Infection -> Epigenetic Change -> Systemic Inflammation = ME/CFS

Learner1

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I don’t wanna have to be the one organizing all my labs and notes and making the full treatment plan, I am too sick for that. If chheda can do that, that would be miraculous.
There is no way that I would have made it this far without organizung all my lsbs and notes, both physically and on my Google drive. I spend a good deal of time cyrating info to share with my doctors including what labs they see and applicable research articles. Then, I list all current symp toms, updates on treatments and whst my other doctors sre doing or have said, questions for the visit, and concerns I have.

This typically let's my doctors know im educated, serious, and motivated to get well, and they treat me with respect, appreciative of the valuable info I've brought them and they can quickly assess it, think about any new ideas, ask questions, and we can work together to decide what to do next

Of course, there are doctors who aren't appreciative and blow off what I've brought, but we quivkly and mutually conclude we aren't a mstch and move on.
 

Learner1

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Okay, so fixing the oxidative stress is still important, but do you have any emf avoidance strategies, like shielding or even just reduced phone use?
Yes.

The nitrosative stress is just as important as the oxidative stress, as it's what damages your mitochondrial membranes and impairs complex I of your mitochondria.
 

debored13

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There is no way that I would have made it this far without organizung all my lsbs and notes, both physically and on my Google drive. I spend a good deal of time cyrating info to share with my doctors including what labs they see and applicable research articles. Then, I list all current symp toms, updates on treatments and whst my other doctors sre doing or have said, questions for the visit, and concerns I have.

This typically let's my doctors know im educated, serious, and motivated to get well, and they treat me with respect, appreciative of the valuable info I've brought them and they can quickly assess it, think about any new ideas, ask questions, and we can work together to decide what to do next

Of course, there are doctors who aren't appreciative and blow off what I've brought, but we quivkly and mutually conclude we aren't a mstch and move on.
I mean I’ve tried very hard to do this. But I can’t really handle it , and the sicker I get the harder it is to do this. I am sometimes too sick to type although symptoms wane, but I also have way more issue based on energy with organizing anything than with just rambling off topic. It’s huge executive dysfunction. I had adhd before I ever got ill , so I know what executive functioning issues are like, but that was treatable with meds and this is ten times worse. I know that I have to at least provide my medical history but I was hoping that at this point in the process a doctor can take charge and organize stuff for me.

With regard to Levine not doing that, I don’t think it’s just me, several people have had the complaint that she doesn’t keep track of their labs or have any follow up at all past the initial two appointments. I am not trying to trash her, she’s a good researcher and has some good treatment ideas , but I am hoping it’s possible to find a doctor that is not spread too thin, that is very attentive to each case, and that can follow up long distance perhaps even promptly in crises. That is what I’ve heard good things about re: kaufman and chheda. I’m hoping this is true.
 

debored13

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This typically let's my doctors know im educated, serious, and motivated to get well, and they treat me with respect, appreciative of the valuable info I've brought them and they can quickly assess it, think about any new ideas, ask questions, and we can work together to decide what to do next
I am extremely motivated and serious about getting well, but this applies torestomg and also to accurately assessing my limits. It gives me PEM to even do simple tasks like making a phone call or thinking through a simple problems. I guess there isn’t really a role for social workers in ME/CFS Bc they probably don’t understand and work with there’s not being a straightforward treatment protocol but I still think something like this would help ideally. It’s not that I’m not trying. And the other problem is that if doctors aren’t organized on their end, or serious about helping me, even when I do get it together to have an organized idea for a treatment I wanna try, or a referral I need, it’s often wasting precious energy, and I end up crashing. After having spent time pleading with a doctor and organizing my stuff for an appointment and then being told that we can’t really do anything or having that doctor say “oh I’ll look at your notes and maybe we’ll try this” when we’ve already talked about it several times over six months. I am less and less able to do even simple things, but even when I have been organized I have not had very responsive doctors
 

Wishful

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Isn’t there probably an issue in the metabolism of our T cells or something to be overwhelmed by common infections so easily?
I don't get the impression that PWME have more problems than usual with common infections. I get the opposite impression: that many of us have less issues with common infections. It may be over a decade since my last viral infection. Either I'm avoiding infection, or my t-cells destroy them immediately. I think this is another area where PWME vary a lot: some are more susceptible, some less, and some unchanged.
 

