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

[I am sick]

I feel that is a common reaction. Something comes up and demands our attention, which is hard to garner. It probably is adrenaline or related type of reactions. It overrides the Sickness Behavior for a bit of time. And the AD situation, also common with us.

If the "something" arises when we are badly crashed, things could turn out badly.

And I'm describing people with ME who can get up and move around some.

Hey there!
I thought at one time I had Lack of purpose fatigue .
And while I was seeing Dr's I figured I might as well have my Mental state looked at too.
So I saw three different therapists
The others were second opion and third opinion.
They tried some of those mind altering drugs but they did not help me!
My Dr put me on PristiQ and to me it did not feel like it helped, my Wife told me it does, she says I am more laid back! I told her if I get any more laid back I would be in a coma!
So basically I listened and I am still taking it.
I always ask her to keep an eye on me when I am taking new medications and to hide the bottle if I start acting strange , because I might not be able to realize the change !

 

[Viala]

More research will be done using these findings, this paper is just the start.
Hypoxia could be a more likley cause than inflammation.

Yes, keeping fingers crossed that they will work on each of these genes, maybe one of them will be the main switch that will turn the lights back on. ME/CFS definitely feels that way sometimes. On/off.

Why do you think hypoxia could be more likely?

 

[I am sick]

You need a new Doc. I suggest trying Hunter-Hopkins in Charlotte NC, they know about me/cfs. Starting the process of getting disability should be a priority for you. You will need medical evidence for that.

The best one is Genome Wide Sequencing -GWS. Ballpark cost $1500-$2000. It wont give you cure and you dont need it to get benefits or decide on what treatment to have. So maybe save your money for the probable cost of getting a diagnosis from a me/cfs specialist. Insurance does not always cover all the cost for that.

The paper I posted at the start of the thread is about 46 pages long. Did you download it all ok?

Hunter Hopkins
Has not returned my call or replied to my question yet!
I am still giving them a chance though!

 

[NameHere]

(Added note: because none of these genetic differences are diagnostic biomarkers, just statistical correlations, they do not prove that ME/CFS is a genetically based disease.

I agree; it is not a genetic disease, in the same way that Celiac disease is not a genetic disease. There is a genetic susceptibility; that is all. The origin of the disease is not genetic.

 

[andyguitar]

Why do you think hypoxia could be more likely?

Effect of hypoxia can happen very rapidly. Can also resolve as quick. I cant see how widespread inflammation can just suddenly stop.

 

[andyguitar]

Yes, keeping fingers crossed that they will work on each of these genes, maybe one of them will be the main switch that will turn the lights back on

We also need to look at other things...... For instance lets take someone who gets me/cfs age 25. So for the previous 25 years they have been infected by a range of pathogens and gone through some stressful life events. But despite this genetic make up they did not get me/cfs. This suggests to me that the genes have a weak effect, but in certain situations the effect when combined with other factors causes me/cfs. Could be that what makes the difference is just weather or not someone trys to "push through" the initial symptoms. Doing that causes me/cfs. When it comes to how to fix things, I'd like to see T Cell function as the main focus of research now. And when it comes to treatment I think strategies to normalise T Cell function are the best way forward. There was some research years ago that showed that T Cells fom me/cfs patient were resistant to the steroid Dexamethasone.

 

[I am sick]

Effect of hypoxia can happen very rapidly. Can also resolve as quick. I cant see how widespread inflammation can just suddenly stop.

I cant either?
When I first developed my symptons
They would come and go for months at a time, I would be completely normal and I could do anything I wanted to , even bike ride 10 miles daily without any issues other than being sore. Then at some point I would wake up in the morning and be almost bedridden for months then wake up and be perfectly fine!
This went on for close to three years .
Last November It started as full time bedridden untill the Dr trialed the prednisone and I had a Miraculous almost six days of feeling just Awesome!
Then I was instantly back to bedridden.
And during all this time I was seeing Dr's .
I am managing ok but only with the Adderall.
I just found out if something urgent comes up and I need to respond , I can do it without thinking about the Cfs until I am done.
Its very Strange!

 

[I am sick]

Can we be over thinking this ?
I am leaning towards High calcium
Levels.
For myself.

In 2021 before I had omicron
HX CALCIUM
Normal range: 8.5 - 10.5 MG/DL
Mine was 7.8

July 17th 2025
Now it the highest ever right after kidney stone surgey
Mine 10.3
Why did it increase?
I know thier are some reports that say imflamation increases calcium levels
So I am just guessing like everyone else!
My calcium levels have slowly increased constantly since my Omicron infection, even though I avoid everything I can with calcium since I have kidney stones.
I see my urologist this week so I will see if I can get a prescription for one of those calcium lowering meds
And then I can report latter if my fatigue changes

Calcium can directly affect the gut microbiota, potentially promoting the growth of certain bacterial groups while inhibiting others. For example, high calcium levels can favor the proliferation of Firmicutes members like Romboutsia, Roseburia, Ruminoclostridium, and Ruminococcus.

