What proportion of people with ME/CFS who become severe or very severe do so within the first three months? Did you?

-Sudden viral vestibular onset 1991. Was still able to attend school and exercise. Had mild sore throat and ear. Didn't have PEM or delayed PEM.

-Six months later- 'extremely elevated anti-thyroid antibodies".

-Felt almost recovered 9 months later from PVFS, but relapsed badly after returning to work 4 weeks later.

-Did aggressive rest therapy for 5.5 years and felt almost recovered again. but started exercising and experiencing PEM and delayed PEM for the first time.

-Took immune modulators in 2001 and had major relapse that reactivated EBV and HHV6. Recovered after 2.5 months and started running again.

-all that changed my baseline and I developed OI.
 
After a very long prodrome/period of being "very mild," I declined over a few weeks to moderate, where I stayed for a year or so. About two months after diagnosis, in the midst of that decline to moderate, I had a crash that left me severe for about two weeks - this was actually the first time I had PEM significant enough that it forced me to confront that the diagnosis was real - but then I returned quite quickly to my sloping "baseline." There were a few more crashes knocking me into severe for a short spell over the next year, then slow improvement to somewhere fluctuating between mild and moderate most of the time, more or less up to the present day.
 
Mild/moderate for 11 years. I could work part time, cook, go shopping etc. I lived in constant PEM - exhausted, poisoned and fluey - but I didn’t understand I had ME/CFS and that it was dangerous to have PEM. I thought pushing myself would cure me.

One final crash caused me to become bedbound and severe overnight. I felt physically that something ”broke” in my body during that crash. Never recovered since.
 
RainbowCloud said:
Virtually everyone has gotten progressively worse, which is heartbreaking but also interesting because I don’t feel that’s what’s reflected in most literature about ME.
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Yes; I try to keep in mind that there's obvious selection-bias at work here, but it is difficult not to get the sense that deterioration is inevitable, particularly if one doesn't proactively confine oneself to bed and live as though severe no matter what the current symptom load. And you're right, very little if any of the literature gives the impression that this is the case.
 
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Initially ill with glandular fever in 1986, with PVFS being diagnosed once symptoms were a bit less severe. Could do college work on alternate days, but could only complete an extended piece of work by going home to bed in my 30s to work and my mother looking after me.
Eventually became mild and resumed work very part time building up to 4 days a week. Considered myself recovered but low in stamina. Now I think this was mild ME which progressed to moderate, fluctuating over the years.I was diagnosed with ME in 2008.
For about the last 6-8 years, I have been severe, bed or recliner bound using wheelchair and being accompanied when leaving home. Need a stair lift and bath aids. I attend medical appointments with Mr B's help. The severity continues to worsen.
Conversation with family is becoming more difficult and episodes of pem begin after less activity and last longer. I am having to write to tell friends that I cannot exchange news on the phone. It's frightening and writing this has troubled me.
 
sudden onset to mild

near complete remission

sudden relapse to mild/mod

fairly good remission

sudden relapse to moderate

stepwise decline to mod/severe (stepwise = incomplete return to pre-PEM state after severe PEM episodes; fortunately ‘normal’ PEM doesn’t seem to have this effect)

gradual, slow decline to severe, appears to be ongoing (please someone make it stop before I hit very severe)
 
Post-viral fatigue became mild ME in 1980 a few months before starting primary school.

Diagnosed 1988 when mild/moderate after deteriorating on starting secondary school.

Deteriorated to moderate/severe 2006 needing a wheelchair after starting work for the first time.

Largely housebound since 2010.

Mostly bedbound since 2019.

Each deterioration has been linked to an ongoing increase in demands on me linked to life stage, and was usually triggered by an everyday infection which took months to resolve. At each stage I have stabilised with rest, only to deteriorate again once that support was withdrawn and external demands resumed.

If I had benefitted from suitable social support and good medical care, I think I would still be mild - or even could have recovered as a child, as many do. My ME history shows what happens when that support is largely absent, and when huge social, economic and family pressure is applied to continue banging your head against a brick wall.

As my father told me last month, “You’ll regret it if you don’t try.” Um…

I regret taking up some amazing opportunities the way crash victims regret a helmet-less motorcycle ride. If I could give my four-year-old self a piece of advice it would be, “Please stop trying so hard.”
 
Very severe within first 3 months (post-Chickenpox aged 9), hospitalised for several months. Recovered to mild/moderate and returned to school until age 15, when I became very severe, hospitalised again. Near complete remission in early-20s, able to attend college and work full-time. Back to mild by mid-20s, moderate by 30s, severe by 40s, very severe by 50s.
 
Mild for the first 10 years or so. Near-remission in early 20s able to attend college and then graduate school and full-time work. Severe from mid-20s onwards, probably thanks to introducing exercise after GP urged me to. Severe for several years, then slow improvement to moderate.
 
Sasha said:
Once you've got the information you need, I'd be curious about what is significant about three months!
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Arbitrary, but intended to indicate that more than one event is involved. The initial period around a trigger needs to be over. Immune responses are about the slowest events we know of - evolving over as much as a month, but not much more than that.

The idea is to consider what proportion of people are sever or very severe apparently because of some second event on top of whatever establishes an ill state in the first place.
 
Jonathan Edwards said:
Arbitrary, but intended to indicate that more than one event is involved. The initial period around a trigger needs to be over. Immune responses are about the slowest events we know of - evolving over as much as a month, but not much more than that.

The idea is to consider what proportion of people are sever or very severe apparently because of some second event on top of whatever establishes an ill state in the first place.
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I'm sure you are aware of this, but there's quite a lot of annecdote about patients having the initial trigger/infection, seemingly then on the mend for a week or two, and then crashing bad, and subsequently developing ME/CFS.
 
Jonathan Edwards said:
Arbitrary, but intended to indicate that more than one event is involved. The initial period around a trigger needs to be over. Immune responses are about the slowest events we know of - evolving over as much as a month, but not much more than that.

The idea is to consider what proportion of people are sever or very severe apparently because of some second event on top of whatever establishes an ill state in the first place.
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Is the accumulation of long-term efforts considered a second event, or are you referring to a new infection, a new major shock, or a significant, more sustained effort?
 
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