prioris

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I don't get the impression that PWME have more problems than usual with common infections. I get the opposite impression: that many of us have less issues with common infections. It may be over a decade since my last viral infection. Either I'm avoiding infection, or my t-cells destroy them immediately. I think this is another area where PWME vary a lot: some are more susceptible, some less, and some unchanged.
i rarely got colds and flu's in last 50 years with disease ... maybe once every decade ... it protected me against those ... others have reported that too ... theory is that immune system is in highly active state .... i'm much more vulnerable in last 10 years but probably because i am healthier .. i use beta glucan to protect myself so will essentially never get a cold or flu
 

ljimbo423

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I don't get the impression that PWME have more problems than usual with common infections. I get the opposite impression: that many of us have less issues with common infections. It may be over a decade since my last viral infection. Either I'm avoiding infection, or my t-cells destroy them immediately. I think this is another area where PWME vary a lot: some are more susceptible, some less, and some unchanged.
I haven't had a cold or a flu in well over 10 years, probably longer. I go to stores where there are dozens or hundreds of people in and out of every day, so I am getting exposed to the viruses.

What's your take on why so many people with ME have high viral titers for EBV, CMV and so many others. I'm still not sure quite what to make of that.
 

MonkeyMan

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My two cents: this model (Infection -> Epigenetic Change -> Systemic Inflammation = ME/CFS) fits perfectly with my own experience. My problems started with a horrible yeast overgrowth, due to tetracycline over-use. Since then I've felt like my immune system has been in over-drive. And aside from the daily suffering I endure with ME/CFS, I almost never get sick.
 

Wishful

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[QUOTE="ljimbo423, post: 2184257, member: 3070"What's your take on why so many people with ME have high viral titers for EBV, CMV and so many others. I'm still not sure quite what to make of that.[/QUOTE]

No take at all. I haven't paid any attention to viral stuff. I do remember that one test showed that I had antibodies for EBV, but that's all. Our immune systems are in an abnormal state, but exactly what that means regarding viral infections is something for an expert virologist to figure out. I'm just glad that it does give me some protection from infections. Viral infections (I think I had only two since developing ME) make my ME symptoms worse, so I'm really glad to avoid that.
 

debored13

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I seem to get floored by common infections and my titers to many viruses are high and I also tend to have low IgG. I’m not sure if this means I don’t have this illness or if there are different sunsets but I will note that at the early outbreaks in Tahoe and ny in the 80s this illness was associated with immune deficiency to an extent , people sometimes thought of the severe cases as “non hiv aids”
 

prioris

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I seem to get floored by common infections and my titers to many viruses are high and I also tend to have low IgG. I’m not sure if this means I don’t have this illness or if there are different sunsets but I will note that at the early outbreaks in Tahoe and ny in the 80s this illness was associated with immune deficiency to an extent , people sometimes thought of the severe cases as “non hiv aids”
ME/CFIDS have hundreds of symptoms. ME/CFIDS will likely amplify any existing weaknesses you have already. Different people have different weaknesses. One aspect for me is a very low killer cells. I measured 4 on Klimas test years back. Normal is around 40 for healthy people.
 

msf

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I attended that conference and found it very depressing to hear, one after the other, the scientists saying, "Don't try this at home." It was infuriating.

The scientists don't have all the answers yet. They are reading the data, playing hunches, and running experiments. They are doing the very best they can, with the resources they have. And, the pace has been accelerating in the past 5 years, and they are coordinsting with each other. It is truly amazing, and they will crack this.

Tragically, it will be too late for some of us. Some of us are in our 50s, 60s, and 70s, and are running out of time. Others are younger, but will succumb to this disease, to cancer, etc.

We can't sit idly by, waiting in our beds to bring us perfect answers. Because we are each unique, with different genetics, environmental factors, and comorbidities, what works for one, or for the perfect patient, wont work for all of us, even after the long wait.

The more we learn about ourselves in this era of p4 medicine will help us each in our quest to get well.

It's not just one theory chosen from amongst competing theories, but using systems biology to weave together compatible theories into a body of knowledge that provides a roadmap of diagnostics and treatments to bring us back to health.

No, and we wont for many years. If we think of an analogy to cancer, if you take 50 patients all with X cancer, they will benefit from a toolbox of diagnostics and treatments that can be applied to each patient's unique situation. Treating people like widgets can be catastrophic. We need to individualize for each of us.

