What are all the theories of what causes ME CFS?

[lenora]

After having been "diagnosed" with this for 40 years, and brain and spinal cord surgery on top of it all, there is still no definitive answer and in all honesty, I'm not so sure there ever will be.

This doesn't mean that you and others should give up hope....not at all. We can/do become liable for attack by viruses and then in later years, it seems that we're in a much better place (I'm 74). I was born with genetic defects, wore casts and braces during my growing up years but always had to walk....a lot. I credit the latter with giving me what I have today. I look normal, but really can't do anything except be kind to my husband and children and take care of myself.

I've been through the very worst this illness has to offer, one virus after the other, after the other, and personally, I think it's the constant invading of a still-developing immune system (not necessarily in childhood only) that can only take so much. Anything added to that only makes things worse.

People can and do recover some of their lives, but why? That's a big unknown. Overdoing it is easy to achieve, talking....we need a lot of alone time and that can be hard on our loved ones. I can walk around a store (I live in a hot climate) for 15 min. and suddenly the energy just leaves my body, I can almost feel it float out via my feet.

Changes have occurred over the years....things that were once visible are now gone (pressure points that were lumps for e.g.), really large lymph nodes...gone, for the most part. But other things have replaced them. I don't particularly dwell on the why's, etc., any longer. I know that some excellent researchers are hard at work for you younger people...and that's good enough for me. I'm always interested in their conclusions.

I've tried all of the vitamins, supplements and herbs available or that were recommended to me. Have they helped? Well, perhaps giving me more energy, but apart from that....no. I was involved with setting up groups even before the Internet (think back to AIDS and the Lake Tahoe "mystery.") I've read the books written, I've followed as much research as possible. I've decided to leave it all to minds greater than mine. Should you do the same: You're new and have more of an interest and energy to devote to this than I do now, so investigate and go for it. It's your life and if you have some spare change, we really need it for research. Good luck as you travel the path and always have hope. Yours, Lenora.

 

[Hip]

how likely could this be legit ?

Are you referring to Dr Igor Markov's chronic bacterial intoxication syndrome (CBIS) theory of ME/CFS, where he postulates that ME/CFS is caused by bacterial toxins entering the systemic bloodstream from a bacterial dysbiosis in the kidney?

I find Dr Markov's CBIS theory very interesting, especially since he also says that treating the kidney bacterial dysbiosis leads to a permanent cure of ME/CFS. His own clinic claims a 93% success rate in permanently curing ME/CFS by using autovaccines to treat the kidney dysbiosis. Unfortunately treatment takes time, 2 to 3 years for patients to reach full remission. Though he says you should see improvements within the first year.

One of the reasons I find the CBIS theory of ME/CFS intriguing and plausible is that at present, medical science has very little ability to detect bacteria toxins in the blood. For the most well-known bacterial toxin, lipopolysaccharide (LPS), there are now commercial lab tests which can measure blood levels.

But LPS is just one out of hundreds of different very pernicious toxins that bacteria will synthesis and secrete, and we do not have much in the way of blood tests which can detect these many other toxins.


So basically, as far as I am aware, medical science has a major blind spot when it comes to detecting bacterial toxins in the blood. So these toxins may have been present in ME/CFS patients all the while, but we have not developed the right blood tests to detect them.

Dr Markov was able to detect high levels of bacterial toxins in the blood of ME/CFS patients using a unique bacterial toxin test developed in the Ukraine. He finds without exception, all ME/CFS patients have these toxins in their blood.

These toxins Markov finds could be one in the same as the "something in the serum" that various ME/CFS researchers (Fluge & Mella, Ron Davis, Bhupesh Prusty) have found in ME/CFS blood, that negatively effects healthy cells in vitro, when those cells are exposed to a drop of ME/CFS patients' blood.

 

[Rufous McKinney]

You might get completely contradicting results by looking at PEM vs. well paced patients outside of PEM.

I think this is a huge issue. We have so much chaotic body chemistry. the time of day matters. I really think so, so imagine generating low levels of variation in a study, with us as study victims.

 

[Rufous McKinney]

anxiety disorders can exist, but they do not explain the translation from psychological stimulus to physiological disease. On the contrary, the vagus nerve causes anxiety.

I did experience an entirely psychologically generated severe "pain" which my body produced. Not an "illness" but a symptom.

Details:

I observed that its entirely possible for the body to manifest a severe "pain", in my case, protesting a scheduled dental implant.

My body refused. So it showed its refusal, by coming up with a horrible intestinal pain that lasted for many days. It was so severe I was putting a hot water bottle on it for hours and gave myself heat rash.

I'd never felt this pain before like this, or ever since.

So I cancelled the surgery, and the pain left 2 days later.

Why the refusal? well the surgeon refused to accept my ME medical history and abused me verbally in his office.

So the idea that I would return there, my body refused.

And there is no bathroom in the office. That literally, my body could not handle. I am very ill every morning for hours, visiting the bathroom. So an 8 am surgical procedure with out a bathroom in the office....my body views this as an impossibility.

it flat out refused, and that was the route it found to do so.

