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What is your personal theory or understanding of ME/CFS?

RYO

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From another thread:

In my opinion, another way to view ME/CFS is an alternative variation of the CDR- Cell danger response theory. Instead of the CDR, the ADR - Autonomic danger response may explain why many of our feel worse after eating a meal. An insult or trigger such as a viral illness, bacterial infection or toxin exposure may trigger an autonomic danger response but ME/CFS may be a manifestation of perpetual autonomic danger response or autonomic danger response loop ADRL.

I often try to describe to my friends that living with this disease is like chronically fighting the flu while having a severe hangover. It is relatively easy to endure these symptoms for a week but what about years or even decades. I am not sure why more children and adolescents manifest with POTS but I suspect it may fall under the spectrum of autonomic nervous system derangement.

The challenge is figuring out what is causing this autonomic danger response loop. Many of us have read about the vagus nerve theory. Perhaps further research in this area may prove to be fruitful but I also worry that from a tissue level, the autonomic nervous systems is difficult to study (ie brain stem, spinal cord, sympathetic ganglia, autonomic nervous system of the gut.) Also what is the interplay between the immune system and autonomic nervous system.
 

RYO

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From another thread:

I recently finished reading When Breath become Air about a neurosurgeon's struggle with advanced cancer. I believe that the debilitating symptoms that occur when a patient undergoes chemotherapy may be similar to what ME/CFS patients experience. The level of actual debilitation is certainly the same. Doctors often use zofran to help nausea associated chemo. Small doses of Zofran along with analgesics help me get through my worst days. (constipation is a significant side effect of Zofran)

Zofran selectively antagonizes serotonin 5-HT3 receptors. https://en.wikipedia.org/wiki/5-HT3_receptor
"This ion channel is cation-selective and mediates neuronal depolarization and excitation within the central and peripheral nervous systems.[1]"
Wikipedia - alcohol is an agonist to this receptor.

More ramblings...
Could there be an autoantibody or certain cytokine that is acting as agonist to this or similar receptors? (Which results in making us feel poisoned?) Could research on cancer related fatigue also help ME/CFS?

Could PEM be explained as a reaction to stressor to autonomic nervous system?

Some severe ME/CFS patients have extreme intolerance to light and sound. Similarly, patients with severe hangovers from alcohol intoxication transiently suffer from light and sound intolerance.

I am read on other threads that some patients are actually helped by alcohol. I am perplexed by this but I also agree that there a different ME/CFS subsets.
 

Stretched

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IMO, with 2 - 15+ million (?) PWCs experiencing fundamentally the same illness I believe there’s got to be some common basis in the CFSME malaise or in its etiology.

First it was arguments over definitions as to what CFS entailed. Soon after the outbreak of the 80’s the possibility of an epidemic became feasible which eventually led to a couple of agreeable definitions in the early 90’s.

Like others around here I’ve had ~30 years to ruminate over the research comings and goings of definitive and causative concepts. At various points I’ve bought into one cause over another after considering the then current merits of reasoning subsequent to a previous convincing argument. The research explored various viruses to immune dysfunction, from gut disorders to brain regulation, back around to retroviruses and to mitochondrial dysfunction; ampligen to rituximab. All sounded good at the time.

What I was left with was the fact that for X years I didn’t have CFS. In fact, I was super healthy but also super stressed. Then, something happened and my body was defective with extreme tiredness and flu like symptoms. Worse still, it continued to decline over the years.

This came with the trials and tribulations with various doctors, with no satisfaction about any of the dynamics of this sickness. The only good information was as a reluctant researcher and translating a myriad of arcane journals and following up in discussions in this and other topical forums.

In coming to terms with this nefarious illness I arrived at it involving a latent virus, existing in mine and the systems of others as well, which came in contact with a catalyst, likely another virus, whose synergy affected the mechanisms of my immune system. Specifically, I think the latent virus was a common cmv virus that flared when the residual of the polio virus, injected in childhood caused a synergistic super, e.g. stealth virus to embed its DNA into other cells traveling through the immune system. (See Dr W. John Martin’ paper on CFS and CMV, American Journal ofPathology, Vol. 145, No. 2, August 1994, examining a stealth virus; later updated.
Sept 18, 2014, MedCraveonline.com, Journal of Human Virology & Retrovirology, article: Stealth Adaptation of Viruses: Review and Updated Molecular Analysis on a Stealth Adapted African Green Monkey Simian Cytomegalovirus (SCMV).)

When these transfigured cells get activated by systemic stress (of varying types) symptoms flare followed by PEM.
 
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Stretched

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For me ME/CFS was caused by overtraining at the gym at a time when I had viral and/or bacterial infections, so to sum it up, I believe it was a case of demand (on energy) being greater than supply during a time of infection so unlike regular overtraining syndrome, there was collateral damage (probably mediated by the immune system).

Edit: One thing I have always wondered is why all of my biggest crashes have resulted from using my arms to press weights...this continues to puzzle me!
At onset ~30 years ago I was in the peak of shape: running every other day, lifting weights 3x a week, and cycling ~20 miles 2 x week. Then wham, CFS hit and I immediately had to cease all the physical stressors.