 

[I am sick]

@andyguitar

Hi
By doing my post I just remembered something .
When I was doing the Dr . Prednisone trial I was also on.
sulfamethoxazole-trimethoprim (BACTRIM DS) 800 -160 mg per tablet.
To prevent infections for my upcoming
Kidney stone surgery.
So was it the prednisone ?
Or was it the antibiotic ?
That caused the complete remission ,
I did stop both at the same time I think!

 

[Viala]

So for the previous 25 years they have been infected by a range of pathogens and gone through some stressful life events. But despite this genetic make up they did not get me/cfs. This suggests to me that the genes have a weak effect, but in certain situations the effect when combined with other factors causes me/cfs. Could be that what makes the difference is just weather or not someone trys to "push through" the initial symptoms. Doing that causes me/cfs.

I think it can be epigenetic, gene expression could be changed by a pathogen, food sensitivities, nutritional deficiencies etc. This combined with a certain set of genes and a stressful event like getting sick could push us beyond manageable threshold and create a cascade resulting in ME/CFS, keeping us in a vicious circle of sickness, until the core problem is resolved.

I agree that ME/CFS is likely multifactorial, itwould explain why it is so difficult to find a cure or anything that actually helps. I observe it in my research, it's not one thing to be fixed, all factors need to be fixed at the same time, if not we may get temporary remission only. Then it's getting interesting because we may all have different triggers and epigenetic reactions, which would require different treatment depending on the type. And still there may be a master switch that we all may share which could stop the cascade, like for example T-cells that you are writing about.

 

[Viala]

My calcium levels have slowly increased constantly since my Omicron infection, even though I avoid everything I can with calcium since I have kidney stones.

Magnesium and vitamin K2-MK4 can be helpful to put calcium where it's needed. Sodium and meat cause calcium loss. Magnesium citrate is good to dissolve kidney stones, some websites talk about this more. Also depending on what type of stones you have, oxalate type probably since these are the most common.

 

[I am sick]

Magnesium and vitamin K2-MK4 can be helpful to put calcium where it's needed. Sodium and meat cause calcium loss. Magnesium citrate is good to dissolve kidney stones, some websites talk about this more. Also depending on what type of stones you have, oxalate type probably since these are the most common.

Hi
My Urologist does not want to try the citrate untill I get all my kidney stones out due the size of them.
It could make things worse !
I have one clear now I just need the other one done and hopefully done soon.
I am just generating a lot of calcium for some reason ?
And I have some building up inside my kidney parenchyma 1.3 cm and I now have prostratic stones
in April I did not have this so it has to be investicated soon.

 

[Oliver3]

I feel that is a common reaction. Something comes up and demands our attention, which is hard to garner. It probably is adrenaline or related type of reactions. It overrides the Sickness Behavior for a bit of time. And the AD situation, also common with us.

If the "something" arises when we are badly crashed, things could turn out badly.

And I'm describing people with ME who can get up and move around some.

It's almost like a severe case of adhd.
Many sufferers of adhd get task paralysis.
Then all of a sudden it can lift.
Dopamine connection I'd say

 

[I am sick]

It's almost like a severe case of adhd.
Many sufferers of adhd get task paralysis.
Then all of a sudden it can lift.
Dopamine connection I'd say

That makes sense.

I have tried some various forms of Dopamine , capsules and gummies and they never did anything for me.

 

[Oliver3]

That makes sense.

I have tried some various forms of Dopamine , capsules and gummies and they never did anything for me.

I believe Ron Davies had a necklace made for his wide with the scientific symbols for dopamine.
He'd found ability helped his son and that there were many sided benefits to it in the body

Regretfully, I'm forced to use nicotine and mint.
It really helps bring me relief but I'm very aware of its cardio drawbacks. But it makes my life bearable. Limited use is essential but hard.
I believe nicotine also boosts mitochondrial function.
Helps my vision, my mood, even the constricted feeling in the neck.
I try to use it with cocoa powder to offset the oxidative stress.
I don't recommend it as such but am using it at the moment to get me through a rough time.
Probably as effective as diaezepam in uts calming nature for me

 

[Oliver3]

We also need to look at other things...... For instance lets take someone who gets me/cfs age 25. So for the previous 25 years they have been infected by a range of pathogens and gone through some stressful life events. But despite this genetic make up they did not get me/cfs. This suggests to me that the genes have a weak effect, but in certain situations the effect when combined with other factors causes me/cfs. Could be that what makes the difference is just weather or not someone trys to "push through" the initial symptoms. Doing that causes me/cfs. When it comes to how to fix things, I'd like to see T Cell function as the main focus of research now. And when it comes to treatment I think strategies to normalise T Cell function are the best way forward. There was some research years ago that showed that T Cells fom me/cfs patient were resistant to the steroid Dexamethasone.

