Onset patterns of chronic fatigue syndrome and myalgic encephalomyelitis (2018) Evans & Jason

I've not read this yet myself, but saw it on social media and thought it might be of interest.

Convenience sample though so can only really be a starting point for further investigation.

Open access:

http://www.openaccessjournals.com/a...ue syndrome and myalgic encephalomyelitis.pdf

 

I mean what other onset pattern could there be?

 

That is a good question, other then sarcastic answers i can't think of any

 

There probably is a lot of variability even in what is described as a "sudden onset." The onset of ME/CFS is often described along the lines of "a flu from which the patient never recovers." In my case, I got a terrible infection (possibly strep throat) and, after a couple of weeks, felt recovered, though possibly still a little tired. It was at that point that I got hit with an initial attack of dizziness that I considered my "onset" simply because it was so dramatic. Blood tests showed that my immune system was probably still fighting that weeks old infection. After seeing my doctor, I felt better for a few days but I noticed that my balance was still off. Then my legs got wobbly, as though I'd been running to the point of exhaustion. Multiple things went downhill after that until I probably reached my nadir about six months after that initial infection and sore throat. [Actually, in subsequent months and years I would develop severe IBD symptoms, so you could argue that it continued to get worse after six months.]

Is that sudden or gradual onset? Does anyone develop their full spectrum of symptoms over the course of a few days? It's not a rhetorical question. I'm genuinely curious.

 

Maybe I'm misreading/ not understanding, but his take seems to reasonable to me. My understanding of this is:

The current understanding of either sudden onset or gradual onset is too simplistic and misses a lot of detail that might provide a lot more information that could lead to better & more tailored management advice etc.

 

As this is a " systems" condition, whilst onset is important, i think there have to be things in place to create the perfect storm. This condition exploits any inherent weaknesses.

Its a common response, but genetics /epigenetics/ past histories may determine the route and where the baseline settles.

Small things that don't seem important in themselves, when added together slter thr picture.

It' s s bit like a structure in a storm. If all the structural connections are in good condition and per the original spec, then damage is limited . If there are fixings missing, or deteriorated, then these will determine the route and final condition of the structure.

 

I think this is a disease that can linger in the background until some triggering event shifts the balance from health to sickness. The initial trigger would simply be some event that has shifted the balance point from above the healthy line into the sickness line. And these events can continue after the illness onset. The reverse also seems to be possible. The body tries to get back to health but never succeeds to achieve a recovery. In some patients it succeeds, usually early on but in the others it doesn't.

 

I think it's tricky because how does one frame each concept. My ME began in 1970, but it wasn't an 'overnight affair'. I suppose that makes it gradual... unless 'gradual' has to traverse more than perhaps 6 months? Although I had presentations of temperature control issues, skin sensitivity and MCS to some degree from birth, I can say that I entered 1970 as a really pretty healthy 9-going-on-10 year old but I exited it with a fully life-changing disease with no name. The change did happen over about 6 months I'd say. Is 6 months 'gradual' or would that still be classed as sudden? How long is 'sudden' & how short is 'gradual'? I've never been sure how to quantify my onset.

 

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It sounds like you had an acute point which was significant at the end of the six months, so I would say you were a gradual acute onset. It does sound like you may have had some kind of issue leading to ME before this though.

 

@Lilpink I missed something here. A gradual acute would be a staged onset. So you can say both. You had a gradual acute onset or a staged onset. I'm a bit fogged but I think this is how I would take it.

 

I got chicken pox aged 33 and gave it to my son aged 2. Neither he nor I developed ME but his sister did. He got Type 1 diabetes aged 17, an autoimmune disease....

 

This is pretty close to my own onset pattern. Really bad flu-like illness in late December 1989. Then I thought I was recovered and went back to work after the new year. Sometime in January 1990 I started getting dizziness, lightheadedness, feeling out of breath.

Over a period of 3-4 weeks I cut back on going to the gym, went to several doctors (no help, initial diagnosis was inner ear infection due to the dizziness), and then stopped going to the gym at all. Then I started having to take sick days from work.

By the time I went on full medical leave in early March I had gotten to the point where I had to take a sick day to rest after every work day.

So, I don't have the classic "got a flu-like illness and never recovered" which is what I think "sudden onset" means to most folks. But I also don't have the "slowly got worse over several years."

I think my illness onset is better described by the word sudden than gradual but I really don't know.

 

This is like mine. I had a virus, then the dizziness and lightheadedness, then more viruses, with exercise becoming slowly harder and harder. I used to exercise every day, but I kept fainting. Then I cut down. I had a pattern of crashes over a decade. A few years ago, I crashed again, and it's been worse than ever. So there was a definite onset, but it certainly got gradually worse. But I'm not sure where it fits by this study.

 

My onset was also a sudden vertigo attack. The interesting thing was that I was able to run without 'fatigue' for the next 6 months but I didn't experience a 'high' after exercise. I felt flat.

 

I got sick in the middle of 2015, at that time I was feeling super healthy and I was very happy with my routine of surfing/swimming, yoga.
Also, I had stopped working during weekends a few months before.
One day, as soon as I got into the swimming pool , I felt a kind of a strange tiredness....
one or two weeks after that day, I was so tired I couldn´t walk more than a block...widespread myalgia and palpitations...
I recovered rapidly but would crash after minimal exercise...
It took me one and a half year to figure out what was going on.

 

Relapse/remitting. This onset is actually far more common than has been discussed in the literature.

 

I had definite periods of illness versus wellness when I was younger.

 

The full PhD on which this is based can be downloaded from here:
http://via.library.depaul.edu/csh_etd/117/

 

It is interesting on a human level to see the figures with all the details about different individuals' lives and their level of functioning and symptoms. You rarely get this amount of detail on an individual in the published paper (usually quotes from different individuals are mixed together).