ME associated with flu, but not vaccine

[SOC]

That may be nothing but I do always wonder if I had pulled back a little on my busy lifestyle, whether I might have prevented myself getting M.E.

My current guess is that we couldn't realistically have prevented ourselves from getting ME. Lifestyle changes might have postponed the inevitable, but I think we've got what we've got and it was going to bite us eventually. It's normal for us to try to look for ways we could have been in control, that something we did or didn't do would have changed the path, but I think that's probably related to the fairness myth or the control myth. Life isn't fair and we aren't in control. Sometimes shit happens. This shit happened to us and behaving differently probably wouldn't have changed it.

 

[SB_1108]

I had some symptoms beforehand after catching a bug in India and major mold exposures, but I developed full-blown ME/CFS after getting the flu (theorized to be H1N1) in October '09. My roommate got ME/CFS after getting the flu. Not many patients were tested for the flu at the time because you usually don't go to the doctor with flu symptoms if you are seemingly otherwise healthy.

This is why this forum is comforting...
I also developed ME/CFS after getting the flu in October 2009. I went to the doctor with my flu symptoms and they didn't see any reason for testing because they were "sure it was H1N1" - everyone seemed to have it at the time. They sent me home and told me to wait it out. That was 6 years ago!

But like others have said, I had some symptoms beforehand. I think H1N1 was just the straw that broke the camels back. Since I was a child, I had sensory sensitivity issues, then in High School I developed IBS after a stomach flu. I seemed to get every other contagious illness that went around for years but stayed active and continued what I consider a normal life for the next decade or so. In the six months/year before I got sick, I was under a lot of stress but relatively happy regardless. Several months after H1N1 I also got the stomach flu and that made everything way worse.

One idea I have is that our illness may be at bottom an immune disorder that's been in place a long time, either as a genetic abnormality or an unknown pathogen (like HIV was) that has been in our bodies a long time. The multiple pathogens identified in PWME, none of them with enough frequency to be considered the cause of the illness, could be secondary infections. As in HIV, those secondary infections would be highly problematic, but not causal. They may be what's causing most of our symptoms (which is why our symptoms differ somewhat-- different secondary infections) so treatment is critical, but that doesn't get at the root cause of the illness. Again, like HIV.

Yes!!!

 

[BurnA]

Yes, I have thought of this before. For example, I have wondered do anaesthetics really cause it or do they just bring out the syndrome which existed there already.

In my own case, I was a high functioning multi-sport athlete before I got an infection when 16 so think it was the infection that was the trigger.

Though a couple of years earlier I did start to feel tired by around 9pm at night: nothing like ME but did go to the doctor once about feeling tired. That may be nothing but I do always wonder if I had pulled back a little on my busy lifestyle, whether I might have prevented myself getting M.E.

I often wonder this too but we can't blame ourselves, we did what we did because we enjoyed it. I loved cycling so went training all the time, then I got a sore throat didn't think much of it so didn't slow down, then by the time it developed into more flu like symptoms of course I lied low but didn't prevent Me/ cfs. I will never know if I could have prevented it or not ...maybe when more is understood people will be more knowlegable about onset. But even though we feel that our lifestyle played a part there is no evidence to suggest this I think ?

 

[natasa778]

I suspect this may true of more of us than we currently realize. We may have had ME for years (maybe all our lives), but it wasn't recognized until something sufficiently damaging knocked us over the edge into disability.

I often think about the history of HIV and some of the similarities to our history. For years the thinking was that the disease was AIDS, which was recognized when patients developed serious infections from pathogens ordinarily controlled by the human immune system. All AIDS patients were very, very ill people. Once they discovered the cause, HIV, they realized that the majority of patients with the disease were not those severe AIDS patients, but people who appear healthy or nearly so. The AIDS patients were just the easily-identified severe tip of the iceberg.

The same could be true for us. What we see as "real ME" with PEM, neuroimmune manifestations, and disability (50% reduction in activity level) may be only the severe tip of the iceberg. The illness itself may exist in people who currently don't have the symptom set we think of as ME. They may be walking timebombs, just waiting to encounter the wrong trigger -- a pathogen, a vaccine, who knows? -- that sets off the cascade that spirals down into ME. Or maybe it's just a matter of time for some people as their body systems degrade slowly from the disease without the need for the straw-that-broke-the-camel's-back single pathogen.


...
Of course, I could be completely wrong. This is just one of a number of my random speculations about ME.

I believe you are SPOT ON

 

[Hip]

In the video on this page (at timecode 2:07) a very interesting account is given by Prof Carl-Gerhard Gottfries, about the Asian Flu (influenzavirus A subtype H2N2) of 1957, which seemed to precipitate ME/CFS in a number of patients seen by Prof Gottfries in Sweden. Gottfries himself also then developed ME/CFS after catching this influenza virus. (Direct link to the video on YouTube here).

Thus at least for this H2N2 subtype of influenzavirus (the Asian Flu), it seemed to be able to triggered ME/CFS.