Patient perceptions of infectious illnesses preceding Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

nerd

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Authors: Leonard A Jason, Samuel Yoo, Shaun Bhatia
Published: 2021 Sep 20
PMID: 34541918
doi: 10.1177/17423953211043106

Abstract
Objectives: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is often reported to be caused by an infectious agent. However, it is unclear whether one infectious agent might be the cause or whether there might be many different infectious agents. The objective of this study was to identify self-reported infectious illnesses associated with the onset of ME/CFS.

Methods: The present study involved data from multiple sites in several countries. 1773 individuals diagnosed with either ME, CFS or ME/CFS provided qualitative data concerning infectious triggers which were coded and classified for analysis.

Results: 60.3% of patients report a variety of infectious illnesses some time before onset of ME/CFS. The most frequently reported infectious illness was Mononucleosis, which occurred in 30% of infections. However, over 100 other infectious illnesses were mentioned.

Discussion: The findings suggest that many infectious agents might be associated with the onset of ME/CFS.
 

Wishful

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If many people can identify an infectious trigger, I think it makes the case for infection stronger.
It depends on how the questioning was done. I expect that if you posed the right questions, you'd get 60% or whatever of the respondents to agree that their ME was preceded by eating a banana or seeing an ugly person or whatever factor people commonly encounter with no effects. What percentage of people, with or without ME, remember having an infection in the last x months? If the people are primed to believe that an infection was the cause, some percentage will create false memories to justify their belief.

My ME seemed to start with a type IV food sensitivity (t-cell reaction). It initially felt exactly like a flu coming on, but the symptoms changed a bit, and when I stopped the type IV sensitivity 2.5 years later, the same symptoms remained, but triggered by non-t-cell reactions. My hypothesis is that t-cell activation triggers ME, regardless of what triggers the t-cell response. I don't know whether activation of other immune systems (IgE, IgA, glial) can also trigger ME. It's up to immunology experts to figure out what about t-cell activation might be triggering ME.

I do wonder why I would suddenly develop type IV sensitivity at age 39, but I didn't have any other symptoms or responses related to ME before that, so I don't think ME came first and caused the type IV sensitivity. Maybe there's a shared t-cell abnormality.
 
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60.3% of patients report a variety of infectious illnesses some time before onset of ME/CFS.
I have to agree with Wishful on this. I'm surprised that 40% of their patient group reported no infectious illness before onset. When my daughter was diagnosed, we spent a lot of time racking our brains for anything she had had that could have been a virus.

I can't cite anything off the top of my head, but my general impression is that the research is pointing to ME/CFS being a state that someone finds themselves in, and there are many ways to get into that state. In my daughter's case, she was an elite athlete, which seems to be one of the "risk factors" for developing ME/CFS.
 

ljimbo423

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I can't cite anything off the top of my head, but my general impression is that the research is pointing to ME/CFS being a state that someone finds themselves in, and there are many ways to get into that state.
I agree. I think all these different "triggers" cause "primed" microglia in the brain, and the low grade neuroinflammation that ME/CFS researcher Jarrod Younger and others have found.

Jarred thinks these primed microglia and the neuroinflammation they cause when activated, activate the sickness response in the brain, causing fatigue, malaise, pain, etc.

I think for most of us it's immune system activation from a leaky gut, and stress, activating these sensitized micoglia. This keeps the microglia activated to some degree, maintaining symptoms. And causing a greater degree of microglial activation and worsening of symptoms when stress is elevated or by physical activity.

In my daughter's case, she was an elite athlete, which seems to be one of the "risk factors" for developing ME/CFS.
Sorry that your daughter has developed ME/CFS. There is research that shows an increase in gut dysbiosis and leaky gut from intense, prolonged exercise.

I did a quick search and found this abstract-

Intensive, prolonged exercise seemingly causes gut dysbiosis in female endurance runners

Abstract
Intensive, prolonged exercise is known to induce gastrointestinal disorders such as diarrhea, with gut dysbiosis suggested as being one of the causatives. In the present study, we wanted to investigate the relationship between intensive exercise and the gut microbiota status.

To that end, the microbiota, the moisture content and the bacterial metabolites (e.g., organic acids) of female endurance runners (n = 15) and those of non-athletic but healthy, age-matching female controls (n = 14) were compared.

The analysis of the gut microbiota analysis showed that, unlike control subjects, female endurance runners had distinct microbiotas, with some bacteria found in higher abundances likely being involved in gut inflammation.

The concentration of succinate, a gut bacterial metabolite regarded as undesirable when accumulated in the lumen, was significantly (p<0.05) higher in the female endurance runners. Faecalibacterium, that was significantly (p<0.05) abundant in female endurance runners, can produce succinate in certain environments and hence may contribute to succinate accumulation, at least partly.

The present work suggested that the gut microbiotas of female endurance runners are seemingly dysbiotic when compared with those of control subjects. Further investigation of the mechanism by which intensive, prolonged exercise affects the gut microbiota is recommended.
https://www.ncbi.nlm.nih.gov/labs/pmc/articles/PMC8129978/

This is a link to a google search with more studies showing dysbiosis and leaky gut caused by intense exercise.

I hope this helps!
 
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