ana_22 Posted September 27, 2008 Report Share Posted September 27, 2008 Just thought I would share this info. Looks like the yellow wiggle has set up a research fund with the Baker institute. Good news!!! http://www.bakeridi.edu.au/support/greg_page_fund/http://www.gregpage.com/I only wish more research was being done!EDITED to add this:i just found a link to a recent interview he did! http://blogs.abc.net.au/grandstand/2008/01...rview-greg.htmli just listened to the interview.... very interesting!!! Looks like he has made somewhat of a recovery, or is at least doing better. An interesting theory about the cause of OI for him and when the specialist thinks he will recover! Quote Link to comment Share on other sites More sharing options...
Sunfish Posted September 27, 2008 Report Share Posted September 27, 2008 it's great to see that he's making use of his celebrity to give back, and a quick perusal of the links is encouraging as the posted info seems to be accurate and pretty thorough as far as presenting dysautonomia to those who wouldn't otherwise be familiar with it.thanks for sharing... melissa Quote Link to comment Share on other sites More sharing options...
firewatcher Posted September 29, 2008 Report Share Posted September 29, 2008 Can we start now and contact Mr. Page about next year's chronic illness week? If he could do interviews or something or we could get a reporter to start now on a story. Does anyone know CNN's Dr. Guptah? We could organize a "faint in" since none of us can picket! Quote Link to comment Share on other sites More sharing options...
yogini Posted September 29, 2008 Report Share Posted September 29, 2008 Cool website. I looked for an email address where we could contact him, but didn't see one. I also wish he had included DINET in his list of references - he has NDRF, but he should add Dinet too. Quote Link to comment Share on other sites More sharing options...
ana_22 Posted September 23, 2009 Author Report Share Posted September 23, 2009 Greg page ws recently on australian TV... the video can be seen here. looks like he is doing well if he is able to perform a couple of concerts!good news and gives hopehttp://video.msn.com/?mkt=en-au&brand=...sn&tab=m164the video is on the bottom left corner Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted September 23, 2009 Report Share Posted September 23, 2009 Yeah this one has been up here a few times. As far as I am aware the Baker Institute is not currently studying POTS or planning to do so again in the near future. There current areas of interest appear to be other forms of orthostatic intolerance.the most current and impressive work on POTS in the last few years has come out of Dr Stewart et al's group. Quote Link to comment Share on other sites More sharing options...
ana_22 Posted September 23, 2009 Author Report Share Posted September 23, 2009 Do you know what type of OI they are studying?i know a cardio Dr in Melb is doing research into OI and panic.the video i posted is a new one it was a current affair last week....i just happened to have it on channel 9 last week and saw it...he looks really well.rama i think there is a fundraising event called cocktails for a cause coming up really soon at the alfred are you going by any chance? im not (due to health).....just wondering if you are! Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted September 23, 2009 Report Share Posted September 23, 2009 Last I heard they were studying chronic low blood pressure and NCS. Their work on POTS was published in 2006 but in a fairly diluted form. I know that Dr Corcoran is studying POTS and Panic disorder in an attempt to demonstrate potentially that they are both caused by norepinephrine transporter gene hypermethylation. For mine Id say that POTS itself results in a sympathetic dominant state that would trigger anxiety or hypervigilance anyway and make those prone to panic symptomatic. I think the work currently being done by the guys at NYMC is by far the most progressive of the recent work on POTS. Hypermethylation may play a role in some POTS patients but its doubtful that it is all. And its not even clear whether it is the cause or consequence of POTS. The methylation levels found didnt correlate with symptoms or with norepinephrine levels which is confusing. Quote Link to comment Share on other sites More sharing options...
ana_22 Posted September 23, 2009 Author Report Share Posted September 23, 2009 i dont really understand all the scientific things behind POTS....i know im going to have to research a bit more....i wish i had paid attention in science now....i was more of a arts/design student.BUT does Hypermethylation have anything to do with b12 and stuff that they have been researching in CFS. like the yasko protocal and dr demeeiliers protocol?or am i totally on the wrong track? Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted September 23, 2009 Report Share Posted September 23, 2009 No hypermethylation relates to genes having their transcription turned on and off - its called epigenetics. Whereas that methylation cycle stuff is more to do with some theory about toxin metabolism somehow effecting the ANS.One is proven science, although not proven in its relationship to POTS yet - the other is on the fringes of pseudo science and based on very flimsy research and a lot of opinion. LOL. Epigenetics is involved in cancer and tumor promotion. We have genes that supress tumor genesis that seem to get turned off due to promoter hypermethylation for reasons that are currently unclear but that result in tumors and cancers. if you do a search on hypermethylation all the hits will be about cancer or gastritis. Quote Link to comment Share on other sites More sharing options...
ana_22 Posted September 23, 2009 Author Report Share Posted September 23, 2009 thanks for that watered down version! so basically something has turned off the gene that controls ans? ill have to look into it more. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted September 23, 2009 Report Share Posted September 23, 2009 Its a system that the body normally uses to turn genes on and off. In some cancers it seems to go out of whack and the theory was that it was involved in silencing the gene that controls the protein that collects norepinephrine out of the synpatic cleft so NE was staying for longer, increasing transduction and peripheral resistance and causing cerebral vasospams or vasoconstriction leading to POTS. Its a pretty tidy theory actually but its not yet proven - which means it hasnt translated at all to any current treatment advances. Quote Link to comment Share on other sites More sharing options...
ana_22 Posted September 23, 2009 Author Report Share Posted September 23, 2009 are they close to proving it with research? can ou measure NE levels in your body easily? or is it a complicated process? Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted September 23, 2009 Report Share Posted September 23, 2009 Not really. And its certainly not accepted by some other research bodies so its hard to say who is on the right path. I dont think its that clean cut - some of the research bodies that have been doing long and detailed long term studies of POTS have found a large variety of presentations and not just one or two. NE is easily to study but in many patients in POTS its not actually elevated despite their being signs of excess NE levels. In some patients it is potentiated through other mechanisms - ie normal levels but potentiated by reduced neuronal nitric oxide as an example. The NO example is a good example of a group of patients who have been properly studies and proven conclusions made - these patients have genetic issues that result in reduced catabolisim of angiotensin II. Quote Link to comment Share on other sites More sharing options...
kayjay Posted September 23, 2009 Report Share Posted September 23, 2009 I find it a bit troubling that for 5 months I tried and failed to get on the Ndrf website. Of course this one is better but it bothers me that even my dr. mentioned it and I can't get on!!! Dinet needs some more publicity! Quote Link to comment Share on other sites More sharing options...
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