Amygdala Re-Training

[Sam_ci]

I am starting this 6 mo program. It is for CFS/Fibromialgia, but I belief POTS fits into it as well. http://www.guptaprogramme.com/html/contact.asp.

Also, I am starting BSFF, as I believe it will complement, the amygdala re-training.

[Sam_ci]

Here is the link to free 3 hours sessions. He recommends to start with session #2. Also, there is a session for MCS, multiple chemical sensitivity, which I happen to have . I have not watched it yet.

[Sam_ci]

[Sam_ci]

After reading his "HOW THE CFS SYMPTOMS ARE CREATED"(it was emailed to me) it all makes sense to me, I even cried reading it, for it is describing exactly what I am going through on a daily basis. * An overview of The Amygdala Hypothesis a 'vicious cycle' that, once triggered by severe stressors in people with certain risk factors can perpetuate neurological overstimulation, physiological dysfunction, and many physical symptoms.

I exhausted all other options, which I was doing on my own.

[jangle]

CFS is associated with autoantibodies from the ritixumab trials. POTS is associated with ACHR autoantibodies, and probably others as well as NET dysfunction. Neither of these things have an origin of the CNS.

I hope it works to help your symptoms though.

[foggy_brain]

hi Jangle, if you meant to imply with your quotes that a CNS origin is unlikely of whatever Sam_ci (or the rest of us) suffer from you're making mistakes in your reasoning, I'd most respectfully dare to venture:

1) CFS/POTS/neurasthenia -- whatever dubious rubber definition we apply to ourselves --- are not one disorder. A large minority of us may be suffering from CNS dysfunction or primary mental dysfunction or psychological dysfunction or whatever and the associations you report would still hold true on the average even if that dysfunction does not relate to the variables you quote.

2) The associations you refer to may easily be plain wrong (that happens to a large, very large, proportion of medical research).

3) And, this is or should be drilled into your head as you learn statistics: correlation is not causation, correlation is not causation, correlation is not causation. So even if POTS or CFS had exactly one pathophysiological explanation, there's nothing in the observations you quote, even if true, that per se precludes a CNS origin and cause.

So I'll vote for giving a CNS a chance.

That being said, I'm by reflex running for the door when I see a phrase like here's my "video explaining the causes of ME, CSF & Fibromyalgia". It's the little word "the" that does it for me. More telling in my opinion is that this doctor's claim to fame is in the journal "Medical Hypothesis", which is not exactly the New England Journal of Medicine. In ten years, this non-seminal work has been cited 20 times, some of them in really dubious publications or in self-references.

But I agree with you, Jangle, that each of us ought to follow what works for us -- yeah, I've been through a few of these alternative programs myself (with no success in my case, even if doctors or Ph.D.s are behind).

[jangle]

Correlation isn't causation but causation has already been established with NET. Blocking NET with reboxetine produces POTS in healthy volunteers and when the reboxetine is metabolized out of the system the POTS also disappears.

It's not about knowing anything with certainty, which is impossible, but rather what's more likely and less likely. Autoantibodies and NET transcription aren't regulated by CNS activity. Blood volume, sympathetic activity, and parasympathetic activity do have connection with CNS activity, but might also arise from a peripheral problem. That would be the only conceivable means of implicating the CNS in POTS that I can think of.

However, more likely to me is the NET transcription defects which might be explicable by autoimmune illness hence the autoantibodies. The studies themselves can only be wrong if there was methodological error, as their findings are data. Given the quality of scientific researchers involved with the studies, I don't think the data is wrong.

[foggy_brain]

The NET example is interesting, Jangle, but it doesn't buttress your claim that POTS can't stem from the CNS. There might be 1000 other such factors that produce POTS in experiments, but none of which cause POTS clinically. And there be one that does cause POTS in the clinic and is part of the CNS. I would think that's really hard to know.

Autoantibodies and NET transcription aren't regulated by CNS activity you say. Look, there could be tens of thousands of unknown pathways in play. Low hanging fruit examples: the CNS helps control temperature, a determinant of the speed of chemical processes and there are glands whose activity is influenced by the CNS and that have immunological effects.

