CFS is a metabolic condition!

[Sushi]

And oddly, some of us have over-the-top NK cell function?!

Sushi

 

[Elph68]

Not disputing the viral and other triggers, but a virus usually either kills the host or gets entirely defeated by the body and in most cases completely expelled. There are exceptions such as HIV which mostly progresses slowly or some that stay latent and can flare up such as various members of the herpes family. However, even when they flare up, it is usually acute, with herpes you get sores or with VZV you may get shingles much later after having chickenpox, but they mostly stay dormant/latent and do not interfere much with the body. There are some exceptions to this, but the reactivations (which are still very much debated) could be of opportunistic nature and not the cause. Bacteria though have a much better profile to interfere with the body on a persistent basis, by forming colonies, films that prevent penetration of cell walls and developing resistencies to antibiotics, and causing structural damage to tissue (via H2S and H2O2 production) and blockages. And whenever a strong viral onslaught (such as EBV) or trauma (surgery etc.) brings the defenses down, it may be possible that those pathogens disseminate from their usual habitat (where they do not pose much of a threat) and then wreak havoc where they naturally shouldn't be (gut, lymphatic system, etc.). Also we all assume an infectious nature which is really pretty certain at this point, but it is also striking that the genetic abnormalities/predispositions are so hard to find. I think they exist but probably won't fully explain why some get really sick and others don't, simply because it could be a case of bad luck of a perfect storm onto the immune system, even for people that don't exhibit genetic abnormalities. And even if it is a virus or a host of viruses that somehow exhibit low serum levels, why all the serum studies and so little to none tissue samples?

Hey Mellster, I am considering an accumulative effect .... What if it is an accumulation of these bacteria species having the same affect .... The body can handle 1 or 2 species but when hit with 4 or more species ... That tips it over and the damage is accelerated and uncontrollable .......

Pathogenic normal flora .... The undetectable infection ...

 

[Gingergrrl]

Pathogenic normal flora .... The undetectable infection ...

@Elph68 I know this may be a complex question, but I don't understand what you mean by the undetectable infection. Even if someone had multiple infections (i.e. EBV, HHV-6 and five others) couldn't they all be detected by testing? Also, when you say "flora" does that mean in the mouth/throat or stomach or elsewhere?

 

[manna]

@Elph68 I know this may be a complex question, but I don't understand what you mean by the undetectable infection. Even if someone had multiple infections (i.e. EBV, HHV-6 and five others) couldn't they all be detected by testing? Also, when you say "flora" does that mean in the mouth/throat or stomach or elsewhere?

i was lookming into pneumonia and other infections a few years ago and was surprised to find out how difficult it was to even test for and diagnose some well known, and potentialy deadly, diseases. it seems that physical manifesations, and exclusion, are used to diagnose as much as lab tests showing infection...which, apparently, can be ambiguous at best.

 

[Elph68]

@Elph68 I know this may be a complex question, but I don't understand what you mean by the undetectable infection. Even if someone had multiple infections (i.e. EBV, HHV-6 and five others) couldn't they all be detected by testing? Also, when you say "flora" does that mean in the mouth/throat or stomach or elsewhere?

Hi Ginger, an infection is an overgrowth of known pathogens. The undetectable infection is not necessarily an overgrowth, just having them there could be causing grief. They are undetectable because the pathologist classes them as normal flora so they are ignored. Flora is the bacteria found anywhere on the body including the skin, nose, throat, genitals, bowel etc.

If you get 5 species of bacteria acting in the same way, then it is an infection, but it is undetectable, because the bacteria are considered harmless when they are on their own ......

 

[MeSci]

Hi Ginger, an infection is an overgrowth of known pathogens. The undetectable infection is not necessarily an overgrowth, just having them there could be causing grief. They are undetectable because the pathologist classes them as normal flora so they are ignored. Flora is the bacteria found anywhere on the body including the skin, nose, throat, genitals, bowel etc.

If you get 5 species of bacteria acting in the same way, then it is an infection, but it is undetectable, because the bacteria are considered harmless when they are on their own ......

I don't recognise your definition of infection.

There are perhaps better definitions here:

There is a number of definitions on that page, the first one being:

1. invasion and multiplication of microorganisms in body tissues, especially that causing local cellular injury due to competitive metabolism, toxins, intracellular replication, or antigen-antibody response.
2. an infectious disease.
airborne infection one that is contracted by inhalation of microorganisms or spores suspended in air on water droplets or dust particles.
droplet infection infection due to inhalation of respiratory pathogens suspended on liquid particles exhaled by someone already infected (droplet nuclei) .
endogenous infection that due to reactivation of organisms present in a dormant focus, as occurs in tuberculosis, etc.
tunnel infection subcutaneous infection of an artificial passage into the body that has been kept patent.
opportunistic infection infection by an organism that does not ordinarily cause disease but becomes pathogenic under certain circumstances (e.g., impaired immune responses).

