Does the type of triggering insult affect symptom type, severity, and prognosis?

[Jesse2233]

This is a question without a good answer. The obvious response is that more research is needed. That said, I'm curious as to what people's opinions are based on their own experience and their understanding of the research.

Some things to consider:

• Whether the triggering insult remains as an ongoing factor or if leaves a common dysfunctional aftermath
  
  
• If an initial infection or trauma causes lasting damage in its acute stage (e.g. encephalopathy, myocarditis)
  
  
• A given pathogen's tropism for a type of tissue or organ system (e.g. enterovirus vs herpes family)
  
  
• Treatability of a given infection with drugs (e.g. antibiotics vs antivirals)
  
  
• Ability of a pathogen or triggering insult to cause autoimmunity / immune dysfunction (through either molecular mimicry e.g. a pathogen is misidentified as a host protein, or chronic immune evasion / activation)
  
  
• Ability of a pathogen to evade the immune system (e.g. by forming intracellular non-cytolytic infections, hiding in biofilms or "immortal" tissues, using cytokines like IL-10 to evade detection)
  
  
• If symptom / severity / duration variability can be explained by other factors such as host constitution / genetics, chance, sex, age, and/or ethnicity.

 

[Butydoc]

This is a question without a good answer. The obvious response is that more research is needed. That said, I'm curious as to what people's opinions are based on their own experience and their understanding of the research.

Some things to consider:

• Whether the triggering insult remains as an ongoing factor or if leaves a common dysfunctional aftermath
  
  
• If an initial infection or trauma causes lasting damage in its acute stage (e.g. encephalopathy, myocarditis)
  
  
• A given pathogen's tropism for a type of tissue or organ system (e.g. enterovirus vs herpes family)
  
  
• Treatability of a given infection with drugs (e.g. antibiotics vs antivirals)
  
  
• Ability of a pathogen or triggering insult to cause autoimmunity / immune dysfunction (through either molecular mimicry e.g. a pathogen is misidentified as a host protein, or chronic immune evasion / activation)
  
  
• Ability of a pathogen to evade the immune system (e.g. by forming intracellular non-cytolytic infections, hiding in biofilms or "immortal" tissues, using cytokines like IL-10 to evade detection)
  
  
• If symptom / severity / duration variability can be explained by other factors such as host constitution / genetics, chance, sex, age, and/or ethnicity.

I tend to believe that there are many triggers that end up in a final common pathway we call ME/CFS. I have a very strong family history over three generations which each affected member having a different trigger. Two out of 5 members had a viral trigger, one from emotional stress, one from pregnancy and one form excessive exercise. I developed the disease at age 51, my mother probably at age 60, my brother at 21 and my two children in their early 30s. Hard for me to believe the disease is from a continued microbial insult. I suspect in my family, there must be an abnormal gene or gene product that leads to this common pathway from a variety of insult.

 

[pattismith]

I tend to believe that there are many triggers that end up in a final common pathway we call ME/CFS. I have a very strong family history over three generations which each affected member having a different trigger. Two out of 5 members had a viral trigger, one from emotional stress, one from pregnancy and one form excessive exercise. I developed the disease at age 51, my mother probably at age 60, my brother at 21 and my two children in their early 30s. Hard for me to believe the disease is from a continued microbial insult. I suspect in my family, there must be an abnormal gene or gene product that leads to this common pathway from a variety of insult.

You must have some susceptibility gene for it, I do think the same for my family.

My grand mother was ill as a young adult, like me, and my mother was ill later at 50.

Did you check your nuclear genes for mitochondrial electron transport chain?

 

[pibee]

I just got impression, might be completely wrong, that rapid onset, usually viral (?) is the most severe form ? !
Also, seems like young men are more often severe with rapid onset.
But there should be some data on this.

 

[justy]

I have a very strong family history over three generations

Im sorry to hear this. I also have a strong family history. My birth mother has (milder) M.E as does a maternal cousin, then there is me and my daughter, who does not have a diagnosis also has been ill with a similar illness which is now in sort of remission. As i didnt grow up with my birth mother or cousin it must be genetic as opposed to environmental.

