Daughter and I had H1N1 in 2009. We were sick for months and both developed walking pneumonia. Our ME/CFS got MUCH worse. It was years before she was back to her baseline, and I've never gotten all the way back.
We wanted the vaccine back then but couldn't get it because we were "not in an at-risk population."
We get killed-virus flu vaccines every year now. Reactions we've had were very mild and much better than getting the seasonal flu and
vastly better than getting the more severe flu like H1N1. This year we got the preservative-free killed-virus flu vaccine and had no reactions at all.
For the record, daughter and I both have multiple documented immune abnormalities and still have no trouble with the killed virus flu vaccine.
That isn't to say everyone will have no trouble with the killed-virus flu vaccine. It's still an idiosyncratic thing. People who have had bad reactions in the past could have bad reactions again. It's important to know, however, whether the vaccine you reacted badly to was a live-virus or a killed-virus vaccine. Most PWME will react badly to live-virus vaccines (which is why most of our specialists advise against them), but do okay with killed virus vaccines. Most of our specialists still recommend killed-virus vaccines unless you've had a bad reaction
to that particular vaccine in the past.
In the US, the flu vaccine comes in both a live- and killed-virus form, and the killed-virus form (the shot) also comes in a with preservative and a preservative-free form. The last I heard, the Pandemix (the one associated with narcolepsy) is not used in the US.
My family is not 100% pro-vaccine. We believe you have to use judgement in making each decision. Daughter crashed very badly (going out of remission for years) after getting a bunch of pre-college vaccinations. What we didn't know then was that the chicken pox booster is a live-virus herpesvirus vaccine. That's a seriously bad vaccine for PWME, especially those whose immune systems can't control herpesviruses. That doesn't mean ALL vaccines are bad for daughter, even though a vaccine crashed her badly. It does mean that we now know not to get
live-virus vaccines, but that killed-virus vaccines are much safer for us.