There is a very good definition further down the page, with illustrative Figures.

 

[Leopardtail]

@Dr.Patient,
Have you looked into dysautonomia as a cause of your symptoms? Have you done the 2-day CPET (or even the std CPET) yet to see if you have the abnormalities generally found in ME patients?

If ME is not infectious or immunological, how do you explain the immune abnormalities and multiple intracellular pathogens commonly found in well-characterized patients? Or are you referring to chronic fatigue, the symptom of many different disorders, rather than ME the WHO-designated neurological disease?

Have you read Myalgic encephalomyelitis: International Consensus Criteria aka the ICC definition? The abstract starts:


It goes on to say:


While there is general consensus that ME/CFS includes impairment of cellular energy metabolism, the idea the it is only a metabolic disorder is now largely outdated. The idea that ME/CFS is
has been largely overcome by research and expert clinical experience.

This one is fairy simple to answer. The immune system is highly demanding of energy hence if Mitochondria are now working well (or any other aspect of energy generation) then one would expect problems to occur. Other energy deficit illnesses (e.g. diabetes) also feature immune dysfunction.

Once you start poking around in cells, and at enzymes, the extent to which everything is interconnected and cyclic becomes much higher than in inter-organ function. Various hormones however are also involved in regulating the immune system including both Melatonin and Vitamin D.

The statement that 'it cannot be exclusively metabolic' could be taken as either true because so many systems are affected, or a bit brave since the only way to disprove it is to supplement energy (ATP) which is not possible. I would point out thought that one cannot claim with certainty the ME is exclusively any particular system or dysfunction, were that the case then we would have a clear etiology and a probable cure.

The level of exhaustion (fatigue is as silly word to use in my view) in ME is so great that it surpasses pretty much every other disease, hence I would be inclined to agree with the simple common sense view expounded that it must be metabolic irrespective of the cause. Compare it with Type I diabetes in which the cause is auto-immune but the havoc and the treatment are both metabolic.

 

[Leopardtail]

Diabetes, both type 1 and type 2, are metabolic disorders, with the cause of type 1 being a viral infection or something else that damages the pancreas, whereas type 2 has varying causes, the most well studied being being obesity. Neither are inborn. There are definitely heritable risk factors for type 2 diabetes though. I am unsure about type 1.

Indeed I consider type 2 diabetes to be a syndrome. There are multiple layers of problems within it, all part of feedback loops. The low hanging fruit was obesity, but there are huge numbers of skinny type 2 diabetics.

Several genes were identified in type I diabetes a couple of decades ago Alex, hence the higher familial incidence.

 

[Leopardtail]

Thank you for this! I was in the middle of reading the three papers of Dr.Myhill when your msg came. It seems to make sense, but why is the ATP profile not offered routinely to patients in the US?

It's not offered routinely anywhere because psychotic psychiatrists have dominated the debate (poor deliberate pun).
It needs saying though that the Myhill papers strongly show mito dysfunction, but have not definitively shown what causes the dysfunction, what makes us more vulnerable etc. That needs wider scale research by more people. Newton et al have also shown greater lactic acid production in muscle. The biggest issue is that funding has gone from being primarily psychiatric to primarily immune for research. One dogma has been replaced by another despite mito based research showing better results. You should also check Titelbaum's research on Ribose (replicated at the university of Leeds but not published).

 

[Leopardtail]

Have you taken into consideration that a number of the culprit viruses are mostly tissue-based in the chronic stages and therefore have very low serum levels? Many studies only used basic tests that wouldn't detect tissue-based infections and/or very low level serum levels.

I won't be surprised if the culprit is bacterial, viral, fungal, or simply a genetic immune abnormality. I don't think we have anywhere near enough evidence to rule out any of those possibilities.

Agreed, but equally if you have immune dysfunction, one can't rule out more being present simply because the immune system cant cope with them. Some people are made very ill by Lyme/Mono others aren't hence whether those dieaseases are genuinely infectious or simply triggers is equally debatable especially given their close symptomatic correlation with ME.

 

[Leopardtail]

Thank you for that info! Just wondering why that doesn't translate into standardized testing for all patients...

Because no single Enterovirus is universally present. But mainly because a handful of psychiatric crackpots dominant the medical press and governmental regulation.

 

[Leopardtail]

@Elph68 I know this may be a complex question, but I don't understand what you mean by the undetectable infection. Even if someone had multiple infections (i.e. EBV, HHV-6 and five others) couldn't they all be detected by testing? Also, when you say "flora" does that mean in the mouth/throat or stomach or elsewhere?