I was interested to see the ages of onset in your family are quite old. Ive not seen many people getting M.E in their 50s or 60s. Have you thought much about this angle?

For my family i am sure we have EDS, but cant get proper dx currently.

I just got impression, might be completely wrong, that rapid onset, usually viral (?) is the most severe form

My onset was gradual initially, and i was severely affected, then moderately, then very mildly then in remission. Now, i have been moderately, then severely affected for the past 9 years after a viral infection caught 9 years ago.I cant speak for the very severe, but i have it in its severe form and did have both a gradual and viral onset, if that makes any sense.

 

[pattismith]

Im sorry to hear this. I also have a strong family history. My birth mother has (milder) M.E as does a maternal cousin, then there is me and my daughter, who does not have a diagnosis also has been ill with a similar illness which is now in sort of remission. As i didnt grow up with my birth mother or cousin it must be genetic as opposed to environmental.

I was interested to see the ages of onset in your family are quite old. Ive not seen many people getting M.E in their 50s or 60s. Have you thought much about this angle?

For my family i am sure we have EDS, but cant get proper dx currently.

Did the mitochondrial disorders were ruled out in your family justy? My onset was early and gradual too ...

 

[justy]

Did the mitochondrial disorders were ruled out in your family justy? My onset was early and gradual too ...

No, they have not been ruled out as the NHS wont even consider testing me. i wouldnt know how to go about doing this privately in the UK.

 

[ljimbo423]

I got a viral infection at age 18 and became unable to work from CFS. Cleaned up my diet, stopped drinking, and started taking some supps.

After a year or two I was able to go back to work full time. Slowly, over the next 8-10 years, my CFS returned and I became unable to work again. I am also the only person in my family, immediate or extended, to have CFS.

I still think the core issue is the microbiome. Why researchers can't find this I don't really understand. Also, why it's so hard to treat I don't understand either.

Having read many people's experiences with treating SIBO and dysbiosis. It's not unusual for it to take 2-3 years or longer, in otherwise healthy people. There are 2 blogs I have read recently of women in there 20's.

They both did everything right, low carb diet, anti-biotic herbs, probiotics, etc. It still took them 2-3 years to heal their GI tract AND they didn't have CFS!

I don't believe I can get well without healing my gut but It's a long haul! I've made really good progress in the last 7 months and continue to but it's slow going.

Jim

 

[Butydoc]

Im sorry to hear this. I also have a strong family history. My birth mother has (milder) M.E as does a maternal cousin, then there is me and my daughter, who does not have a diagnosis also has been ill with a similar illness which is now in sort of remission. As i didnt grow up with my birth mother or cousin it must be genetic as opposed to environmental.

I was interested to see the ages of onset in your family are quite old. Ive not seen many people getting M.E in their 50s or 60s. Have you thought much about this angle?

For my family i am sure we have EDS, but cant get proper dx currently.



My onset was gradual initially, and i was severely affected, then moderately, then very mildly then in remission. Now, i have been moderately, then severely affected for the past 9 years after a viral infection caught 9 years ago.I cant speak for the very severe, but i have it in its severe form and did have both a gradual and viral onset, if that makes any sense.

I developed the disease at 51, my mother at 60, my brother at 21, my daughter at 33, and my son eat 32. My youngest daughter who is 25 is showing soft signs of the disease. I doubt age plays a role.

 

[pattismith]

No, they have not been ruled out as the NHS wont even consider testing me. i wouldnt know how to go about doing this privately in the UK.

if you have your 23andme datas, maybe it's worth a check of your mitoDNA with the ENLIS software?

 

[Hip]

I developed the disease at 51, my mother at 60, my brother at 21, my daughter at 33, and my son eat 32. My youngest daughter who is 25 is showing soft signs of the disease.

That's a lot of ME/CFS in one family. Apart from a genetic connection, I wonder if there might also be a common pathogen behind all that illness? The late Dr John Richardson was particularly interested in enterovirus-associated diseases, especially ME/CFS, and as a family doctor would keenly observe how once an enterovirus had infected one family member, before long other members would also become infected, and manifest enterovirus-associated diseases.

See the chapter "Familial Consequences of Viral Illness" from his book Enteroviral and Toxin Mediated Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Other Organ Pathologies.