Are Infections Just a Trigger of ME/CFS, or an Ongoing Cause of ME/CFS?

[Jonathan Edwards]

I've just been watching Dr Bell's presentation:

and at around 41:50 he talks about kids who got sick, whom he followed up at intervals over the years. He says that they get better at first but at about 35 years of age, they go sharply downhill.

I'm wondering how this relates to the two-peak age distribution (among other things).

A very interesting question. It would be worth studying systematically.

 

[Snow Leopard]

I've just been watching Dr Bell's presentation:

and at around 41:50 he talks about kids who got sick, whom he followed up at intervals over the years. He says that they get better at first but at about 35 years of age, they go sharply downhill.

I'm wondering how this relates to the two-peak age distribution (among other things).

Interesting indeed!

I think there has been so little epidemiological research that perhaps details like this have been overlooked.

 

[Sasha]

A very interesting question. It would be worth studying systematically.

Interesting indeed!

I think there has been so little epidemiological research that perhaps details like this have been overlooked.

I can't remember at what ages the bimodal distribution of disease onset peaked. Was one of the peaks around age 35? I seem to remember it was some age that didn't seem to make a lot of biological sense because it wasn't an age at which changes occurred (so not around puberty or menopause, for example).

Interesting that there's an age peak for onset and (possibly) a peak for decline, at least in people who had childhood onset. I wonder if there's a similar peak for decline in people with adult onset. I don't fit that pattern and I'm sure a lot of us won't, but we need proper studies to get a big picture.

@Jonathan Edwards - do you have an oar in the Grand Challenge? Is this the sort of question - age of disease onset, age of remission onset, age of relapse onset - that could be included?

What do you think, @Simon?

 

[BurnA]

Interesting that there's an age peak for onset and (possibly) a peak for decline, at least in people who had childhood onset. I wonder if there's a similar peak for decline in people with adult onset. I don't fit that pattern and I'm sure a lot of us won't, but we need proper studies to get a big picture.

This is what i was wondering. Would there be a similar rate of decline in 60-70 year olds who had adult onset ?
If so perhaps its just the impact this disease has on the body that after 20-30 years it gives up the fight.

 

[MeSci]

This is what i was wondering. Would there be a similar rate of decline in 60-70 year olds who had adult onset ?
If so perhaps its just the impact this disease has on the body that after 20-30 years it gives up the fight.

I don't know if this makes any sense, but I am experiencing an apparent decline right now, about 21 years after the apparent start, although there were suggestions earlier. My commencement was at age 42.

There are, however, other things happening that doctors are ignoring: for example hair loss (for years, but now on the head as well as the body) which has been going on since last year.

My body is behaving terrifyingly...I have just spent 6 days in hospital, only to be sent home again, with my health needs ignored, and have to wait another 4 days to see my (less-favoured) doctor. I can't even remember most of my banking details.

 

[Jonathan Edwards]

I can't remember at what ages the bimodal distribution of disease onset peaked. Was one of the peaks around age 35? I seem to remember it was some age that didn't seem to make a lot of biological sense because it wasn't an age at which changes occurred (so not around puberty or menopause, for example).

Interesting that there's an age peak for onset and (possibly) a peak for decline, at least in people who had childhood onset. I wonder if there's a similar peak for decline in people with adult onset. I don't fit that pattern and I'm sure a lot of us won't, but we need proper studies to get a big picture.

@Jonathan Edwards - do you have an oar in the Grand Challenge? Is this the sort of question - age of disease onset, age of remission onset, age of relapse onset - that could be included?

What do you think, @Simon?

I think the second incidence peak was around 35 in the Norwegian study. So maybe there is some brain susceptibility at these two ages. It does not seem very like an immune pattern, although anything is possible.

 

[Scarecrow]

I can't remember at what ages the bimodal distribution of disease onset peaked. Was one of the peaks around age 35? I seem to remember it was some age that didn't seem to make a lot of biological sense because it wasn't an age at which changes occurred (so not around puberty or menopause, for example).