I tried to start back after a month or so convalescing with sets of pushups using the
elevated hand grips for more power but I fell short half way through and ended up with severe PEM. I tried it again a couple of months later but only got a few reps in before I had to quit.

IMO, the arm/chest muscles got stressed and exponentiated the altered cell stress (see my post in this thread) which is directly linked to PEM developing. I think deep squats to a ‘burn’ will have nearly the same effect.

This was during the early years of my CFS. A little later I could do ~5miles of easy cycling and also ~ .5 mile of walking. These activities lasted about a year before I had to cut back to minimal walking and just a short set of pushups. It’s now 20 years later, I’m about 80% house bound and the same very light routine is doable but judiciously gauged, just short of causing PEM.
 
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CFS is not one disease! I want make new subgroups like CFS type 1, CFS type 2 etc...
We see problems with autonomic nervoussystem, immunesystem, energyproblems in mitochondrail and brain issues... We see a hyperstate type and a downregulation type of CFS patiënts.
I think that the parasympathetic nervoussystem is broken, so CFS is a chronic state of overdrive from the sympathetic
nervoussystem or a downstate regulation. Two types. The cause can be toxication, autoimmune or viral activation or genetic....
So would you say that its more like cfs is a spectrum of symptoms and severity? Just how autism and related diagnoses are categorised now as asd (autism spectrum disorder). It would be helpful to distinguish between cfs types I guess for better clarity. I feel that mine does fluctuate between levels of symptoms and severity over the years though. Certainly feel like my body is self sabotaging itself so like an autoimmune response i guess. My symptoms have been around for years that i keep having to hide as been ignored by others alot. Even health professionals at times find it difficult to believe someone of my age is so fatigued and have odd symptoms. Basically gets me more isolated and feeling misunderstood. Try to fit in but doing things like others do just worsens my symptoms and I further feel out of place as i have to withdraw from basically society in general to cope. Could all the stress and trauma and then illnesses like glandular fever i had be the cause then now body just self sabotaging itself as being healthy is not the usual way anymore? Like its some sort of new normal to feel this way? I want to get back to my body keeping up with my life goals again. To be able to socialise more, have more energy to do things that i am good at and make a difference in this world. I get very frustrated with myself looking around at what i can't do when I see so much needed to be done. Then again I also see that my illness is also a way for me to recover from bad lifestyle choices, things not suitable for me that i would of continued toxic relationships with all sorts of people in my life, working in various forms without much breaks trying to fit whatever i could in my life schedule instead of actually living life. I hope that i can learn my lessons, do better self care, and have a better balanced life that even when more well i can maintain. I guess the forced slow down due to cfs amd other issues is self sabotaging not only in a negative way but also a way to conserve my energy my life force can not be allowed to be wasted on toxic people, situations,lifestyle, environment. A wake up call i guess. That's my summary of my understanding of my experience with it.
 

iwillwin1day

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Me cfs is nothing but a weak immune system.
This is my understanding.
Every human being have with them 100 trillion viruses bacteria and fungi. The problem is not this microorganism. But the immune system. In healthy person immune is able to keep those nasty stuff in check. But in weak people Immune system struggle. Thus they get diseases. If your immune system is dead you will die on the spot...
 

sorin

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Me cfs is nothing but a weak immune system.
This is my understanding.
Every human being have with them 100 trillion viruses bacteria and fungi. The problem is not this microorganism. But the immune system. In healthy person immune is able to keep those nasty stuff in check. But in weak people Immune system struggle. Thus they get diseases. If your immune system is dead you will die on the spot...
Ok... And what makes suddenly the immune system to be weak? The immune system that used to be very good, becomes weak...
 

Wishful

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I'd say that my immune system is stronger than average. It might be malfunctioning in some way, but it certainly seems good at fighting infections. I haven't had a viral infection for several years.
 

HowToEscape?

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Me cfs is nothing but a weak immune system.
This is my understanding.
Every human being have with them 100 trillion viruses bacteria and fungi. The problem is not this microorganism. But the immune system. In healthy person immune is able to keep those nasty stuff in check. But in weak people Immune system struggle. Thus they get diseases. If your immune system is dead you will die on the spot...
Your immune system can kill you. Look up the Spanish flu epidemic.
 

iwillwin1day

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Ok... And what makes suddenly the immune system to be weak? The immune system that used to be very good, becomes weak...
There are more then hundred of possibility for your immune to became weak. And the common one I think is overworking of immune system. Also nutrients depletion may also be the cause. And we can't ignore gene also.
 

iwillwin1day

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I'd say that my immune system is stronger than average. It might be malfunctioning in some way, but it certainly seems good at fighting infections. I haven't had a viral infection for several years.
Yes. Actually immune system is of many kind. Some immune cells fight viruses and some bacteria. So u might have strong antiviral immune system but weak antibacterial immune system. Also same as you I also have very very powerful antiviral immune system. I don't have even get a flu in past 10 years!!!
 

Wishful

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The problem might not be our immune systems; it seems more likely to be an improper response to immune system activation. Our cells respond to immune system activation in various ways. One of those ways just seems to get stuck in an abnormal state.

