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

[I am sick]

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 wonder why their are so many test and reccomendations online for zinc and the immune system and no one knows what type the are referring too , and no one ever states what type?
Almost all that I see claim immune boost support , not suppresion.
Why is it so confusing?

 

[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.

Hi
I justed wanted to say I am sorry if it sounds like I am trying to be difficult.
I am just trying to understand my current Doctors and health care industry in my area.

 

[wabi-sabi]

Women in general get sick more often with autoimmune diseases and ME/CFS might be a part of this cluster.

My guess is that it will be related to this. Whatever reason women get autoimmune diseases more than men will be related to why we get ME/CFS more often than men.

 

[Viala]

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

That makes sense, cortisol lowers production of interferon gamma. Anytime my cortisol spikes for any reason, I feel better, it happened also for a while when I took licorice. It's also interesting since it's implicated that some people after covid 19 have altered kynurenine pathway which may translate into higher anxiety, and this pathway is upregulated by IFN-y.

fructose or heavy exercise would also increase ifn-y leading to the wasf3 increase and pem.

This would suggest metabolic issues which could drive IFN-y upregulation.

 

[NameHere]

An interesting study, but in most cases it does take more than just genes to initiate disease. There has to be an environmental trigger, coupled with other factors. I saw some indications in this study that seemed to the authors wanting to target genes in treatment, but this is not the answer. The genes are not the causative factor.

What is needed is a study that enrolls people who get an infection known to trigger CFS/ME, such as EBV or glandular fever etc, and then study their microbiome, immune responses and brain responses for the next 5 years to see how the disease develops during and after the infection. Those who do not develop CFS/ME are the controls.

 

[I am sick]

An interesting study, but in most cases it does take more than just genes to initiate disease. There has to be an environmental trigger, coupled with other factors. I saw some indications in this study that seemed to the authors wanting to target genes in treatment, but this is not the answer. The genes are not the causative factor.

What is needed is a study that enrolls people who get an infection known to trigger CFS/ME, such as EBV or glandular fever etc, and then study their microbiome, immune responses and brain responses for the next 5 years to see how the disease develops during and after the infection. Those who do not develop CFS/ME are the controls.

Hi
I posted a study where patients pets were having the same Me/Cfs symptons , the pet treatment used a form of arsenic that cured most of the pets, I think it was close to a 5 year study. I forget easily now!

 

[wabi-sabi]

An interesting study, but in most cases it does take more than just genes to initiate disease. There has to be an environmental trigger, coupled with other factors. I saw some indications in this study that seemed to the authors wanting to target genes in treatment, but this is not the answer. The genes are not the causative factor.

Of course.

But the purpose of this study is to identify which genes are targeted by the causitive factor, not to identify the causitive factor itself. You might even identify the positive factor just by asking people. We've had a good idea about causative factors for a long while. The genes are the missing piece that this study fills in.

 

[Rufous McKinney]

I see where everyone recconizes long covid , but no one confirms it and no test to prove it.

I dont know when long covid became an Everybody recognizes it issue. I thought it was quite the opposite.

 

[I am sick]

I dont know when long covid became an Everybody recognizes it issue. I thought it was quite the opposite.

After a few searches basically everyone recconizes it.
start on the second page and read the requirements.
The way I read it all I have to do is use the symptons they cant prove is right or wrong.
Then I can get some much needed disability check.

https://www.ssa.gov/disability/professionals/documents/EN-64-128.pdf

 

[Rufous McKinney]

The way I read it all I have to do is use the symptons they cant prove is right or wrong.
Then I can get some much needed disability check.

for this "lay person's" disease.....?

 

[southwestforests]

The way I read it all I have to do is use the symptons they cant prove is right or wrong.
Then I can get some much needed disability check.

Getting Social Security Disability is not easy,
Looking at the way this is worded that "all I have to do is use ..." strikes me as an incomplete understanding of how the thing works.

SSD requires a lot of documentation from your health care providers,
both you and they have quite a bit to do,

you have this 14 page work history form to fill out and provide to SSD,
https://www.ssa.gov/forms/ssa-3369.pdf

and from this the linked Long Covid guide PDF says what SSD requires from the health care providers,

Medical reports you provide to us should include a
thorough description of the individual’s medical history,
with information on the diagnosis, onset, duration,
and prognosis of the individual’s COVID-19; Long
COVID; conditions that might be associated with,
exacerbated by, or consistent with Long COVID; and
any other conditions. Longitudinal clinical records and
detailed historical notes discussing the course of the
condition(s), including any treatment prescribed and
the individual’s response to treatment, are very useful
for us because we are interested in the impact of the
illness over time.

Include in your reports all clinical findings (such as
results of physical examinations and mental status
examinations) and laboratory findings (such as blood
tests, magnetic resonance imaging, or any other
clinically accepted form of testing), both positive and
negative, including any findings used to support a
diagnosis of COVID-19 or Long COVID. A positive
viral test result for SARS-CoV-2 is not necessary
for a diagnosis of COVID-19 or Long COVID. It is
essential that you submit all available objective findings
concerning your patient’s condition, even if the findings
may relate to another disorder or establish that the
individual has a co-occurring condition.

Your descriptions of any functional limitations you
noted throughout the time you examined or treated the
patient are very important. If possible, please provide
your opinion of the individual’s ability to do daily
activities or work-related physical and mental activities.
Tell us your opinions about both the individual’s
physical and mental functions and, to the extent
possible, the reasons for your opinions, such as the
clinical findings and your observations of the individual.