 

[Rufous McKinney]

what PEM is. Why it occurs after looking at the phone when you're very severe.

phone really makes me feel more ill really quickly. Holding it, focusing on it if its a video chat (often is, my grandaughter), I often get PEM the next day if the call is very long. And I don' t do that much of the talking

Looking down holding it- wow my neck and head just go off. So it exacerbates something CCI in my case, usually I"m sitting up, and I have tons of eye troubles/Sjogrens. So the eye strain factors in too.

the electromagentics affects my hand..nerves and veins...

 

[Rufous McKinney]

PEM can hit like a stroke.

the abrupt running out of energy can hit like a stroke.

But PEM? I think of it as "slighly" different. Sometimes I will have stroke-like run out of energy moments but then don't really have much PEM the next day.

 

[Rufous McKinney]

any that talk about Sickness Behavior

I think sickness behavior is powerful, but responding to the off chemistry, not causing it. However, its a route to find treatments, in that when we lesson the "sick" feeling, we feel better.

Feeling better is nice.

 

[hapl808]

The PEM is bizarre to me. For years before I really even believed CFS (I couldn't accept a 'disease' with no proven pathophysiology and no known treatments), I always complained that a visit to the doctor or attempting to go out even in a wheelchair would leave me bedbound for many days or weeks. Amazing that no one insisted on a CFS diagnosis, since the PEM I was describing is pretty indicative. But even know, I can't wrap my head around how an enjoyable phone call in a comfortable position with a low heart rate will trigger migraines and acid reflux and incredible muscle weakness and pain and just that general flu or poisoned feeling that people describe. Why the delay? I feel really good after the phone call, then 12-24 hours later the PEM arrives. Some supplements seem to help and I am trying to combine as many as possible to stave off those effects to some degree, but it's incredibly frustrating.

 

[Rufous McKinney]

just that general flu or poisoned feeling that people describe. Why the delay? I feel really good after the phone call, then 12-24 hours later the PEM arrives.

somethigm chemical is produced, and then circulates.

I figure its

1) gut leaks. (gut defences ran out of energy)
2)BBB leaks
3)lactate, LPS, ROS, drip drip we feel sicker as cells respond to this dump plus all the other body chemicals misfiring....hormones, cytokines, etc from immune sytem, and the somethings in our blood (which we will someday be able to filter out, to feel less ill).

4) toxins not leaving the body

Key to this entire swarm of symptoms is energetics. The body is in a dessicated state, which causes blood stagnation, lymph stagnation. Cleansing the brain is impaired, both via an impaired sleep cycle, AND this DRIED out condition, which is tripping up most body processes.

I don't produce the proper tears, my eyes are dried out, my throat, my tongue, my sinuses my lungs.
So this not going with the flow affects our messaging system via connective tissue and collagen.

 

[livinglighter]

Currently I think ME/CFS is a form of stress injury disorder (i.e., surgery, a traumatic accident, child birth, the death of a loved one, viral/bacterial infection, toxin exposure, prolonged phycological trauma eg. warzone living).

My current top theories are;

• Mackay-Tate hypothalamus hypothesis (Mackay A, Tate WP)
• Immune hyper response causing prolonged raised cytokine expression resulting in PEM

 

[Pyrrhus]

The reactivation as PEM doesn't convince me bc it happen far too quickly. PEM can hit like a stroke. No virus can replicate so fast.

The speed of viral replication depends upon many factors: the type of virus, the type of cell it has infected, whether the virus is in an acute phase or in a persistent phase, and other factors.

But when conditions are right, a single RNA virus can generate thousands of copies of itself in just a few minutes.

 

[Martin aka paused||M.E.]

But when conditions are right, a single RNA virus can generate thousands of copies of itself in just a few minutes.

Right but does it last for a crash where the whole body stops working? I think we should also look here at there very severe ones

 

[lenora]

The PEM is bizarre to me. For years before I really even believed CFS (I couldn't accept a 'disease' with no proven pathophysiology and no known treatments), I always complained that a visit to the doctor or attempting to go out even in a wheelchair would leave me bedbound for many days or weeks. Amazing that no one insisted on a CFS diagnosis, since the PEM I was describing is pretty indicative. But even know, I can't wrap my head around how an enjoyable phone call in a comfortable position with a low heart rate will trigger migraines and acid reflux and incredible muscle weakness and pain and just that general flu or poisoned feeling that people describe. Why the delay? I feel really good after the phone call, then 12-24 hours later the PEM arrives. Some supplements seem to help and I am trying to combine as many as possible to stave off those effects to some degree, but it's incredibly frustrating.

I think just "thinking" is enough to trigger PEM, especially after a long day. Sometimes it passes faster than at others. Just the tone of someone's voice (not anyone in my family) is enough to do it....and that I put down to thinking. I don't answer or take phone calls after about 3:00 p.m. unless it's a family member. Too exhausting. Yours, Lenora.

 

[lenora]

Currently I think ME/CFS is a form of stress injury disorder (i.e., surgery, a traumatic accident, child birth, the death of a loved one, viral/bacterial infection, toxin exposure, prolonged phycological trauma eg. warzone living).

