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

[Jonathan Edwards]

We may have done this before but if so I forgot. The question is, if you attribute your ME/CFS onset to a trigger such as an infection or a vaccination, was there a gap when you seemed OK in between?

What I am interested in is slightly complicated because it is the time delay between onset of the trigger and onset of ME/CFS. If the trigger infection lasted three weeks and you had a gap and then had ME/CFS symptoms at three and a half weeks then the answer is 'more than two weeks' even though the well gap was half a week.

If there was no well gap at all then the answer is no even though the ME/CFS may have come on weeks after the trigger started.

Sorry to be so obscure but I think this best reflects what I am trying to get at.

 

[Braganca]

2 bad infections, first was influenza for first time, 3 month gap, second respiratory infection, then four month gap before ME onset.

 

[Jonathan Edwards]

@Braganca
That sounds more than... I have added a more than 2 months which seems to fit either way.

Oops I see you voted. Doesn't matter.

 

[SNT Gatchaman]

A little complicated in my situation, as there's evidence to indicate I had an asymptomatic acute SARS2 infection and I'm judging back to a time of likely infection given that there was zero documented community transmission nationwide for 3-4 months prior to earliest ME/CFS symptom onset.

 

[Binkie4]

For clarification, I voted more than 2 months but it wasn't straightforward. I became ill in 1986 ( Incline Village date) and saw GP who took blood and rang back to say I had a glandular fever type virus ( reactive lymphocytes ++) and I needed weekly blood tests. I was one of 3 members of staff teaching in a sixth form college who became ill at exactly the same time; one was very ill and had to be hospitalised at 3 weekly intervals for antibody infusions. I improved in a week or so but remained quite ill ( could really only function on alternate days) and my GP called it PVFS.

Haematology continued to ask for weekly bloods then a spinal tap at 3-4 months. I still didn't feel well but returned to work for two half days a week then built up to a half time table, then 4 days. I struggled with this but explained it to myself as low stamina.

I had to stop work 13 years later due to worsening of these symptoms and eight years after that became bed bound and ME was diagnosed.

I will change the category if needed for your purposes because I think it could fit in more than one but maybe I'm overthinking it.

edit: I never felt fully well again after the " glandular fever".

 

[Sasha]

Interesting question! Bear in mind that some of us are remembering decades back, though. I remember an initial feeling of being under the weather and too unwell to risk travelling abroad as I'd planned in case I became too ill to get home, and then getting smacked with something flu-like and things getting immediately much worse, without a gap, but now I'm second-guessing myself. I've no recollection of a gap but after all this time, I could be wrong.

 

[Kitty]

I haven't voted because I'm not sure. I was definitely exposed to EBV (my boyfriend had it) but I didn't have any symptoms myself in the weeks following.

I had an insidious onset later that year, at least three months after he was ill. My trigger might have been EBV—I was at the age when infection is common and at one point I had a prominent swollen lymph node in my groin—but there were no other obvious symptoms. I was seeing the GP about a severe lack of energy and the sudden appearance of a lot of candida overgrowth and tinea corporis.

 

[RainbowCloud]

I’d like to vote but I don’t know what caused mine, however I had a nasty flu-like illness and for the next three years until the onset of my ME things ‘started going wrong’ - 2 weeks of migraines, random super fast bouts of tachycardia, muscle issues. I strongly suspect the flu-like illness had a problematic effect on me but I can’t know it was that. Figured I’d note down here anyway as sometimes accounts are useful anyway! Thanks!

 

[Michelle]

There was definitely a gap but it's difficult to remember how long it was. I started having frequent flu-like illnesses within a month or two of my first period and developed IBS about that time or a bit later. Of course, that was over 40 years ago so I might have had an unremarkable, mild respiratory virus that I no longer remember.