Examples of work-related functions include:
• Physical functions: The ability to walk, stand, sit, lift,
push, pull, reach, carry, and handle.
• Mental functions: The ability to understand,
remember, and carry out simple instructions; the
ability to use appropriate judgment; and the ability
to respond appropriately to supervision, co-workers,
and usual work situations, including changes in a
routine work setting.

And then there is frequently an original denial by SSD
which requires filing for an appeal hearing.
Which often, usually, requires a lawyer, who usually works for a fee of maybe 30% of the settlement award if the appeal is successful.

It can take a year for the appeal to happen, maybe longer.

-------------------------------

My appeal hearing in 2007 or 2008, I forget, was kind of amusing when the doctor SSD brought in as an expert witness for their side turned against SSD and said to the Judge there was no reason my claim should have been denied, it was obvious that I could no longer work. Ended up with me getting SSD and a lump sum payment of something like 18 months 'back pay'.

 

[andyguitar]

justed wanted to say I am sorry if it sounds like I am trying to be difficult.

Dont worry about it, all is fine.

Whatever reason women get autoimmune diseases more than men will be related to why we get ME/CFS more often than men.

I was expecting the results to show a strong signal for autoimmune disease, but unless I've missed something, there is nothing there. Seems to be that me/cfs patients are reacting to the same triggers that the general population does but the way the immune system then functions is at fault. An over reaction. So nothing wrong with the immune system's on switch, it's the off switch thats up the creek.

What is needed is a study that enrolls people who get an infection known to trigger CFS/ME

Could be a long time before any more big genetic studies get done, so in the meantime for those who can afford it getting a genetic test might be money well spent. At the moment I am looking into what could in some way protect men from getting me/cfs.

 

[southwestforests]

At the moment I am looking into what could in some way protect men from getting me/cfs.

We were living in the same houses for what was it, 22 years, maybe there is something there, but Dad and I had very different adult work environments, he was in the Navy and I was a civilian who worked retail.
We also had very different childhood environments, he was a midwestern farm kid, I was a west coast then east coast suburbs kid.
He was a fit and studly high school and college athlete, my health and body had been some degree of iffy since birth.
And yet,
We both ended up with ME/CFS in our early 40s, what's up with that?

 

[andyguitar]

We both ended up with ME/CFS in our early 40s, what's up with that?

Genetics?

 

[Oliver3]

An interesting study, but in most cases it does take more than just genes to initiate disease. There has to be an environmental trigger, coupled with other factors. I saw some indications in this study that seemed to the authors wanting to target genes in treatment, but this is not the answer. The genes are not the causative factor.

What is needed is a study that enrolls people who get an infection known to trigger CFS/ME, such as EBV or glandular fever etc, and then study their microbiome, immune responses and brain responses for the next 5 years to see how the disease develops during and after the infection. Those who do not develop CFS/ME are the controls.

I disagree, the genes are ground zero.
The triggers need to be understood but if you don't have the genes, you don't need to worry about the trigger.

 

[andyguitar]

At the moment I am looking into what could in some way protect men from getting me/cfs.

Could be Testosterone. It makes T Regulatory cells (T- Regs) work better, they regulate the immune response. T-Regs used to be called suppressor cells.

 

[I am sick]

for this "lay person's" disease.....?

Yeah I am not scamming the system !
I cant even get a Dr I am seeing to beleive Me/Cfs exists

 

[I am sick]

Getting Social Security Disability is not easy,
Looking at the way this is worded that "all I have to do is use ..." strikes me as an incomplete understanding of how the thing works.

SSD requires a lot of documentation from your health care providers,
both you and they have quite a bit to do,

you have this 14 page work history form to fill out and provide to SSD,
https://www.ssa.gov/forms/ssa-3369.pdf

and from this the linked Long Covid guide PDF says what SSD requires from the health care providers,



And then there is frequently an original denial by SSD
which requires filing for an appeal hearing.
Which often, usually, requires a lawyer, who usually works for a fee of maybe 30% of the settlement award if the appeal is successful.

It can take a year for the appeal to happen, maybe longer.

-------------------------------

My appeal hearing in 2007 or 2008, I forget, was kind of amusing when the doctor SSD brought in as an expert witness for their side turned against SSD and said to the Judge there was no reason my claim should have been denied, it was obvious that I could no longer work. Ended up with me getting SSD and a lump sum payment of something like 18 months 'back pay'.

Great hear you got it !
That is Awesome!
If you look at the link i posted they ask for medical findings. No Dr I see will
Present any , because they dont believe in long covid since they cant do a test , or have seen one available.
Hopefully in time their will be one

 

[wabi-sabi]

I was expecting the results to show a strong signal for autoimmune disease, but unless I've missed something, there is nothing there.

Weren't there immune system genes implicated? What's the difference there with autoimmune?

 

[I am sick]

Dont worry about it, all is fine.

I was expecting the results to show a strong signal for autoimmune disease, but unless I've missed something, there is nothing there. Seems to be that me/cfs patients are reacting to the same triggers that the general population does but the way the immune system then functions is at fault. An over reaction. So nothing wrong with the immune system's on switch, it's the off switch thats up the creek.

Could be a long time before any more big genetic studies get done, so in the meantime for those who can afford it getting a genetic test might be money well spent. At the moment I am looking into what could in some way protect men from getting me/cfs.

What genetic test would I ask for to see what I have ? And if they be a cure?
I owe enough now that they will never get paid back in my life time!
Another $20k is not going to upset me at all!
Please give me a name.
Thanks