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

I can't answer, because I don't know what the trigger was. I started having type IV food sensitivities one day, giving flu-like symptoms. 2.5 years later, food poisoning stopped the type IV response, but the symptoms remained, and I eventually figured out that they fit the criteria for ME. I don't know whether the type IV response triggered ME, or if a tetanus booster months earlier triggered ME that triggered the type IV response. If the former, no gap; if the latter, gap. Maybe ME is caused by invisible aliens zapping people at random.

 

Like others, I find it difficult to be sure. I won’t go into the full history but there was a period of illness either side of ending up in hospital and a few cock ups. After there were ups and downs but I never got better. I’m not sure at what point it became ME. There certainly wasn’t a gap when I was fine, but neither am I sure it went straight from the infection or infections to ME.

 

Some people may suspect they triggered from vaccines that didn't produce noticeable symptoms. That might affect your results.

 

I don't think I can answer this question as well as I would like.

The reason is that there could be a factor that is important that may have caused me to become vulnerable to getting ME 10 years later. This factor was a rare reaction to an antibiotic which caused permanent major changes in microbiome homeostasis. This may be separate and not a connection to ME, I don't know.

Apart from the above my first onset of ME (1995) started with a couple of days of intense vertigo like symptom. I then came down with a nasty cold two days later. I had notable cognitive changes directly after this and to this day and I was also noticing other usual symptoms which were to get worse as I tried to keep working. In hindsight I should have given up work right away if I had known the ME had begun.

From the first symptom of ME there has not been a gap. I do wonder though whether there is an incubating lead up to ME onset from an earlier infection years before.

I voted no because once my ME symptoms began I haven't been free of it for the last near 30 years.

 

I didn't feel able to answer.

I experienced three or four lingering viral infections over a 5-6 month period. I recovered from them all except the final one which was the worst. There was no 'well gap' following this last infection and the onset of ME/CFS. I do not know which of these infections should be regarded as the 'trigger'.

 

I also can't vote because I don't accurately know. I didn't realise I was sick at all until I'd been experiencing clear PEM for a decade; I did get sick with suspected EBV immediately before the start of what I can be sure was PEM, but going back 4-5 years before that, I was unusually inactive for a teenager. I don't remember PEM in that time, even after soccer matches, but I did spend an unusual amount of time laying down. Whether that was very mild ME/CFS or a predisposition or prodrome, or just moody teenagerhood, I have no idea.

 

My onset was fairly straight forward in that I had glandular fever (EBV virus confirmed) and it is not possible to say when the acute condition ended and the ME began as there was continuity/overlap of symptoms.

I did improve over a number of years (4 years?) and regarded myself as recovered until over the Millennium New Year a bout of seasonal flue (virus not formally identified) triggered a major relapse, again their was no clear division between the acute infection and the ongoing ME. (I had not thought about it before but there was half a dozen people staying with me and none of them got the flue.)

Since, although there have be remissions and relapses, none of these remissions were anywhere near to ‘recovery’, and overall each relapse has been more severe and each remission to a lesser extent.

 

This is also my answer. My onset was mono and strep throat at the same time.

 

I can't answer because I became ill in 1995 and was concentating too hard on trying (unsuccessfully) to find my disappeared cat to think of myself much.

 

In 2011 I had a bad bout of swine flu, which resulted in sudden loss of hearing and persistent post viral symptoms including fatigue, cognitive difficulties, and effort intolerance which morphed into PEM. I knew how to pace myself and the importance of not doing too much and managed my activities accordingly. The hearing loss was investigated for other causes; none found and it was put down to the virus by the Consultant who also referred me to a Fatigue/CFS clinic.They decided that I was successfully managing my symptoms and gave me a diagnosis of ‘PVFS resolving’, and sent me to a physio who told me all they had was Pacing and I obviously knew how to do that anyway. My major symptoms of hearing loss, effort intolerance, cognitive difficulties and PEM have never fully resolved but continue to be minimised/aided by using hearing aids and pacing.

I would describe myself as not able to undertake full time work or take part in all the social activities I used to do. I have to rest for at least a day sometimes several between more active or strenuous periods. This is not enough to avoid all PEM and vaccines for Covid also take me longer to recover from as they exacerbate my existing symptoms for several weeks into months after.

I find that my cognitive difficulties are a good early indicator of my state of being. They are always present but ramp up more quickly and are more obvious to me than feeling over fatigued or being ‘not able to do’ as in full blown PEM which for me includes flu like aches and pains and other symptoms.

I have not completed the survey as I do not have an ‘official’ diagnosis of ‘ongoing PVFS’ and have never been diagnosed with CFS or ME. If I were to answer the question it would be No Gap as I could not identify a point of change from viral trigger to ongoing PVFS. It’s more a case I think of how far can I recover function or minimise symptoms, which never completely disappear and worsen in response to a variety of different factors/triggers.

 

Age of onset and gradual onset with no known infection would make it difficult to pin point.

Also, middle aged women who enter early menopause might have difficulty distinguishing ME onset. Drops in hormones and hormonal imbalances can bring on orthostatic intolerance, physical and cognitive PEM Difficult to differentiate if you're not familiar.

 

My type IV response went away after a microbiome disaster (food poisoning), so it's possible that microbiome changes triggered my ME. Viral infections seem the most common trigger for ME, but do viral infections alter the gut microbiome? I found this paper ( https://bmcinfectdis.biomedcentral.com/articles/10.1186/s12879-023-08706-x ) that shows a causal link between gut microbiome and flu development, but not a causal link between viral infection and microbiome alteration, but the data was limited. Looking at that, I suppose one wild hypothesis could be that the gut microbiome can make some people have stronger responses to a viral infection, leading to ME. Microbiome effects on health is still in its early stages, so we can just speculate about links.

 

I was only 20 years old (1984) when I had the microbiome reaction to an antibiotic. It was a very significant change that has greatly affected my life. If only there had been an interested doctor researcher that had the time and money back then I would have offered myself as a study to find out what had gone wrong. Some important information could have been found.

Ten years later I came down with ME via a flu-like cold.

 

Interested to know what you think now that nearly 50 votes have been cast, @Jonathan Edwards? What does the lack of a well gap for most (including me) suggest to you?

 

Because we don’t know how many of us looking at this don’t recognise a specific trigger or how many with gradual onset if the longer the gap between any possible trigger event and the ME onset makes any possible link more tenuous, it is difficult to know how meaningful these figures are.

Objectively I can not conclude my glandular fever was the trigger of my ME, though I feel confident in assuming it was because there was no gap between the acute infection and the chronic condition. However the longer any gap the harder it is to make that assumption.

 

I was assuming that only people that believe to know that they've had a specific trigger (an infection, an accident etc) would be answering the poll, since the question implies that people are able to identify a trigger in the first place?

 

This is what JE said
"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."
So I'm not sure now what qualifies as a 'gap' as opposed to a very temporary improvement followed by rapid decline.