Pots Makes The National News In Australia

[ramakentesh]

The research being conducted at the Baker Institute in melbourne on the cause of POTS and possible new treatment iniatives was on the Channell Nine news tonight in melbourne Australia.

They had a POTS patient on talking about how POTS had effected his life, etc. Then they had Professor Esler talking about how they had found that all POTS patients tested had normal Norepinephrine transporter genes, but hypermethylated gene promoters which had effectively turned the gene off.

They took arm vein biospies of all the POTS patients tested (including myself) and found that none of us had ANY NET transporter protein on our receptors compared to normal levels in controls.

They also tested for the methylase and an indicator to this and found very high levels in POTS patients and none in normal patients.

lastly, they found that haf of the POTS patients tested had 100% methylation to their NET gene promoters.

They contend that this is the MAJOR cause of POTS and they are endevouring to have this study published in the New England Journal of Medicine.

Future treatments will focus on de-methylating the gene or replacing a normal NET gene activity in our bodies. The future is bright.

[futurehope]

I can barely contain my enthusiasm. I hope they find something to help sooner rather than later. (I'm 55 YO) I'll be the first to celebrate.

It would be great if they could figure out what caused this as well to spare other people from this.

Thanks for sharing.

P.S. I'm convinced that a 4 month course of Remeron put me "over the top" in terms of POTS symptoms. Before the Remeron, I was a functioning person. After, a disabled person. Remeron is an anti-depressant given to me to help me sleep. What a mistake.

[Dizzy Dame]

Oh how exciting! I remember you, or someone posting on this study earlier in the year. I can't wait to read it when it comes out!!!

I've always had faith that one day POTS would be curable, not just treatable. Now it looks as though that day may come sooner rather than later.

[Guest danielvasel]

that?s the best news ever!!

i just remember getting this excited when brazil won the world cup in 1994(soccer)

can you do me(us) a favor? please keep us posted.... and send us some internet links about the study...

"the future is bright"

i hope so!!

[corina]

that is real great news. please keep us posted. i surely will travel across the ocean when they're ready to treat patients!!!

corina

[KellyErnst]

I've always wanted to go to Australie anyways. Now I have a really good reason to go - thanks for sharing this wonderful news and as others have said keep us posted on any progress on this study.

Kel

[dano2718]

Thanks for the info! And how neat that you were a part of the research!

I suspect a lot of us here have NE neuronal differences, but that there are many different flavors of NE dysregulation for each of us. One may have defficient transport gene, one may have too few presynaptic auto-receptors, and many have just a bad mixture of several otherwise "normal" genes.

One common theory of "disorder" type illnesses is a handful of otherwise normal genes with enough loss (or gain) of function that, when added up together, tips the balance into an unhealthy condition. So it may not be just one gene causing a person to have POTS. I'm really hopeful that when genetic research tools get more advanced and widespread, the common genetic themes will emerge for those of us together in POTS land .

(I already "know" I have inherited my condition from my old man).

[Lulu]

wow!! excellent!!! hope springs eternal!!!

keep us posted, please! and thanks for sharing

[SunsetParadise49]

wow! That's so great!

[MightyMouse]

I don't want to rain on the parade here--but the methylation theory is only likely to pan out for some patients with ANS disturbance. For folks like me, with EDS, it's unlikely to be the root cause and therefore this particular line of research is unlikely to result in a cure for EDS - linked cases of ans dysfunction.

That being said, it does sound interesting and would be even moreso should the studies be done on a larger scale, with a broader population of verified POTS patients.

Nina

[Jersey Girl]

SO INTERESTING! Don't you just love the internet where we can share news with our neighbors all over the world? I am hopeful that something will come of this. Martha

[lthomas521]

The news about this study has been buoying my spirits since November, when Ramakentesh first mentioned it. I ran it past a friend of mine, a psychiatrist who works in antidepressant research and who had known me when I was very very sick from POTS. I asked him what would happen to someone who had no norepinephrine reuptake. He said, "How could someone live like that?!?" I said, "Not well, evidently." He said, "Gee, it would be as if you had taken a massive overdose of antidepressant." I said, "Well, that would account for my habitual cheerfulness and my high threshold of pain, wouldn't it." I told him that I was looking forward to the results being published in NEJM. He asked how that publication would help me. I told him that I would buy a copy of the issue, take it to my doctors' appointments with me, and the next time one of them told me that I was "depressed" or that it was "all in my mind" or that I was "just looking for attention," I'd roll the journal up into a baton and use it to swat the ignoramus on the snout, because that is evidently the only way that people like that are capable of learning from published peer-reviewed medical literature. Just kidding. In reality, I'll beg them to read it, try to reason with them as if they were rational adults, and then grind my teeth in frustration.

[dano2718]

the next time one of them told me that I was "depressed" or that it was "all in my mind" or that I was "just looking for attention," I'd roll the journal up into a baton and use it to swat the ignoramus on the snout

I think psychiatry has been getting a LITTLE more mature as a science, but still belongs in the laboratory, not clinical practice. For all those years I got diagnosed with not enough serotonin, or dopamine, er... Norepinephrine, er "treatment resistant depresssion", maybe you're bi-polar.

Come to find out that people may have too much re-uptake inhibition causing their symptoms, thus adding a reuptake inhibitor doesn't really help. I see now that Pharma has adapted to new research and makes the claim that SSNRI's no longer "increase " the levels of these chemicals in the brain, now they magically "help regulate" neurotransmitters..

Oh Yvie!

[DSM3KIDZ]

Thanks for the update. I'm excited for any and all advances that they come up with and hopefully someday we'll all get our lives back!!!

Dayna

[michiganjan]

I believe I think a bit like Nina on this topic. That there must be various causes. However, I am confused with the EDS connection. While I definitely am hypermobile and most likely have the collegen defect, and while my blood does pool in my legs, I tried hanging out with the EDS people for awhile, and among the hypermobile types there, POTS does not seem to be prevalent. There seem to be many hypermobiles out there without any POTS. And I can't find anything about POTS among the EDS organizations. So sometimes, I think it must be a multi-determined thing., not strictly an EDS thing. Perhaps some form of POTS can be caused by the collegen defect + the NET problem?

Ramakentesh, has there ever been any mention of hypermobility due to a collegen defect by Dr. Esler?

[desiree942]

I find this study of great interest but I don't "get it" entirely ...would someone with a better grasp mind translating the info into a simplified version? Like POTS for Dummies!

On the subject of EDS, I have very slight hypermobility but the way Dr. Grubb explained it to me I thought hypermobility created a predisposition to POTS due to poor vasoconstriction/blood pooling but it did not have to be the cause. My cause is believed to be post viral but having hypermobility was the 1-2 punch, it probably pushed me over the edge.