The two age peaks in onset of ME/CFS

[Amw66]

I have heard they can go into remissions to be worst after giving birth. Do not remember a percentage or how often.

Yes, a friend' s sister was much improved during pregnancy and worse afterward. Immune system switch may make sense and would seem to be worth studying.

It would be interesting to see metabolomics and immune expression before during and after pregnancy ...

 

[Seven]

It would be interesting to see metabolomics and immune expression before during and after pregnancy ...

And maybe a study on people like me that gets remission on colds and viruses. Before, during, after and see what changes.

 

[BruceInOz]

I found the graphs that showed people had been steadily/dramatically increasing the number of GP consultations, tests, prescriptions and referrals in the up to 10 years prior to a diagnosis also very interesting in this context.

Couldn't this simply reflect the long time taken to get a diagnosis, especially in gradual onset cases? I suspect that, if sudden and gradual onset were separated, the marked increase in consultations in years preceding diagnosis would be much reduced or nonexistent in the sudden onset group.

 

[Barry]

This could be something where the big-data research approach might turn up a correlation or two to investigate further, maybe identifying some unexpected possibilities.

 

[AliceLily]

In regards to GP visits leading up to diagnosis of ME for gradual ME patients I wonder how many patients had severe cognitive symptoms as the most obvious symptom in the early mild years.

I had significant change cognitively at my mild onset and in the background I was noticing something wrong physically PEM wise but not understanding the PEM. My doctor visits were about the cognitive side not the physical side because I was still trying to understand what was happening totally. So in this circumstance early ME can look like stress/mental problems to GP? So it wasn't until severe that I finally got a diagnosis of ME.

 

[Mithriel]

There was a paper published about GP usage in the year before diagnosis. They found that there were more visits and concluded that this showed we were hypochondriacs (though they put it differently!) An equally valid conclusion would have been that more infections challenged the immune system.

As is typical with BPS research the methodology was dreadful and uninterpretable. It turns out the commonest reason for seeing a GP was "illegible"

 

[WillowJ]

Regarding apparent lower incidence during 20's:

I was sick at that time, and no doctor wanted to believe I was ill. It was too early for diseases like Lupus and MS, and too late for child onset diseases. Some of them didn't even write symptom notes in my charts, so it would have been difficult for a chart review to pick up that I was actually ill. Certainly the first couple of doctors didn't refer me anywhere.

It seems possible to me that anyone getting ME over 65 will simply quietly retire from work and put it down to age and adjust their lifestyle to cope with it, rather than seeking specialist referral.

Or it's another age bias from the doctors.

You can be ill only at certain ages. Otherwise it's being a silly young thing, or aging. Or whatever excuse the doctor can think of, if they can't figure it out in 7 minutes.