Results of the largest ever study into the Genetics of me/cfs.

[Rufous McKinney]

I loose interest real quick.

the part of our brain that decides its not worth it (the effort).....is acting up. For example, I discover an interesting paper has come out, I'd like to read it. But then the paragraphs (typically the lack of them)......overtakes the sentences. I might read the first and last sentences, and from there, loose more interest in persevering. Thats what this area is: the Perseverance part of our brain.

Dr. Younger described that area...in the latest video on brain inflammation; in the frontal cortex.

 

[Violeta]

How would one go about checking if they have defective variants of the RABGAP1L gene for example.

I've put RABGAP1L into my23andme and it comes up with dozens of RS Markers.

The study doesn't seem to be using RS Markers.

I wonder if it's looking at sequences not on my23andme or I just don't know what to look for.

 

[andyguitar]

Everyone is searching and researching
And none of us know what to check at this point?

I am looking at the BTN 2A2 gene. It's interference with anti CD3 antibody could be part of the puzzle. That might be causing an immune system over reaction. There is a fairly new drug that targets anti CD3 antibody. It's been used to prevent an overactive immune response in Covid 19 infection. Called Foralumab. As this genetic research has found a defect in the immune system I'm thinking along the lines of...... the initial trigger leads to an immune response which due to the genetic defect gets out of control and causes tissue damage. I'd see the Endothelium as a probable site of the damage. Just a thought.

 

[I am sick]

I agree with my symptons I just cant read for hours either , I loose interest real quick.

I agree with my symptons I just cant read for hours either , I loose interest real quick.

Hi
That attachment locked my phone up lol took about 30 minutes to get it going again .
I could see the graph but couldnt escape out of it lol
Its all ok , gave me something to do

 

[I am sick]

the part of our brain that decides its not worth it (the effort).....is acting up. For example, I discover an interesting paper has come out, I'd like to read it. But then the paragraphs (typically the lack of them)......overtakes the sentences. I might read the first and last sentences, and from there, loose more interest in persevering. Thats what this area is: the Perseverance part of our brain.

Dr. Younger described that area...in the latest video on brain inflammation; in the frontal cortex.

I was just discussing with another person on one of my threads how it remind me of the Dawn phenomenon
And maybe our brains are not registering we are not awake or fully awake to start up all of our body functions. Maybe some important process has decided to sleep in?
Everybody has issues waking up , then sleeping all day.

 

[I am sick]

It was not the link that locked up my phone.
My phone was trying to do an update.
It just finished the update, so I am now finaly able to correct my statement.

 

[andyguitar]

There is a fairly new drug that targets anti CD3 antibody. It's been used to prevent an overactive immune response in Covid 19 infection. Called Foralumab

Well fancy that, I just had a look around the web and found that the makers of that drug are proposing a trial of it to treat Long Covid. Could'nt get any details but I did manage to see mention of "microglial activation". Damping it down I expect. Want to have a look? Put "Trial of Foralumab to treat Long Covid" into your search box.

 

[I am sick]

Well fancy that, I just had a look around the web and found that the makers of that drug are proposing a trial of it to treat Long Covid. Could'nt get any details but I did manage to see mention of "microglial activation". Damping it down I expect. Want to have a look? Put "Trial of Foralumab to treat Long Covid" into your search box.

Yes I see where they let you do the trial at home.
I am going to search here localy, they do a lot of paid trials in my area, I have been paid to do some along with other family members.
https://www.neurologylive.com/view/fda-allows-home-dosing-intranasal-foralumab-ms

 

[I am sick]

It appears the trials are only for MS patients and it has a long criteria list you have to meet.
Even if they were trialing at this time for covid anywhere close I would not meet thier requirements.
But its a Great Start!

 

[Rufous McKinney]

found that the makers of that drug are proposing a trial of it to treat Long Covid.

How is long covid diagnosed, enabling a drug trial to happen? And in what country?

If it's about MS and not long covid, that doesn't seem to have firm diagnostics, so how does that happen?

 

[I am sick]

How is long covid diagnosed, enabling a drug trial to happen? And in what country?

If it's about MS and not long covid, that doesn't seem to have firm diagnostics, so how does that happen?

I see where they have 4,100 participants in 41 countries and they are testing it in the US but for MS but they are interested in trialing it with current covid infections.
And I hear you ! No one can comfirm long covid as a real Thing?
But some articles state it could be a treatment for long covid!
Maybe some countries do accept long covid.
Or maybe they are looking for investors?

Why isnt Big Pharma looking for a cure to cash in?

 

[datadragon]

That would support stronger nurture than nature influence. Women in general get sick more often with autoimmune diseases and ME/CFS might be a part of this cluster. I guess we won't know for sure, it still may be anything from different upbringing of girls to naturally higher estrogen levels.

Here is the reason. A higher ifn-y.
https://forums.phoenixrising.me/thr...by-human-t-cells-in-a-sex-specific-way.90323/

BTN2A2 also inhibited T cell metabolism, IL-2, and IFN-gamma (ifn-y) secretion. So perhaps an effect on ifn-y is the benefit.
https://pubmed.ncbi.nlm.nih.gov/20208008/.