The reason the connection with menarche is interesting is that when I entered perimenopause, my IBS disappeared. I had a very severe crash about a year into it (needed to lay flatter than flat, like others in the other thread, couldn't get more than 250 calories/day down, etc.). Yet 14 months later, I almost abruptly stopped crashing for days or more from a 6-block trip to the hospital and found sensory stimuli less enervating. At 18 months I was up and doing simple DIY stuff around my home/balcony garden (but only in the summer; late winter/autumn have had me regressing to the mean, as it were). However, 6 weeks ago I started Estradiol for severe hot flashes (up to 31/day! ) and to protect against osteoporosis (both Mom and Dad have it as did their mothers and their mothers' mothers). Now my PEM is totally back as is my IBS. Curiously, my ability to write is also back. Back when I was able to putter around my apartment/balcony garden, my brain fog was so bad I struggled to write simple emails or texts. Now I'm essay writing again (though it's very slow going). Go figure.

 

[JemPD]

I dont know how to answer.

I got some kind of infection, initially throat & general URT, then within days it turned to what they called tracheitis, then it spread to chest infection, ear infection, sinus infection. I had loads of antibiotics but nobody seemed especially concerned, except me - it hurt so much to breathe.

Anyway it started new years eve and it was end of feb before i was able to go back to work, but I still felt dreadful, like the infection wasnt fully gone, pushed through, pushed through, staggered on recovering a bit then crashing down again. I just thought I was 'recovering' and then getting another virus a few wks later, but now I see it as having been 'mildly' affected and the pushing through causing a wk long PEM crash causing/enforcing 2-10days of bed rest, improving and then starting the process again, where 3-4 wks later i'd crash again. Repeatedly. Over about 18mnths till the final crash that caused an ambulance visit to A&E & then a month in hospital while they tried to find out what was wrong.

So I dont know what to say. I dont think I ever felt 'well' after that new yrs eve when it all started, but after 8 wks in bed i was 'well enough' to go back to work. I felt like crap but i denied it to myself & had a few wks at a time of telling myself i was fine. I was so heavily into positive mental attitude/visualisation etc (i gave myself the LP + GET long before it was even invented!) that i didnt admit it to myself that i was feeling crap.

So I dont know whether that would be called a gap, or No

 

[oldtimer]

I can't pinpoint an infection or starting point because it was so long ago (about 55 years) but maybe 20 years after I started feeling 'not quite right', I got a very bad cold, maybe the flu. The ME/CFS (if that's what I had) immediately became a lot worse. I never regained the same level of energy again and the variety of mild symptoms I already had immediately became worse. Since then all symptoms have slowly and steadily worsened. So there was no gap after the cold/flu episode.

 

[Wyva]

Mine started with EBV, I had no health issues before. I was ill with mono for 3 weeks. I still tried to live a normal life during the first week (even tried to work out) but it just got worse and worse, so eventually I had to stay in until I "recovered" because I was too ill.

After three weeks I felt that the infection and the mono it caused was gone. I was much better and considered myself recovered. I jumped back into my life immediately, started going out, meeting friends again etc. However, although I felt definitely much better, I could feel something wasn't right but it felt minor. I expected it to be gone in no time.

About a week later it wasn't minor anymore and it turned into a significant health problem that forced me to stay in my apartment, often curled up in bed and it took me about 6 months to see some (not huge) improvement.

So I had some sort of week-long gap, however, I wasn't fully recovered, just very close.

 

[chillier]

I believe it was a 2 year gap though that's long enough that the actual relevant series of events could be different to how I perceive them to be.

- 2010 'infection' with symptoms of intense fatigue and some neurological symptom where my fine motor movements were sluggish, lasted 3 months then recovered.

- 2010-2012 Very gradual deterioration of health where I would get basic colds and bugs increasingly frequently but still studying full time.

- mid 2012 more rapid slide into poor health over about 3 months, brain fog symptom begins and fatigue eventually bad enough I have to quit studying/working completely.

- periods of relative improvement and relapse since then, big relapses seem to be dominated by a brand new symptom which sometimes eventually fade. 2016 relapse fasciculations and numb body parts and extremities, 2021 relapse gut problems/ difficulty digesting food.

