Some older symptoms came back, is there a contagious component to some of these illnesses?

[Wishful]

It's possible that ME/CFS makes us more sensitive to the effects of minor viral infections or flare-ups. A healthy person might not even notice the minor immune system activation, but we feel our ME/CFS symptoms flare up strongly. We might get fewer actual infections, but notice them more when we do get them.

I strongly believe that my ME isn't caused by an ongoing viral infection or by gut issues, but I can't be certain, in the scientific sense of the term.

 

[Hip]

I think thats just a matter of semantics though. We are talking amongst ourselves here.

Yes, perhaps @ljimbo423 just meant to say something like "my hunch is that my ME/CFS does not involve a viral infection". Perhaps my response was a tad reactionary; I apologize for that, @ljimbo423.

I was just trying to say that none of us can be certain about what causes our ME/CFS, because even the world's leading researchers who have been investigating ME/CFS for decades do not know what causes ME/CFS (though each researcher may have their own theories and hypotheses).

Most importantly CFS/ME patients and loved ones should not worry and be paranoid about spreading illness or getting sick. Because its not likely to easily spread to others.

Its not like they ever felt the need to quarintine every single person who has contracted Me/CFS. And the obvious number of CFS/ ME people who had many people in their lives both social and romantic life who never became ill themselves.

That's right, ME/CFS patients should not worry about spreading illness any more than a member of the general public should. The viruses linked to ME/CFS are commonly found in the general population anyway, and we all harbor various infectious pathogens that can spread to others and potentially cause disease.

It's possible that ME/CFS makes us more sensitive to the effects of minor viral infections or flare-ups. A healthy person might not even notice the minor immune system activation, but we feel our ME/CFS symptoms flare up strongly.

That's one theory that makes sense to me, and has been proposed in the form of the immune priming theory of ME/CFS. See the posts here, here and here for more info on immune priming.

In this sensitized immune system theory of ME/CFS, you may still need an ongoing low-level infection to activate the immune response; but in this theory, it's not the infection which alone which causes ME/CFS, but the infection in the context of a sensitized immune system.

 

[Wishful]

@Hip, are these proposed ongoing low-level infections stable for many years? I feel that it's unlikely for a viral infection and the body's response to it to remain stable for that long. I'd expect more variability in symptom severity, especially in response to other immune-activation events, diet, and other variables. It's not impossible, but just doesn't seem as likely as other possibilities to me.

 

[ljimbo423]

Yes, perhaps @ljimbo423 just meant to say something like "my hunch is that my ME/CFS does not involve a viral infection". Perhaps my response was a tad reactionary; I apologize for that, @ljimbo423.

I was just trying to say that none of us can be certain about what causes our ME/CFS, because even the world's leading researchers who have been investigating ME/CFS for decades do not know what causes ME/CFS (though each researcher may have their own theories and hypotheses).

Thank you for the apology. I apologize if I offended you, that was not my intention.

Respectfully, how do you know that NOBODY knows what caused their CFS? I don't think you can, it's your opinion. Which you are fully and completely entitled to but you can't know as a fact, that nobody knows, it's your opinion. Just as how I feel about what caused my CFS is my opinion.

I feel quite certain I know what is causing mine. Am I 100% certain, without any doubt, no, not yet. If I fully recover from my ongoing treatment, I will be even more certain though.


Jim

 

[Hip]

Respectfully, how do you know that NOBODY knows what caused their CFS? I don't think you can, it's your opinion.

It comes down to the concepts of fact vs belief.

People are free to believe what they like. But that does not mean what they believe is factually correct. In order to prove something is factually correct, you need to provide evidence, as may be obtained from a study, an investigation or an observation (what is known as empirical evidence).

You may say you know exactly what is causing your ME/CFS, but unless you can support your assertion with a study, an investigation or an observation, ie empirical evidence, it's not really a fact. It's merely a belief. And a belief without evidence does not mean much. Some people believe the world is flat; that does not make it true.

In your case you say that you do not believe your ME/CFS involves viral infection. Well, that's you belief, but to verify that factually, you would first have to be tested by an ME/CFS specialist for all the viral infections known to be linked to ME/CFS, and only if you came back negative for all would you be able to say with reasonable certainty that no infection is involved (but even here you cannot be completely sure, as not all infections are currently detectable). That is an example of using empirical evidence to verify something factually.

@Hip, are these proposed ongoing low-level infections stable for many years? I feel that it's unlikely for a viral infection and the body's response to it to remain stable for that long.

In the case of the non-cytolytic enterovirus infections found living inside cells in the muscles and intestines of ME/CFS patients, these infection are long-term, low-level stable infections. They are the known cause of chronic coxsackievirus B myocarditis, which involves a chronic non-cytolytic enterovirus infection of the heart muscle.

