Ken Lassesen's comments on XMRV

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[QUOTE:Marylib]Yes, it is ironic....many of us wish we just had back the money we have spent on treatments so we could afford to hire someone to do the mountains of laundry or clean the grungy house! Or hire someoene to take us to a sunny beach now and then...[/QUOTE]

hi marylib - i sooooooo agree with this one!

Do love hearing from ya'all about anyone who's gotten any degree better - especially enough to be able to work to some extent. It's all so idiopathic - pin the tail on the donkey - or pinata. Just imagine - we may end up soon having a clear way to treat ME/CFS!!!!:D Even the glimmer of a possibility is earth-shattering for me. Have tried to make the best of this very small world, but sure would be lovely to revisit the other 90% or so of life.
 

Dreambirdie

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When you can't go out, go in. There's a whole world in there. It's very cool.
I know that world. ;):):) It is BIGGGG and spacious.

I also know some of the shape-shifting crazy beliefs that prevent me from being there, and that big ogre of resistance that blocks the path in. :)mad: no no no, I don't WANT TO FEEL THAT!)

When I get really stuck, I always have to ask myself the same questions: What belief is DRIVING me now? and... Is this true? Usually, the beliefs are remarkably ignorant, and totally convinced of their rightness. But they are no match for the truth, next to which they lose their swagger very quickly. And sometimes, they sound so ridiculous, that I laugh out loud. "I was believing THAT! I was defining myself according to THAT!" Wow, what a liberation the truth can bring.
 

MEKoan

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I know I got us a little OT here :eek:

But, since we're already OT :)

That sense of peaceful, limitless space is what I most enjoy about meditation. It's very soothing, very restful and allows one to develop a way of being that is spacious -- thoughts are not rammed up against each other. I think the very first benefit of meditation is understanding that there can be space around thoughts which allows one to respond to them and not always to simply react.

I have found this most useful in dealing with ME.

The Buddha said: When you realize how perfect everything is, you will throw back your head and laugh at the sky.
 

MEKoan

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I knew you'd like that, Dream. I was reminded of it because of what you wrote about your own reaction to your thoughts.

I, too, love the Buddha. I love the fact he cracked suffering because he suffered. I love the fact that he was moved to do so because he was overwhelmed and totally neurotic. I love that he said, repeatedly: don't believe me, or anyone else for that matter, try it for yourself.

:D
 
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anxious drivenness

"Anxious drivenness."

THIS IS SOOOOOO IMPORTANT, it deserves a thread of it's own.

Hi Dannybex (and all others anxiously driven to exceed limits and fall back into the well just when they were partway up the side and could see the sky)

Let's start a new thread on this. Let's take a poll or two. Let's share pacing strategies. Now that we hear that the XMRV virus has cortisol receptors and cortisol increases its replication rate, we have scientific confirmation of what we have really known but keep ignoring. Maybe we can help each other deal with this prime component of our condition. Breathe (to quote Koan).
 

Dreambirdie

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Let's start a new thread on this. Let's take a poll or two. Let's share pacing strategies. Now that we hear that the XMRV virus has cortisol receptors and cortisol increases its replication rate, we have scientific confirmation of what we have really known but keep ignoring. Maybe we can help each other deal with this prime component of our condition. Breathe (to quote Koan).
YES YES and YES. Go for it!
 

dannybex

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Where best to start it...

I'm all for starting a new thread, with a poll too (keeping in mind that 'stressors' come in many forms), but where do you think is the best place?

Here in the XMRV section?

Or in the Mind/Body section (w/comments re the XMRV connection)?

I tend to favor the latter, because stress affects all disease, whether we turn out to have XMRV or not (or active infections or XMRV antibodies)...plus, we would naturally be bringing up a lot of different mind/body techniques (meditation, Gupta, EFT, Energy Medicine, etc..)

What do you all think?

I'll be baaaaaaaaack. I need to DE-STRESS. We all do. :)

d.
 

MEKoan

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Or in the Mind/Body section (w/comments re the XMRV connection)?

I tend to favor the latter, because stress affects all disease, whether we turn out to have XMRV or not (or active infections or XMRV antibodies)...plus, we would naturally be bringing up a lot of different mind/body techniques (meditation, Gupta, EFT, Energy Medicine, etc..)

What do you all think?
I think that's a great idea.

Go for it!

and

Breathe
:p
 
J

jprints

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Robin

"Don't give up. No matter where you are, there is always hope."

I like what you said, Robin. Especially your last sentence has a lot of power - Joy

PS still working on incorporating the quotes in the reply - time to read the directions!:eek:
 

Wayne

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XMRV Cortisol Receptors

Now that we hear that the XMRV virus has cortisol receptors and cortisol increases its replication rate, we have scientific confirmation of what we have really known but keep ignoring. Maybe we can help each other deal with this prime component of our condition. Breathe (to quote Koan).
Hi Ruth, Hi All,

I was wondering if this aspect (XMRV cortisol receptors) has been discussed in depth anywhere on this board. I take low-dose Cortef (cortisol) for severe adrenal insufficiency and would like to get a sense of whether these XMRV receptors might be a significant factor me.

I would also wonder if it might be an individual thing. I've posted fairly extensively on my on successful low-dose cortisol supplementation, but have heard from others, even those with severe adrenal insufficiency, that taking even the smallest amount of prescription cortisol gives them extremely negative reactions.

Anyway, if anybody knows of a thread with more information, I would appreciate if you could steer me in that direction. -- Thanks.

Wayne
 

Wayne

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This LINK will take you to Ken Lassesen's "my story" which he wrote in 2014 about recovering from CFS three times. Many interesting details, especially on gut flora.