 

[EndME]

For Long-Covid there was a study on this subject early on the pandemic:
Characterizing long COVID in an international cohort: 7 months of symptoms and their impact

From what I recall the ME/CFS-like LC symptoms tended to occur much later than perhaps the LC symptoms seen in those people that resemble more of cold symptoms that haven't gone away (cough, shortness of breath).

I don't think anybody ever did a rigorous study on the subject with a follow-up period though (and your question here is of course about ME/CFS rather than all different types of LC).

 

[boolybooly]

If there was no well gap at all then the answer is no even though the ME/CFS may have come on weeks after the trigger started.

OK, there was no well gap, but it is not simple.

This is how it went with ACAI (atypical chronic active infection).

ME began during an HSV2 infection after prior EBV, 4 years before. The initial symptoms cleared up but while I still felt post viral weakness from the first episode a second episode started with symptoms of equal severity. Then a third etc etc for 30 years, each episode lasting about a month.

During the second episode I would say ME began as I began to feel zombie like so there was no gap where I felt recovered and has not been since.

There was a partial recovery two years later, less zombie like for a few months though with ongoing recurring virus, which I blew due to being too active causing crash and relapse, having received zero advice about pacing and viral recovery because none of the several doctors and alternative practitioners I asked recognised my condition. Even that at its best was not complete recovery. So no.

 

[InitialConditions]

I'm not going to vote in this because the gap in my case is slightly different. I had a bout of acute stress in April/May 2012 and seemed to have some sort of virus—sore throat etc. Was prescribed penicillin V, probably wrongly. From then on I had mild fatigue, tinnitus, and lots of muscular/fascial issues. But I finished my PhD and then continued work in academia. Still exercised but always felt I wasn't physically where I should have been. Now, it's hard to tell whether this was mild ME, but I suspect not because I don't recognise PEM from that period. I certainly wasn't fully well, though. Along with fatigue and tinnitus I struggled being in an office all day, was totally restless at the computer, and was at the osteopath at lot becuase of musculoskeletal issues that just didn't go away.

It wasn't until late 2016 that things went south. Exercise became problematic, new symptoms came. I class that as the start of my ME.

 

[Sly Saint]

2001 I had some kind of virus, thought it was flu. Took 5 days off work spent in bed. Went back to work but was sent home. Saw Dr about a couple of days later. Was prescribed antibiotics for bad chest infection. Didn't resolve, more antibiotics. Then diagnosed as having pneumonia. More antibiotics. A month later I felt much better and asked the Dr to sign me back on so I could go back to work.

The day back was full on, including the long travel time to work. I struggled on the walk home from the station. Don't know how I got to work the next day but come lunch time the HR manager drove me home.
For the next few weeks I would have short periods of feeling OK (hours not days) but then this wave of feeling heavy, dizzy, and generally unwell would come over me. It was like a dodgy electrical fault that one day switched off power and just never came back on.

I was diagnosed with PVFS (post viral fatigue syndrome) and then about 6 months later with ME by my GP who had been my GP for many years and knew me and my medical history well. At no point did he ever suggest that it was a psychological issue, he was always supportive.
He continued to sign me off from work for the next 5 years, wrote letters to my employers, and was willing to help me try whatever provided the NHS would allow it (most of it they wouldn't, including tests) but I did try a brief course of anti-depressants but only because of an article in AfMEs magazine. I couldn't tolerate a full dose, and they did nothing for the ME so I stopped after a few months. We also tried back to back courses of various anti-biotics.
AFAI remember the only 'treatment' specifically for ME was in Bristol, which was out of the question.

I moved home/area and since 2006 have had no Dr 'treat' me for ME. The diagnosis was changed on my notes to CFS, and any reference to me having any kind of illness was always framed as ' a patient with chronic fatigue'.

 

[Mij]

I didn't answer the poll because the options don't describe my experience.