Non-cytolytic enterovirus infections do not produce any viral particles, and they live inside human cells on a long term basis, as an intracellular infection. That makes them quite different to regular enterovirus infections.

 

[ljimbo423]

Jim said:

Respectfully, how do you know that NOBODY knows what caused their CFS? I don't think you can, it's your opinion.

Hip said:

It comes down to the concepts of fact vs belief.

Do you have facts that prove NOBODY knows what caused their CFS?

People are free to believe what they like. But that does not mean what they believe is factually correct.

Can you prove that my opinion is factually wrong? No, it's your opinion.

My personal feeling is that everyone is entitled to their opinion or point of view, without having to prove it factually. Sometimes I disagree with there opinion but I still feel that they have a right to whatever point of view they have.

I heard someone once say "Do you want peace or do you want to be right". I prefer peace.

I'm going to end this discussion here because I have derailed this thread more than I feel comfortable with-sorry @Martial.

Jim

 

[Hip]

Do you have facts that prove NOBODY knows what caused their CFS?

Yes I do. Here is what the Mayo Clinic says:

The cause of chronic fatigue syndrome is unknown, although there are many theories — ranging from viral infections to psychological stress.

Please feel free to check dozens of other authoritative sources on ME/CFS. You will find the same statement: the cause of ME/CFS is unknown, though many theories have been proposed.

 

[ljimbo423]

Yes I do. Here is what the Mayo Clinic says:

Please feel free to check dozens of other authoritative sources on ME/CFS. You will find the same statement: the cause of ME/CFS is unknown, though many theories have been proposed.

The cause of CFS is unknown in there opinion. Just because they haven't put the pieces together, doesn't mean that nobody else on the planet has.

There are many people like Mark Hyman and other functional medicine doctors that have recovered from their CFS and are now helping others to do the same. He KNOWS what caused his CFS.

They have learned what caused their CFS and turned it around. So it's a matter of who you want to believe. The people that have beaten their CFS or the people like the CDC etc, that are still clueless.

I know 2 people in the last year or so, that I have been in direct contact with, that both recovered from their CFS from treating dysbiosis and leaky gut. Both are now fully recovered and living full lives.

I think you will have a very difficult time telling them they don't know what caused their CFS. Also Ken lassesen, who has recovered 3 times treating his gut. He also KNOWS what caused his CFS, and is fully recovered.

 

[Martial]

Regardless of what unknown cause could be a factor for ME/CFS it seems people do manage to recover finding whatever means ends up working for them. Every case seems a lot different and unique as well, aside from a few hallmark symptoms everyone seems to share.

in terms of intracellular infectious organisms, the one I have commonly heard of in chronic infection is Mycoplasma. Thankfully that is a more manageable bacteria to treat. I wonder what kind of treatments would be used in the case of long term entereo virus cells that became embedded in cells.

 

[Hip]

The cause of CFS is unknown in there opinion. Just because they haven't put the pieces together, doesn't mean that nobody else on the planet has.

Ahh right, so all the world's scientific and medical experts in ME/CFS say they do not know the cause of ME/CFS, but you reckon you've outsmarted them, and have figured it all out all from within your own living room.

Shall we notify the Nobel Prize Committee, and let them know that you have the answer, because any person who figures out the cause of ME/CFS will certainly be awarded the Nobel prize for medicine?

I know 2 people in the last year or so, that I have been in direct contact with, that both recovered from their CFS from treating dysbiosis and leaky gut. Both are now fully recovered and living full lives.

I think you will have a very difficult time telling them they don't know what caused their CFS.

I don't think you quite appreciate what it takes to identify the cause of a disease. It's not the Mickey Mouse exercise you seem to think it is.

ME/CFS patients have taken antivirals for herpesvirus infections and have gone into remission; but that alone does not prove that herpesvirus causes ME/CFS. It requires a lot more scientific research to assign cause.

 

[Hip]

I wonder what kind of treatments would be used in the case of long term entereo virus cells that became embedded in cells.

There are not any good antivirals for enterovirus, so Dr John Chia pioneered a treatment using the immunomodulator oxymatrine, which stimulates the antiviral immune response, and this can help fight off enteroviruses.

Dr Chia says 25% of ME/CFS his patients with chronic enterovirus infections will make major improvements on ME/CFS. So this is worth trying if you have enterovirus-associated ME/CFS.

For those with herpesvirus-associated ME/CFS, the antivirals Valtrex and Valcyte have proved effective in clinical studies.

 

[percyval577]

Hi guys I used to post here quite a bit when I first got sick back around 2013. Since then I found out I had a serious case of Lyme disease and some co infections that I went to treat with a local LLMD. I eventually got on the Buhner healing lyme protocol and did very well with it.
...
My understanding is CFS/ME can have times of re activating certain infections which the person carries because there immune system is unable to handle it. And those infections or viruses can be spread. But those same infections and viruses are just as common in normal public. And the actual chronic long lasting condition itself cannot be spread.