Doctors only consider an infection 'detected' if over a certain number of a single infection are present. Also they more usually detect infection by looking for a single type of Antibody - meaning if you immune system is not working well their tests fail.

 

[Gingergrrl]

Thank you for all the detailed responses to my question to @Elph68 and I wish I had a more scientific background so I could grasp it all. It sounds like you are saying the tests fail b/c most doctors either say "The antibodies are from a prior infection and found in 90% of the population blah, blah, blah" or someone's immune system is too compromised to even create the antibodies. Is that correct?

As for the ATP/Mito profile, is that something that Dr. Myhill is standardly testing in Britain but the U.S. is just not offering it? My ND ordered some kind of Mito test kit for me that is taking forever to arrive. I see her this Tues and am hoping it is now here so I can do the test and let you guys know what it is called.

 

[Leopardtail]

Thank you for all the detailed responses to my question to @Elph68 and I wish I had a more scientific background so I could grasp it all. It sounds like you are saying the tests fail b/c most doctors either say "The antibodies are from a prior infection and found in 90% of the population blah, blah, blah" or someone's immune system is too compromised to even create the antibodies. Is that correct?

As for the ATP/Mito profile, is that something that Dr. Myhill is standardly testing in Britain but the U.S. is just not offering it? My ND ordered some kind of Mito test kit for me that is taking forever to arrive. I see her this Tues and am hoping it is now here so I can do the test and let you guys know what it is called.

it may be the same test, myhill offers it internationally.

 

[Elph68]

I don't recognise your definition of infection.

There are perhaps better definitions here:

There is a number of definitions on that page, the first one being:



There is a very good definition further down the page, with illustrative Figures.

We will just have to agree to disagree MeSci.

The medical profession has it wrong!

An undetectable infection is one that does not fit within the current medical definitions nor current pathology tests...

Pathogenic normal flora that cause chronic and debilitating disease .... is the undetectable infection!

 

[Elph68]

Doctors only consider an infection 'detected' if over a certain number of a single infection are present. Also they more usually detect infection by looking for a single type of Antibody - meaning if you immune system is not working well their tests fail.

thank you leopard tail ..... Mixed species, acting in the same way causing disease is the same result of one species becoming dominant and causing disease .... that is why it is undetectable .....

 

[Gingergrrl]

it may be the same test, myhill offers it internationally.

@Leopardtail I think my ND was not familiar with Sarah Myhill when I mentioned her and that this is a different test but I really am not sure.

 

[MeSci]

We will just have to agree to disagree MeSci.

The medical profession has it wrong!

An undetectable infection is one that does not fit within the current medical definitions nor current pathology tests...

Pathogenic normal flora that cause chronic and debilitating disease .... is the undetectable infection!

I don't dispute the likelihood that some infections are impossible to detect using standard tests. This has been widely discussed on Phoenix Rising.

What I was questioning was your definition of an infection as being "an overgrowth of known pathogens" (my bolding). It is very frequent that the pathogen is unknown. And of course tests do not always identify them. But they are still infections.

 

[Leopardtail]

I don't dispute the likelihood that some infections are impossible to detect using standard tests. This has been widely discussed on Phoenix Rising.

What I was questioning was your definition of an infection as being "an overgrowth of known pathogens" (my bolding). It is very frequent that the pathogen is unknown. And of course tests do not always identify them. But they are still infections.

perhaps overgrowth of known microbes (e.g. candida) might be a better description? Where medics don't consider them harmful, but this ceases to be true with overgrowth, thus crossing the gap between benign and pathogenic?

 

[Elph68]

I don't dispute the likelihood that some infections are impossible to detect using standard tests. This has been widely discussed on Phoenix Rising.

What I was questioning was your definition of an infection as being "an overgrowth of known pathogens" (my bolding). It is very frequent that the pathogen is unknown. And of course tests do not always identify them. But they are still infections.

Well MeSci, regardless of whether my interpretation of infection is correct or in line with the medical process robots, different species of 'normal flora' bacteria, acting in the same way, causing chronic disease is an undetectable infection in today's medical system ....

And by the way, my experience to date with the medical profession that you hold in so high regard ... Has not been great!! I am being sued by an infectious disease specialist, a urologist, 2 gp's and the pathologists for defamation ... I have publicly accused them of misdiagnosis, and for racketeering ....

I told them to bring it on!!! It is going to be very public!!!

This disease is caused by (in some/most cases) different strains of normal flora acting in the same way (crossing the mucosal barrier) and interacting directly with the immune system, causing chronic disease .... The undetectable infection ......