I had a sudden viral onset that started with intense vertigo one morning. The vertigo went away after 3 days. I was vaccinated 3 weeks later (tetanus, rubella and tested for HepB). I felt 'ok' and was able to exercise without PEM but didn't get a 'high' from exercise- I felt flat.

I developed a very mild sore throat/ear and had a grinding feeling in my gut(possibly undiagnosed h pylori at the time).
I was vaccinated again x2 with Hep B the following 6 months and the vertigo returned for 2 days. I went back to see my GP and was dx with strep throat and had 'extremely' elevated anti-thyroid antibodies.

I really noticed my energy/stamina decreasing after the second Hep B jab so decided not to the get the 3rd.

After power resting for 9 months I felt 'recovered' and returned to work. I had a relapse 3 weeks later and felt worse for the next 6.5 years. Eventually I stared improving again, around 90%, but when I stared exercising I discovered horrible delayed PEM.

 

[rvallee]

My course was too chaotic to have a single point in time at which things began. There are clear downturns, but they had a long tail of slow and fluctuating symptoms that made it hard to function. All of those downturns happened soon after too much exertion in too short a time.

But from reading tens of thousands of reports in LC, I can say that I've seen them all and everything in-between. Some cases never get better after the acute illness, LC is just a continuation of it. Some had a clear but short-lived remission, which in many cases seemed like a recovery. Some had a longer period of being well in-between. Some had an in-between period of being only mildly impaired. In some the downturn was abrupt, usually caused by too much exertion, in others it was over periods spanning from days to months.

Some had all of the above, then either a remission or full recovery, a full resumption of normal life, then a later relapse/crash. In some it was weeks, others months, others over a year. I've seen so many reports saying they had fully recovered, then crashed worse than before. It's often but not always sudden. Usually exercise, but also infections or periods of increased exertion such as working hard (which would normally be classified as 'stress'). In most symptoms tend to come and go without sense or reason, even with being careful. Including for some in 'remission', the definition is definitely flexible, people adjust their measure of what is normal.

I've seen all possible scenarios, and combinations and permutations of. Maybe there are more frequent ones, but it appears to be largely a chaotic process with far too many dynamic variables.

This is a general picture from tens of thousands of comments. I don't think it tells us much more than looking at symptom clusters, which can be found, but will vary for any cohort, and even within a cohort depending on when it's assessed.

 

[EzzieD]

After my 1983 respiratory flu, which everyone I knew had and we were really floored for a couple of weeks because it was so severe, we all recovered and went back to work. All seemed fine for about 3 weeks, then suddenly I started feeling weird, getting odd symptoms and sensations I couldn't make sense of. I didn't think to relate it to the virus, just couldn't understand why I kept going all faint and feeling ill. I shrugged it off as long as I could but one day it was so bad I had to lie on the floor in the ladies' restroom at work, hoping nobody else would come in and find me in that embarrassing position! At that point, I had to give up work. Then began the stressful and exhausting round of trying to find out what was wrong with me, with most doctors claiming it was 'anxiety' because my routine blood test was normal, until post-viral syndrome or ME was finally arrived at.

When I relapsed in 2005 after having been recovered for 15 years, it was thanks to a severe gastrointestinal virus that again, everyone at work got and we were all sick as blazes with it for a few weeks. And again, after we all recovered, I was hit again after about 3 weeks, followed by much the same as in 1983: not being believed, then a 'CFS' diagnosis, and losing my job due to being too ill.

And now, when I got COVID in 2022, my husband and I were very poorly for a couple of weeks. Then, while he thankfully made a full recovery, I seemed to have recovered too but again, about 3 weeks later, weird symptoms occurred just like what happened the two previous times, and I still haven't completely recovered from the additional set of new symptoms on top of the ME. Ugh.

But there has been a distinct pattern with all 3 infections in that it was about 3 weeks between thinking I had recovered, and it coming back and turning ugly. I wonder what the significance could be of that '3 week' timespan?