My antibacterial immune system seems to be working adequately. I did get a minor skin fungal infection, but I'm not covered in mushrooms, so I guess my antifungal system is doing okay too. :)
 

JES

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Ok... And what makes suddenly the immune system to be weak? The immune system that used to be very good, becomes weak...
This is basically what happens in most chronic diseases. As you get past a certain age, even a healthy person has an increased risk of dying from catching something like the influenza virus. This is due to our immune system becoming weaker by age. It doesn't explain CFS, but CFS may well be an immune system that is both under- and overresponding to pathogens at the same time. I almost never catch a flu/cold myself, but it may be that my immune system is less equipped than it should against EBV due to genetics, so there might be several factors at play.
 
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I think ME is an autoimmune disease.

Metabolism and mitochondria feel damaged too from this autoimmune desease.

Since STAT-1 is said to be degraded in this illness, It is not caused by a persistant viral infection, though a virus might trigger it off in the same way that rheumatoid arthritis or other autoimmune diseases start after a viral trigger..
 
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My understanding of what M.E is.

Myalgic Encephalomyelitis is not merely a symptom, or a syndrome, but is instead a distinct disease. It has been recognised by the World Health Organisation (WHO) since 1969 as a distinct organic neurological disease with the code G93.3.

Myalgic Encephalomyelitis is a systemic acutely acquired illness initiated by a virus infection which is characterised by damage to the brain stem (a nerve centre through which many spinal nerve tracts connect with higher centres in the brain in order to control all vital bodily functions) which results in dysfunctions and damage to many of the body’s vital systems and a loss of normal internal homeostasis. Substantial evidence indicates that M.E. is caused by an enterovirus.

The onset of M.E. is always acute and M.E. can be diagnosed within just a few weeks. M.E. is an easily recognisable distinct organic neurological disease which can be verified by objective testing. If all tests are normal, then a diagnosis of M.E. cannot be correct.

M.E. is primarily neurological, but symptoms may also be manifested by cardiac, cardiovascular, immunological, endocrinological, respiratory, hormonal, gastrointestinal and musculo-skeletal dysfunctions and damage. More than 64 distinct symptoms have been authentically documented in M.E., several of which are unique to the disease. Fatigue is not a defining nor even essential symptom of M.E. People with M.E. would give anything to be only severely ‘fatigued’ instead of having M.E.

M.E. can occur in both epidemic and sporadic forms and over 60 outbreaks of the illness have been recorded worldwide since 1934. M.E. can be extremely disabling and in some cases the illness is fatal. M.E. is a chronic/lifelong disease that has existed for centuries. It shares similarities with MS, Lupus and Polio. Far fewer than 0.5% of the population has the distinct neurological disease known since 1956 as Myalgic Encephalomyelitis.
 
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My understanding of the FAKE label C.F.S.

For whose benefit was ‘Chronic Fatigue Syndrome’ created, and for whose benefit is it so heavily promoted despite its utter lack of scientific credibility? Who benefits from the artificial ‘CFS’ construct? Who benefits from Myalgic Encephalomyelitis and ‘CFS’ being mixed together through unscientific concepts such as ‘CFS/ME’ and ‘ME/CFS’ and Myalgic ‘Encephalopathy’? Who benefits from the facts of M.E. remaining ignored, obscured and hidden in plain sight?

The short and simple answer to this question is: medical insurance companies.

Medical insurance companies were heavily involved in the creation of ‘CFS’ and they remain heavily involved in the promotion and dominance of the ‘CFS’ concept today. M.E. is a widespread problem, potentially exposing medical insurance companies to the financial risk of huge numbers of long-term disability claims. Through the creation of the bogus disease category of ‘CFS’ these companies have saved themselves many millions of dollars. They have been able to deny many thousands of legitimate claims.

The ‘CFS’ concept has saved an incredible amount of money for these companies. This is why ‘CFS’ is proving so resistant to scientific reality, despite pressure from patient groups who are trying to stop the horrific abuse and needless deaths caused by the ‘CFS’ scam: because such enormous amounts of money are at stake these medical insurance companies will stop at nothing to protect their enormous financial gains.

The problem is not a lack of scientific evidence supporting M.E., but that the mountain of evidence which exists is continually ignored by those in positions of power who are abusing that power to further their own vested interests, helped immeasurably by the creation of 'CFS.' For 20 years this massive scientific fraud has continued almost unchallenged by the world’s media, human rights groups and governments. It is a worldwide disgrace. The bogus and financially motivated disease category of ‘CFS’ must be abandoned.

1. Where did the artificial ‘CFS’ construct come from?

2. Who benefits from the artificial ‘CFS’ construct?

  1. Medical insurance companies
  2. Governments
  3. The vaccine industry
  4. The chemical industry
  5. Psychiatrists
  6. ‘CFS’ doctors
  7. Medical doctors
  8. The media (including medical journals)
  9. CFS’ or ‘ME/CFS’ (and other) groups that sell vitamins and other supplements to ‘CFS’ patients
  10. CFS’ or ‘ME/CFS’ (etc.) so-called patient support and advocacy groups.