The graph is in Simon's post here:
http://forums.phoenixrising.me/inde...onucleosis-glandular-fever.35059/#post-548361

 

[Sasha]

The graph is in Simon's post here:
http://forums.phoenixrising.me/inde...onucleosis-glandular-fever.35059/#post-548361

Wow - that's pretty much smack on 35.

 

[me/cfs 27931]

Anecdotal, but I had ME/CFS onset following a viral infection at age 15 (not mono). Went into serious decline at age 38. No significant remission since then. I'm now 53 years old.

Sometimes you feel like a number.

 

[BurnA]

Anecdotal, but I had ME/CFS onset following a viral infection at age 15 (not mono). Went into serious decline at age 38. No significant remission since then. I'm now 53 years old.

Sometimes you feel like a number.

Sorry to hear that @Webdog
How were you before your decline at 38?

 

[Hip]

I can't remember at what ages the bimodal distribution of disease onset peaked.

Two age peaks in the incidence of chronic fatigue syndrome/myalgic encephalomyelitis: a population-based registry study from Norway 2008–2012

For ME/CFS onset, the study found there were two peaks in the figures: a first peak in the age group 10 to 19 years, and a second peak in the age group 30 to 39 years.

 

[BurnA]

I think the second incidence peak was around 35 in the Norwegian study. So maybe there is some brain susceptibility at these two ages. It does not seem very like an immune pattern, although anything is possible.

Do immune diseases typically have a pattern ?

 

[Jonathan Edwards]

Do immune diseases typically have a pattern ?

Yes, most autoimmune conditions are more common in females and get commoner with age. Lupus has a peak in childbearing years maybe related to oestrogens. There are also specifically childhood immune disturbances - maybe due to errors in early development or genes. Multiple sclerosis is unusual in having a peak at 35. What seems hard to fit with an immune process is an onset in adolescence with improvement and then worsening at 35. I don't really buy this idea of immune exhaustion. I am not sure what it could mean.

 

[voner]

Yes, most autoimmune conditions are more common in females and get commoner with age. Lupus has a peak in childbearing years maybe related to oestrogens. There are also specifically childhood immune disturbances - maybe due to errors in early development or genes. Multiple sclerosis is unusual in having a peak at 35. What seems hard to fit with an immune process is an onset in adolescence with improvement and then worsening at 35. I don't really buy this idea of immune exhaustion. I am not sure what it could mean.

@Jonathan Edwards,

If not immune exhaustion, can you speculate about what other processes might cause this "two peak" type of profile?

 

[Chrisb]

Would post-polio syndrome fit into this sort of idea, or is that thought to be something different?

 

[Jonathan Edwards]

@Jonathan Edwards,

If not immune exhaustion, can you speculate about what other processes might cause this "two peak" type of profile?

I have no very clear suggestions I am afraid. I think we ought to see if this anecdotal account bears up on an epidemiological scale.

 

[paul80]

I got glandular fever(mono) at 15, never recovered fully but got slightly better in my 20's. The last couple of years i got much worse. I'm 35.

I thought(hoped) it's my adrenals that are causing me to deteriorate cause my sleep has been really messed up. Should get my results for that back this week.

 

[halcyon]

Would post-polio syndrome fit into this sort of idea, or is that thought to be something different?

There are some interesting analogs between ME and PPS. I believe the onset of PPS is normally thought to be x number of years following the infection, not necessarily at a certain age. There could be an age factor too though, I don't know a lot about it.

 

[halcyon]

I don't really buy this idea of immune exhaustion.

I'd be curious to hear your thoughts on why, as I agree exhaustion seems like a misnomer. It seems like dysregulation would be a more accurate term.

 

[me/cfs 27931]

Sorry to hear that @Webdog
How were you before your decline at 38?

My disease since age 15 has been relapsing/remitting. Typically I would get very sick for 1-4 years before a partial remission of similar duration. During remission I could generally go back to work full time or school.

Since age 38, remissions have been significantly less. Once mostly episodic neurological symptoms are now chronic. Particularly cognitive function, eye movement, gait problems and breathing problems. Age 38 definitively marked the end of my ability to work full time.

Currently, I'm more than 2 years into a relapse and mostly housebound.