My current top theories are;

• Mackay-Tate hypothalamus hypothesis (Mackay A, Tate WP)
• Immune hyper response causing prolonged raised cytokine expression resulting in PEM

Hello @livinglighter.....I wouldn't even attempt to make a guess as to what causes what any longer. I think this problem is far more complex than even most of us are aware. It's a quandary to be sure. Yours, Lenora.

 

[Wishful]

But I still can't explain what PEM is.

From my experience, PEM is neurological, and probably involves glial cells. Cognitive exertion could trigger my PEM within an hour (variable delay). Physical exertion had a consistent 24 hr delay before triggering the same symptoms. Physical exertion is known to increase IFN-g 24 hrs later, which in turn activates glial cells. Cognitive exertion could possibly trigger the same activation of glial cells, with a much shorter delay.

 

[Martin aka paused||M.E.]

From my experience, PEM is neurological, and probably involves glial cells. Cognitive exertion could trigger my PEM within an hour (variable delay). Physical exertion had a consistent 24 hr delay before triggering the same symptoms. Physical exertion is known to increase IFN-g 24 hrs later, which in turn activates glial cells. Cognitive exertion could possibly trigger the same activation of glial cells, with a much shorter delay.

Possible... But why are we weaker then, sickness behavior response? That would the ting I would like to add to your explanatory model.

 

[lenora]

It's possible that glial cells are somehow involved, but how many other things make up this whole? I don't discount anything at this point. Yours, Lenora.

 

[Wishful]

But why are we weaker then, sickness behavior response?

Possibly. PEM certainly made me want to hide in my burrow until I felt better.

I had to check the Mackay-Tate hypothalamus hypothesis, to remind myself what it was. One thing not mentioned in that article and thread was specialized glial cells located in or connected to the hypothalamus. Tanycytes and pituicytes.

"The hypothalamo-hypophyseal system is supplied with two types of specialized glial cells that interact in neuroendocrine functional dynamics: the tanycytes and the pituicytes. ... Release of hypothalamic hormones is apparently influenced by pituicytes and tanycytes."

These are specialized cells highly localized and, I assume, probably not well-studied. They are also very powerful in terms of effects on the body. What if there's a comparatively minor dysfunction in these cells, possibly forming a feedback loop that locks them into the abnormal mode?

 

[kjes22500]

Are you referring to Dr Igor Markov's chronic bacterial intoxication syndrome (CBIS) theory of ME/CFS, where he postulates that ME/CFS is caused by bacterial toxins entering the systemic bloodstream from a bacterial dysbiosis in the kidney?

I find Dr Markov's CBIS theory very interesting, especially since he also says that treating the kidney bacterial dysbiosis leads to a permanent cure of ME/CFS. His own clinic claims a 93% success rate in permanently curing ME/CFS by using autovaccines to treat the kidney dysbiosis. Unfortunately treatment takes time, 2 to 3 years for patients to reach full remission. Though he says you should see improvements within the first year.

One of the reasons I find the CBIS theory of ME/CFS intriguing and plausible is that at present, medical science has very little ability to detect bacteria toxins in the blood. For the most well-known bacterial toxin, lipopolysaccharide (LPS), there are now commercial lab tests which can measure blood levels.

But LPS is just one out of hundreds of different very pernicious toxins that bacteria will synthesis and secrete, and we do not have much in the way of blood tests which can detect these many other toxins.


So basically, as far as I am aware, medical science has a major blind spot when it comes to detecting bacterial toxins in the blood. So these toxins may have been present in ME/CFS patients all the while, but we have not developed the right blood tests to detect them.

Dr Markov was able to detect high levels of bacterial toxins in the blood of ME/CFS patients using a unique bacterial toxin test developed in the Ukraine. He finds without exception, all ME/CFS patients have these toxins in their blood.

These toxins Markov finds could be one in the same as the "something in the serum" that various ME/CFS researchers (Fluge & Mella, Ron Davis, Bhupesh Prusty) have found in ME/CFS blood, that negatively effects healthy cells in vitro, when those cells are exposed to a drop of ME/CFS patients' blood.

yes, i find it very intresting too, but i can't see what proves the disbyosis comes from the kidney and not the gut in his work.

in my case the poisonned feeling appears in the morning and ends in late evening , but kidneys are working 24/7 so in theory it should poison me all the time with biotoxins.

while i can imagine if it leaks from the gut it would make sense that the poisonning is not constant and you will find biotoxines in urine too, what do you think?

 

[Hip]

but i can't see what proves the disbyosis comes from the kidney and not the gut in his work.

It's the fact that he detects these bacteria in the urine, and when he targets these bacteria he finds in the urine with autovaccines, the patient's health improves, and eventually is cured.

So that's the main evidence, the fact that his treatment is keyed on bacteria in the urine.

Of course autovaccines would also work on the same bacteria if they were found elsewhere in the body, like in the intestines. But I think Dr Markov has found that his autovaccine treatment does not seem to alter the gut microbiome, but does alter the kidney microbiome (in that after treatment, these bacteria can no longer be found in the urine).


However, I think Dr Markov would admit that he cannot be 100% sure at this stage that the kidney is the culprit. The gut could also be involved.