Unfortunately, there have been very few findings that are clinically applicable to all of us.

There was a recent interview with Susan Levine, who characterized ME/CFS like cancer - she thinks well find its a group of diseases with some key similarities but differences between them. Jarred Younger has found different subgroups, Stanford is looking at different subgroups, ...

This is incredibly complex. But, my doctors and I have learned a lot, and the treatments I've had, built upon some of these theories, that we've chosen when my test results seem to match theories, have been paying off, one by one. And, I, for one, have experienced huge benefits from translating and harnessing theories of Maes and Morris, Fluge and Mella, Younger, Armstrong and McGregor, Hanson and Levine, and many others. It is possible to make headway now, with thoughtful choices, and access to doctors, tests, and treatments.

There will be mistakes, but given that there's little alternative today, it's worth trying.

That's why it's good to know what tests exist to examine some of these ideas, so one is not just making educated, and not foolhardy guesses. Because, as I learned un the cancer world, there are some choices one cannot reverse. Being prudent is wise.
 

msf

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Actually there are already some treatments you can try, basically anything that affects PDC. If you don't like the idea of taking DCA then take ALA and Resveratrol instead. Trazodone or LDN for sleep.
 

prioris

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the medical establishment is very criminal and perverted.
the health care system is a travesty. it needs extreme reform.
the cost of health care could drastically be lowered while improving health care drastically
one major impediment to this is a brainwashed public
at the end of the day, the ball is in your court
you have to figure out how to play it via your own due diligence
it's a trial and error process
doing it while sick is just not easy but it is what it is
 
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Theories that make everything seem to fit are CHEAP.
Since I was tagged, let me chime in with my two cents. Before I started to really dive in depth, I thought the same thing. That there are plenty of good theories and the issue is to find out which one is correct.
But that's actually not the case, in my current opinion. Almost every theory I have seen so far for ME/CFS is really bad. Even my own two big hypotheses have serious problems with them. The reason I presented them was because I felt there is a significant enough probability those problems could be resolved, not because I thought they were perfect.

I think perhaps people tend to focus too closely on things that fit, that they pay no mind to the things that don't, which are often just as plentiful. This is a natural human reaction, because we want to have the correct answer. But once you start asking precise, difficult questions about each theory, you can see that they're often closer to "nothing makes any sense" than "everything fits".

The key question then becomes "what is the probability of the holes in this theory stemming from things we don't know in biochemistry, rather than from it being the wrong theory". Which is a weird and hard estimation to make.

For me currently the most solid theory is Rob Phair's IDO trap, as we were able to resolve the biggest holes I saw in it.
 
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Since I was tagged, let me chime in with my two cents. Before I started to really dive in depth, I thought the same thing. That there are plenty of good theories and the issue is to find out which one is correct.
But that's actually not the case, in my current opinion. Almost every theory I have seen so far for ME/CFS is really bad. Even my own two big hypotheses have serious problems with them. The reason I presented them was because I felt there is a significant enough probability those problems could be resolved, not because I thought they were perfect.

I think perhaps people tend to focus too closely on things that fit, that they pay no mind to the things that don't, which are often just as plentiful. This is a natural human reaction, because we want to have the correct answer. But once you start asking precise, difficult questions about each theory, you can see that they're often closer to "nothing makes any sense" than "everything fits".

The key question then becomes "what is the probability of the holes in this theory stemming from things we don't know in biochemistry, rather than from it being the wrong theory". Which is a weird and hard estimation to make.

For me currently the most solid theory is Rob Phair's IDO trap, as we were able to resolve the biggest holes I saw in it.
I agree with this and the word *seem* is doing a lot of work in my sentence above:

"Theories that make everything seem to fit are CHEAP."

It's easy to show links between ideas and elide all the ways in which there are inhibitors or pieces that don't fit.

Ultimately theory must match the real world. The reason theories work for our minds when they don't match the real world is we don't have a good model of the real world in mind.
 
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What I'm saying is that most of the theories that exist can be discarded as low probability even without studies attempting to directly verify them. There is a great deal of scrutiny that can be put on a theory in a purely theoretical discussion, perhaps more than you seem to assume. Yes we don't have a good model of the real world in our mind, but we have various high detail models of the real human body in the already published biochemical papers, and those models are as good as we're ever going to get, for a lot of things.