Was there a gap between trigger and onset of your ME/CFS?

Was there a gap?

  • Yes:Less than a week

    Votes: 0 0.0%

  • Yes: 7-14 days

    Votes: 1 1.4%

  • Yes:More than two weeks

    Votes: 11 15.3%

  • No

    Votes: 47 65.3%

  • Yes: more than 2 months

    Votes: 13 18.1%
  • Total voters
    72
This is a fascinating question! Beginning 7/26/90 I had a vicious GI bug that landed me in the hospital for a week. Intense diarrhea for 8 days straight. When that ended, I was really wiped out, as expected, but each day I felt a little stronger. Then I woke up on 8/9/90 feeling like I'd been hit by a truck, and that intense, weighed down, unrelenting exhaustion never went away. I've always wondered why I had the little gap of recovering health, and what trigger shut it down so rapidly and completely.

Edited to add that I was completely well before I got the GI bug, but I had had a terrible flu about 8 months earlier.
 
@Jonathan Edwards - this is from another thread:

Dakota15 said:
11/10/23, Health Chatter: Long Covid with Kate Murray & Jay Desai, Long COVID Program Minnesota Dept. of Health

[...] “There is a subset of folks who are being disabled by these infections and their symptoms, they may even seem like the acute infection resolves and they start having these new symptoms several weeks or even a few months later. And that's kind of this, it used to be called chronic fatigue syndrome.
Click to expand...
This reminds me that before vaccines were available for Covid, there were a lot of reports that people would get an acute Covid infection and then about five or six weeks later would get hit really hard by it, even if it had seemed to have improved in the meantime, and that it would be worse than the original infection.

I had exactly this pattern at the time with what appeared to be a virus, though I wasn't able to get a Covid test. But the experience - the big gap, and then getting whacked harder than when the infection first happened - was quite unlike all my other ME experiences with viruses.

Do you have any thoughts about why this pattern was seen with Covid and not so much with other viruses? I don't know whether this aspect of Covid was ever thought much about. I haven't heard people really talk about this pattern much since the vaccines came out.
 
Sasha said:
Do you have any thoughts about why this pattern was seen with Covid and not so much with other viruses?
Click to expand...

I think there is a problem with physicians who have an interest in this sort of thing in that what they see in clinics may be very skewed by referral patterns. There is also the problem with Covid that since almost everyone has had it, it is hard to know whether or not it has anything to do with why they are ill, especially if it is a few months later.
 
I had a cold that wouldn't go away and lasted for six months, however, I attribute my ME/CFS to the antibiotics that I was put on. Three days after starting on the antibiotics I woke up that morning feeling the best I had in almost a year, and then that evening I was hit with the worst exhaustion I have ever experienced and still have it almost 34 years later. The exhaustion didn't start gradually - I went from feeling great one second and the next second it was like someone had flipped a switch. So for the poll I answered "less than a week".
 
For a while I’ve been wondering about running a different poll, but I’m not sure how to word it. Because I could accept any of these explanations

- there was a clear triggering event which started it all with no gap
- there was clear triggering event but a gap before I got full ME/CFS
- there was a triggering event I wasn’t aware of that didn’t make me clearly symptomatic but I subsequently developed ME/CFS by other events
- there was a long development or progression unrelated to any specific event but I got worse following a subsequent event or events
- there was a trigger that made me ill but only mildly then later events made me moderate then severe

I guess I’m just quite uncertain about it all and could retrofit various explanations
 
Really hard to tell for me. And even it’s murky what exactly my trigger was. Here’s a long winded example (my case) of why pinpointing a single trigger is very hard.

My whole life I’ve had weird stomach issues that seemed to flare a little bit more when I was really pushing myself, ie. skiing, long distance running, lack of sleep, or very stressful times.

In 2021, I got a flu (or COVID) and my stomach issues have been ever slightly worse since then, and I remember feeling a little off, though I thought it was due to my changed diet.

In 2022, I got infected by COVID (confirmed), and was somewhat sick, mostly stomach symptoms, my stomach symptoms and quick fatiguability lingered for weeks and were still ongoing when I had a really big knee surgery (a couple weeks post-COVID onset).

That knee surgery thrashed me, I mean I was stuck in bed for a month. (I also couldn’t walk so it kind of made sense I was stuck in bed). But my stomach symptoms flared worse than ever before. Over time I improved, I was doing like 10 hours of physio per week and had gotten better.

So for the next year and a bit, I led a relatively normal life, though with many annoying symptoms, and the feeling my health was declining after every physio appointment (which I blamed myself being “deconditioned” for). I did not meet ME criteria during this time as I was going on runs and cross country skiing.

Eventually all the doctors I’d been badgering sent me to a therapist. Me and the therapist seemed to think I should focus on my symptoms less. So I did. And I had an amazing 2-3 months. Where I pushed myself, felt healthier, and ignored warning signs.

Until one day I collapsed in bed and became very severe. I have not improved since. It was only then I started fitting the ME criteria.

But when did my illness start? What was the trigger? That’s a question without a grand answer I think. “It depends”. I usually say COVID, because that was the difference between when I generally felt okay and generally felt ill.
 
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