Nlrp3 activation such as from inflammation or infection, fructose or heavy exercise would also increase ifn-y leading to the wasf3 increase and pem.
Interestingly smpdl3b requires zinc ions as does tlr4 and tlr3, which can be downstream effects of the nlrp3 activation to lower zinc absorption and put it into the cell.
Post in thread 'Research: SMPDL3B a novel biomarker and therapeutic target in ME'
https://forums.phoenixrising.me/thr...d-therapeutic-target-in-me.93614/post-2481111

 

[andyguitar]

It appears the trials are only for MS patients and it has a long criteria list you have to meet.

I see where they have 4,100 participants in 41 countries and they are testing it in the US but for MS but they are interested in trialing it with current covid infections

You are looking at the wrong thing! It's this....

 

[I am sick]

Here is the reason. A higher ifn-y.
https://forums.phoenixrising.me/thr...by-human-t-cells-in-a-sex-specific-way.90323/

BTN2A2 also inhibited T cell metabolism, IL-2, and IFN-gamma (ifn-y) secretion. So perhaps an effect on ifn-y is the benefit.
https://pubmed.ncbi.nlm.nih.gov/20208008/. Nlrp3 activation such as from inflammation or infection, fructose or heavy ecercise would also increase ifn-y leading to the wasf3 increase and pem.
Interrstingly smpdl3b requires zinc ions as does tlr4 and tlr3, which csn be downstream effects of the nlrp3 activation.
Post in thread 'Research: SMPDL3B a novel biomarker and therapeutic target in ME'
https://forums.phoenixrising.me/thr...d-therapeutic-target-in-me.93614/post-2481111

Hi
Thanks
That is some Awesome work!
I have one question
What specific type of Zinc was used?
Their are many forms , but no one evers says what was used in any searches I have done.
But thier are many different types of zinc.
I could have overlooked it also.
Thanks

 

[andyguitar]

How is long covid diagnosed, enabling a drug trial to happen? And in what country?

By the symptoms and medical history. As far as I know every country accepts Long Covid as a disease. Clinical trials for its treatment are taking place world wide.

Maybe some countries do accept long covid.

I dont know any that dont. Where on earth do you get your information from?

 

[I am sick]

You are looking at the wrong thing! It's this....View attachment 56066

Hi
I actually read that one.
And I think it is Awesome and Thank you for providing the news.
I see where everyone recconizes long covid , but no one confirms it and no test to prove it.
So I wonder how insurance will approve a medicine for something that cant be proved at this time ?
That is the confusion at the announcement for me.

 

[I am sick]

By the symptoms and medical history. As far as I know every country accepts Long Covid as a disease. Clinical trials for its treatment are taking place world wide.

I dont know any that dont. Where on earth do you get your information from?

Hi
I think its Great
But thier are no test to prove a person has long covid .
If you know of one Please let me know so I can correct three Specialist
That have told me No one has a test.
I have one at Duke I would enjoy to prove wrong!
Thanks

 

[andyguitar]

but no one confirms it and no test to prove it.
So I wonder how insurance will approve a medicine for something that cant be proved at this time ?

You dont need a test to prove it, in the same way you dont need a test to prove me/cfs. People with me/cfs get treatment paid for by insurers and they get disability benefits. Its the same for Long Covid.

 

[datadragon]

That is some Awesome work!
I have one question
What specific type of Zinc was used?
Their are many forms , but no one evers says what was used in any searches I have done.
But thier are many different types of zinc.
I could have overlooked it also.
Thanks

we may need a chelated zinc (zinc amino acid) that is not glycinate or picolinate based on the below so far although I was hoping the lowering of inflammation would restore the zinc metabolism and lessen its additional requirement in some people.

other kynurenine metabolites, quinolinic, and picolinic acids, can also enhance IFN-γ-dependent iNOS expression https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5808205/
As far as Glycine's acute effects on glutamate, it can be directly used as a NMDA receptor ligand, on the glycine binding site. That means in some ways it is a glutamate supplement, allowing NMDA receptors to work in the first place. The N-methyl-D-aspartate receptor, is a glutamate receptor. So perhaps the form like a magnesium glycinate or solgar zinc glycinate (solgar chelated zinc) might not work well for this situation, why I suggested to try magnesium sulfate instead for example. Glutamine also can increase glutamate why I mentioned some other nlrp3 inhibitors.

 

[I am sick]

You dont need a test to prove it, in the same way you dont need a test to prove me/cfs. People with me/cfs get treatment paid for by insurers and they get disability benefits. Its the same for Long Covid.

I probably need some new Doctors
Or move to another Country ! The doctors I see in the USA look at me like I am Crazy when I ask about Me/Cfs and long covid.
I read where a lot of the people on this same forum have issues when asking about Me/Cfs.
One Dr told me I may have Long covid and that Dr was at Duke in Raleigh Nc. So I asked to be tested and he said their was not a test.
My Insurance will not pay for any medications , because a Dr will not report it to an insurance company.
That is my situation, It may not be for other people.