Myalgic Encephalomyelitis is clear to see in the blood

Oliver3

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I love this cement solid house I live in now. Very little opportunity to become moldified.

You heard of HSP? Highly Sensitive Person ...theory. It's a hypothesis, with some data and some supporting observational studies in species that are NOT humans. About 18% of the population, with this different wiring system.

I think there is alot to the theory.
We are definitely not all created equally, that's for sure
 

Rufous McKinney

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The rcccx theory even postulated that sensitive s are sexually attracted to each other to ensure sensitivity is maintained.
My husband is only a little bit sensitive. My daughter ended up not very at all.

She is quite resilient, and I'm grateful for that. Resilient maybe the wrong term.
 

Oliver3

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I have 18 microbuses, in my stash. Waiting for the day I feel a tad better. Been waiting for a while now.

I am pretty sure I dont consider these capsules a micro dose. I'd be taking, oh, a tiny tiny tiny BIT.
I'm too scared to take it!
You mention perrin.
I met him.
He lives over the other side of what we call the pennines.
The thing that really helps me to this day is the main perrin squeeze around the bridge of the nose.
It really helps in times of crisis.
I recieved weekly perrin massages from one of his trained therapists. But only thr bridge of the nose thing makes a difference.
Perrin said I had the worst spine he'd ever seen.
Which was nice to learn!!
 

Oliver3

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My husband is only a little bit sensitive. My daughter ended up not very at all.

She is quite resilient, and I'm grateful for that. Resilient maybe the wrong term.
I think resilient is fine.
And that's the thing some of these things are mutations..others skip generations.
But I definitely am also attracted just to friends who have the same sensibilities.
It's a general pattern I think but not a hard abd fast rule..but for example you talking about the microwave. I get that! But a lot of people would look at you wierd. They're just better insulated!
 

Oliver3

Senior Member
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1,141
My husband is only a little bit sensitive. My daughter ended up not very at all.

She is quite resilient, and I'm grateful for that. Resilient maybe the wrong term.
Aspirin has also helped ease the pressure. But some people's vascular integrity in my.e. isn't string enough to handle it
 

Rufous McKinney

Senior Member
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14,694
I'm too scared to take it!
thats the problem. I'd probably go with opening a capsule, and taking .0001 gram, and then add half a Xanax for good measure, so I don't f-ing panic. Then quick, maybe drink a beer.
Perrin said I had the worst spine he'd ever seen.
Really? Thats sounds difficult.

My spinal defects can be observed in a photograph taken when I was two.

Also I"m standing on my ankles (and had one slightly clubbed foot) in another photo.

then you find out hte spinal stuff worsens over time.

there's the German birth defect, I have that one too.

Then you hit junior high and the teasing starts.

oh GOSH help us!!!!!!!!!!!!!!!!!
 

Wishful

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The suramin trials proved naviauxs theory ...so you understand????
https://www.reuters.com/article/fact-check/suramin-is-not-a-proven-cure-for-autism-idUSL1N3521OO/

No, I haven't read every paper about the trial in humans. The above link doesn't encourage me to do so. Furthermore, the trial was for ASD symptoms, which isn't proof of the theory applying to ME. I consider it worthwhile research, but I don't see any reason to consider it a more likely pathway to solving ME than many others. In short, I just haven't seen anything about that research--or really any other, so far--to get me excited about. The one posted today about sphingolipid enzymes is interesting, but I don't feel like jumping with excitement about that either. I'll wait for further developments about that.
 

Oliver3

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1,141
https://www.reuters.com/article/fact-check/suramin-is-not-a-proven-cure-for-autism-idUSL1N3521OO/

No, I haven't read every paper about the trial in humans. The above link doesn't encourage me to do so. Furthermore, the trial was for ASD symptoms, which isn't proof of the theory applying to ME. I consider it worthwhile research, but I don't see any reason to consider it a more likely pathway to solving ME than many others. In short, I just haven't seen anything about that research--or really any other, so far--to get me excited about. The one posted today about sphingolipid enzymes is interesting, but I don't feel like jumping with excitement about that either. I'll wait for further developments about that.
You have zero and I mean zero ideas.

Ah the good old reuters fact check eh? I remember those from the pandemic

Perhaps while you wait, refrain from posting that you think all research people post is rubbish without any integrity or even consideration to read things or look further into it .

That's all I have to say to you now
 
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You have zero and I mean zero ideas.
That's all I have to say to you now
The one posted today about sphingolipid enzymes is interesting, but I don't feel like jumping with excitement about that either. I'll wait for further developments about that.
You guys are like Grumpy Old Men. I have been getting many good laughs watching you guys carry on!
 

Wishful

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I have been getting many good laughs watching you guys carry on!
Me too. Not grumpy about it at all. I don't care whether other people have other opinions about research. Tests of theories will be carried out, and will succeed or fail regardless of who believes what.
 

Wishful

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I also posted about how engineers might be helpful as part of scientific research teams on S4ME, and someone posted this link: //www.cell.com/cancer-cell/fulltext/S1535-6108%2802%2900133-2

An interesting example of different ways of thinking about problems. Neither perspective is wrong, they're just different. I'm guessing that most arguments involving different perspectives don't result in one side changing their mind.
 

Oliver3

Senior Member
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1,141
Somebody say smthg ? Christ on a bike...some people have an amazing compulsion to say nothing over and over without even a research paper or any evidence to their ' idea'
Engineers are involved in m.e. it's not even a new idea. People are drawn in from many fields.
What's amazing is the no shame faced ignorance and enjoyment of their ignorance and trolling. Talk about ego.
 
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Oliver3

Senior Member
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1,141
My six year old grandaugter: her elbows bend backwards and backward sideways. This freaks out her Grandmother (thats me).
Sorry rufous. Not meaning to freak you out.
It freaks ne out to be honest because it's such a basic part of our well being.
Dint forget tgo, just because she's hypermobile, doesn't mean it immediately means cfs or anxiety. . I think ive said before Usain bolt has a hypermobile spine.
It depends how the connective tissue is spread throughout the body and brain. That's my belief.

I really think we need to triple down as a community to studying connective tissue.
Sure , there will be other complexities but I truly believe it's the root cause to predispose you to the disease process in m.e.

I think the good thing us regenerative medicine and specifically crispr will restore any issues your granddaughter may face ( which are obviously still hypothetical) as well as hopefully us.
What's strange is that heds has no genetic markers yet i believe . But there has to be.
Once crispr has learned how to cure more than single gene diseases and the genes for heds are identified then you're in the business of curing the disease.

Of course, any bridging therapy is totally welcome . And I'm sure we will get them.
Maybe even a functional cure.

So sorry to worry you rufous. But I think tgeres reason to hope too.
 

Oliver3

Senior Member
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1,141
I
My six year old grandaugter: her elbows bend backwards and backward sideways. This freaks out her Grandmother (thats me).
If you noticed on the piece I posted about people's experience with hypermobility. They all complain of low grade inflammation in the body.
Same with these biomarkers.
But there's snthg about m.e. that creates an energy shift issue. Personally I think it's a body with connective tissue problems going over the event horizon , past the metabolic switch that changes how we process energy
 

Rufous McKinney

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14,694
Sorry rufous. Not meaning to freak you out.
already freaked when I saw both granddaughters have the potential for tethered cord.

My daughter is OK, physically. Her version of life does not seem to come with this crap. She has a bit of asthma. My plan is to not be irrational about it, but aware of these things and lets hope progress can be made in a better understanding.

well, the six year old goes to therapy........over anger management and anxiety issues.
heds has no genetic markers yet i believe
I need to go find the genetics file .
 
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