I thjnk you're looking at it slightly wrong there andy.
It's not that they were fine for 25 years. It's that they have an allostatic tolerance load that hasn't been breaxhed until then Youth provides a lot if protection from most illness and m.e .
Stem cells, endothelium, immune structures all work best whilst young.
I understand that some people develop m.e. I childhood too.
Again, they were born weaker and / or exposed to epigsbtic changes.
Once the cell danger response is triggered, the cascades to healing stop or are impaired.
So for some ut will start in utero, for others related infections will impaired and degrade their resilience.
Resilience is very genetic is my general belief.
So we may look at the 25 year old who suddenly gets sick after an infection, stress, toxic exposure
But what is the event, or their innate lack of resilience.
I feel the events are the final straw for a genetically susceptible organism.
I mean, that's how Darwin saw species adapt or die out.
Our bodies are shutting down to save us.
The sickness behaviour is a response to ecogenic factors hitting our genetics.
So it looks like an I section etc causes the illness abd in a way ut dud, but uts the genetic susceptibility that made it possible

 

[I am sick]

I believe Ron Davies had a necklace made for his wide with the scientific symbols for dopamine.
He'd found ability helped his son and that there were many sided benefits to it in the body

Regretfully, I'm forced to use nicotine and mint.
It really helps bring me relief but I'm very aware of its cardio drawbacks. But it makes my life bearable. Limited use is essential but hard.
I believe nicotine also boosts mitochondrial function.
Helps my vision, my mood, even the constricted feeling in the neck.
I try to use it with cocoa powder to offset the oxidative stress.
I don't recommend it as such but am using it at the moment to get me through a rough time.
Probably as effective as diaezepam in uts calming nature for me

Hi
I am glad it helped Ron' s Son!
And I hope you are feeling Better.
I have been using smokeless tobacco
Snuff and chewing tobacco and swallowing the juice for about one year.
For me it does not appear to help
Maybe it does calm me some .
I am about to stop it .
So I will know if it was helping me more than I thought.

 

[I am sick]

Magnesium and vitamin K2-MK4 can be helpful to put calcium where it's needed. Sodium and meat cause calcium loss. Magnesium citrate is good to dissolve kidney stones, some websites talk about this more. Also depending on what type of stones you have, oxalate type probably since these are the most common.

Hi
I just talked to my Urologist Dr
I asked about the Magnesium citrate
The Dr told me that the Magnesium citrate is a good medicine for kidney stones , but the best go to medication
Is Potassium citrate to prevent kidney stones and calcium leaching from the bones.
Or that is what the Dr said.
The good news is I am not needing any kidney stones removed from my other kidney, the largest stone is only 4 mm and passible naturally.
So I am going to do another 24 hour collection test and then I will know what comes next!
Thanks for the Input

 

[Viala]

Hi
I just talked to my Urologist Dr
I asked about the Magnesium citrate
The Dr told me that the Magnesium citrate is a good medicine for kidney stones , but the best go to medication
Is Potassium citrate to prevent kidney stones and calcium leaching from the bones.
Or that is what the Dr said.
The good news is I am not needing any kidney stones removed from my other kidney, the largest stone is only 4 mm and passible naturally.
So I am going to do another 24 hour collection test and then I will know what comes next!
Thanks for the Input

I'm glad to hear you have good news. Yes, potassium citrate is another option recommended for kidney stones. I'm curious if that will bring down high calcium levels or if something more will be needed. Potassium should increase alkalinity so it can do the job to prevent calcium leaching from the bones, maybe better than magnesium.

 

[Oliver3]

Hi
I am glad it helped Ron' s Son!
And I hope you are feeling Better.
I have been using smokeless tobacco
Snuff and chewing tobacco and swallowing the juice for about one year.
For me it does not appear to help
Maybe it does calm me some .
I am about to stop it .
So I will know if it was helping me more than I thought.

Yes it's best as a calming agent, and helps with eyesight .
It's no cure, it's just part of a protocol to help in many but as you allude to, everyone is different.
It'll be interesting to see if tgere us any change for better or worse when you come off the stuff