I haven't had much faith in > e Creacy ever > since because she refused to apologize and refused to admit > her stupid > error. > > Her personal desire for fame and personal stupidity had > every potential to > directly affect my child's quality of life and your > child's quality of life. > > Now she is in the process of receiving a small business > administration grant > to start a hyperbaric treatment center; however, the grant > hinges on a > certain degree of guaranteed business. That business comes > from her > participation in a US Army " study " with a > UHMS-endorsed and mandated minimum > treatment protocol of 2 ATA and above, which is a pressure > protocol that is > well-known to produce failure in the recovery from > brain-injury. > > This was recently documented again by Dr Harch, MD at > the HBOT2008 > symposium--which e Creacy attended. > > Now, what you s and other discontents who seek > LetsJustPostHappyPosts > fail to realize is there are idiots out there like e > Creacy and Tom > Fox, and in the best interests of your children and mine, > you should pay > attention to this stuff from some of the people who have > been blazing this > trail longer than you have. > > Otherwise you could be burned. > > As could your children. > > It might seem personal. If it threatens my child, then > that's personal to > me. > > Mr. lost his child, and it could be argued that > e Creacy is > partly to blame. He was seeking direct medical intervention > via Medicaid > reimbursement for his daughter, and Texas Medicaid would > have had to pay if > evidence were produced at the hearing that could have > demonstrated Texas had > been paying for off-label HBOT. e Creacy had that > evidence, but the > s couldn't enter it because it would have been > hearsay (inadmissible) > if it came from them, but e Creacy, president of AA > Hyperbaric > AWARENESS refused to make 's judge AWARE of > the fact that Texas > Medicaid was paying for off-label HBOT for her husband Bill > Creacy. > > > > > Freels > 2948 Windfield Circle > Tucker, GA 30084-6714 > 770-491-6776 (phone) > 404-725-4520 (cell) > 815-366-7962 (fax) > > mailto:david@... <david@...> > > fearlessparents/ > > http://www. .com > > http://www.davidfreels.com > > > > > > > > -- > Freels > 2948 Windfield Circle > Tucker, GA 30084-6714 > 404-725-4520 (cell) > 770-491-6776 (phone) > 815-366-7962 (fax) > mailto:DFwrites@... > > http://www.freelanceforum.org/df > > > Quote Link to comment Share on other sites More sharing options...
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