I am too offset to write sensible quit short termed, but the three following articles are easy to connect, what has not been done so far.
Two of them are showing the same (its a proof).

- Aguirre, Clark et al 2013 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3605662/
"Not only is iron low, but we show here that B. burgdorferi has the capacity to accumulate remarkably high levels of manganese.", Abstract
"B. burgdorferi SodA activity requires exceedingly high levels of intracellular manganese." Discussion
"two times of magnitude more" than yeast (which contains already a bit higher amounts). Somewhere there.

When Borrelia divide they will release some of this manganese into the bloodstream, won´t they?
What will happen?

- Fillipov, Seegal et al. 2005 https://www.ncbi.nlm.nih.gov/pubmed/15601679
"In the absence of LPS, Mn moderatley increased interleukin-6 and tumour necrosis factor alpha (TNF-alpha) production only at higher Mn concentrations, which were cytotoxic. At all LPS doses, however, proinflammatory cytokine production was dose-depently increased by Mn. Similarly, LPS-induced NO production and iNOS expression were substantially enhanced by Mn."

- Chen, Ou et al. 2006 https://www.sciencedirect.com/science/article/pii/S0197018606000295
"Within the assayed concentration, manganese was unable to induce tumour necrosis factor alpha (TNF-alpha) and inducible nitric oxide synthase (iNOS) expression, whereas it potentiated iNOS and TNF-alpha gene expression by lipopolysaccharide/interferon-gamma-activated glia cells. The enhencement was accompanied by elevation of free manganese, generation of oxidative stress, activation of mitogen-activated protein kinases, and increased NF-kappaB and AP1 binding sites. The potential degradation of inhibitory molecule IkappaB was one of the underlying mechanisms for the increased activation of NF-kappaB by manganese."

This might be a catastrophe for the being, resulting in effects of to much NO (on a lot of nerves most importantly I think.)


Your immunesystem might remember some pathogenes coming from the guy and liked to produce a lot of NO again. This is possible, isn´t it?
You could check it out by avoiding beans and other manganes-rich foods. You should improve over some (extented) time, if this connection would be right.

(I don´t feel much heavy anymore, my soul is flipping (around). Nickel could be a counterpart to search for - but with care -, speeding up the process, hopefully.)​

Ahh right, so all the world's scientific and medical experts in ME/CFS say they do not know the cause of ME/CFS, but you reckon you've outsmarted them, and have figured it all out all from within your own living room.

Partly it would be memorizing high manganese levels. Si.
Smaller hope furthermore: The immunesysteme would need some amount of infection (to produce some basic level of NO) however it would be preserved and proceeded.

 

[Martial]

I am too offset to write sensible quit short termed, but the three following articles are easy to connect, what has not been done so far.
Two of them are showing the same (its a proof).



Your immunesystem might remember some pathogenes coming from the guy and liked to produce a lot of NO again. This is possible, isn´t it?
You could check it out by avoiding beans and other manganes-rich foods. You should improve over some (extented) time, if this connection would be right.

(I don´t feel much heavy anymore, my soul is flipping (around). Nickel could be a counterpart to search for - but with care -, speeding up the process, hopefully.)​

Interesting, thanks for the heads up. I definitely am feeling the effects of my older lyme symptoms right now. And even herxed when bumping up my herbs. Feels like maybe I might have just gotten unlucky enough to get reinfected. Either way. Just gonna have to treat it the same way.

Having chronic illness like this is really frustrating sometimes. I really thought I had all this behind me and have been feeling mostly well these last couple years. At least people are much more supportive and understanding this time around. No longer telling me you are just anxious, just don't think about it. Even some doctors and a therapist said it was just anxiety. I have a sleep apnea issue due to obstruction I have to work on fixing though. That might have hindered my recovery the first time or contributed to relapsing. Can't stay well and healthy if you aren't getting proper sleep.

 

[percyval577]

Even some doctors and a therapist said it was just anxiety.

Especially doctors are telling me I would be overcautious. And if I answere they wouldn´t be cautious in respect of my difficulties they would say, "I know, everything sticks well together, don´t bother."

PS: If you are not too bad you might do some smaller HIIT before sleeping. This had helped me very well some periods. (Nowadays I sleep well enough, but HIIT would not be helpful, as complex as it is.)​

 

[wastwater]

The cluster outbreaks were where me/cfs etc took its names from
What percentage of the whole ME folks are part of a cluster outbreak overall
Less than 1 percent maybe (a guess)
Does that make cluster outbreaks a rare anomaly now

 

[matt321]

Perhaps you can remove the word flare or remission with "relapse". Try using this word for a while and see where to takes you.