Sam_ci's doctor's hypothesis is probably not a priori a bad one, it's just there seems to be no evidence it actually explains POTS. What the POTS researchers suggest is more probable as you say. I don't have any opinion about the data of the particular studies you mention, but generally there are many ways that well-intentioned and honest researchers may end up publishing wrong or skewed data.

I think most of us patients don't grasp how uncertain medical science is. Well, I should speak for myself perhaps only I was very naive the first couple of years I was ill when I thought there was a lot of substance to CFS and POTS research. Now, I don't think there is, but it's generally not the fault of the researchers, they're working in an extremely difficult area. [Actually, come to think of it, some of the CFS research has been rather scandal plagued...] I hope very much that what's under the umbrella of POTS will be pieced out in better defined parts so that POTS avoids becoming the new CFS. Having more specific subsets would also prevent half-baked explanations to present themselves as the solution to much suffering.

[jangle]

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[issie]

We can sit here and debate the cause of POTS for ages. Fact of the matter ----In the years that I've been studying it ----there is so much conflicting information. I keep hoping that the researchers will get closer to answers and I do believe some of them are. But, there are so few of us with POTS and it would require massive amounts of money to fund the research.

I personally, think, that CNS is involved but so is the Peripheral NS. If the CNS doesn't send the signals to the PNS then there is a break-down in what happens peripherally. It all starts in the brain. Where is the malfunction? Is it at the start of the information out-put, is it in the receiving of the message from the PNS, is it in a lack of response and delivery from the PNS for the desired response? We are so closely connected and the systems have to work in concert with each other or the dance is not fluid - but, rather a bobble of eccentric expression. People who use meds that affect the CNS wouldn't be getting as good results from the meds and it somewhat stabilizing their lives if there wasn't something at play here. I wish it would be a mechanical thing with just an issue of blood vessel function. But, I think it's much more complex then that. It affects so many organs here. We have scientific proof there is some sort of kidney dysfunction. We know our hearts are over compensating with tachycardia for the drops in blood pressure that we get - what's causing that in the first place ---who knows. Is there vascular issues with the valves in the vessels - is there something clogging up the vessels and decreasing blood flow, Is there a malfunction in the neurons of the brain causing miscommunication with the body ---I can go on with a million questions. All of them that could be just as viable as the one before it.

I think we need to look at things like autoimmune dysfunction - problems with genetic defects, and maybe some blood disorders and the causes of them. It seems there are problems with assimilation of some minerals in our bodies and the way they are used. And this can also affect the immune system. There are also channels for the use of these things that may be faulty. Which came first ---autoimmune and auto-antibody issues or is this a result of some genetic mutations that we may or may not can do anything about. The more I study about genetics, nutrition and family connections ----over generations. The more I wonder if we are not predisposed to some of these malfunctions. These mutations can get turned on even before birth in some cases. There are many studies on epigenetics and tweaking of genes. But, are we trying to play "God" with this? Time will tell.

As for the studies that we read and the conclusions we draw from them. I can say for a certainty that whatever information is out there ---one or two words carefully placed will convey the desired message of whomever is writing it. If they are of a certain "opinion" ---no matter what the science shows ---it can be slanted to give the impression desired by the writer. You have to be able to see beyond that. I think that there are many of us able to do this. But, there are also many that will take something at face value and believe whatever they read.

It's good to have interchange of discussion and even difference of opinion ----but, really -----we've got to keep searching and trying to piece this together. I'm just glad that they are finally realizing that not all of us present in the same way and we can't all be treated in the same way. Some of us have very complex, complicated ---compounded things going on. Which one do you treat first and which one will give you more quality of life. If we can get down to the core of the problem and then work out to the peripheral areas --we might get somewhere.

You guys ---keep brain storming. FACT OF THE MATTER ---we're all in this together and we are all searching for the answers and we will all benefit.

Issie