Are we "high-risk" patients?

[Frank22]

Hi Everyone,

I was just curious what your take is on: if the community with CFS/ME are high risk patients regarding contracting viruses etc.? Obviously the Coronavirus has me thinking to be extra careful these days, but I have not been sick since my initial CFS/ME onset (almost 5 years now). I attribute this to our immune systems possibly being in "overdrive" and continuously thinking we are fighting something that may not be there. The hard part is we don't have many doctors to seek advice from on this issue so wanted to communities input.

What do you all think? I appreciate the discussion.

Thanks

 

[andyguitar]

I attribute this to our immune systems possibly being in "overdrive" and continuously thinking we are fighting something that may not be there

I would agree with this @Frank22

 

[belize44]

I agree, too, although unfortunately this overdrive is doing a lot of damage in terms of inflammation. I haven't had a cold in two years, or a virus, but feel as if i am fighting something off all of the time!

 

[Rufous McKinney]

I Keep getting some kind of stomach flu while hardly getting colds or normal flus.

1) we have lower exposure as we go out far less.

2) my stomach flus may not actually be a flu...or maybe I am carrying some dormant Norovirus...in my IBS-d gut.

Maybe our less-effective immune system will produce a lower cytokine storm and we will be less likely to succomb....
(somebody else have an opinion on that?)????????

Generally- I think we are at higher risk....of complications and lung issues....worry me.

 

[Rebeccare]

It's hard to say! I can only speak to my own experience. In general I've not gotten ill much since coming down with ME/CFS. In the first year after I got ME/CFS, however, I did have the flu. I then developed pneumonia, which is not an uncommon complication but one which I hadn't experienced during two pre-ME/CFS bouts of flu. Perhaps a coincidence, perhaps not. The good thing is that, after recovering, I didn't experience any lasting effects from having been so ill--a year-long remission actually began just a few months later.

 

[Rufous McKinney]

It's hard to say! I can only speak to my own experience. In general I've not gotten ill much since coming down with ME/CFS. In the first year after I got ME/CFS, however, I did have the flu.

I think general age and all the other standard factors play a role.....so ME alone isn't the only issue...like I"m more concerned about my 36 year old mildly asthmatic daughter

than I am my 74 year old husband....who exhibits like zero lung stuff. I don't think he has coughed in the entire 40 plus years I"ve known him. He gets sinusy issues...and then will throw up....for no reason...from sinusy stuff.

So he is errand boy. (and as a delinquent, wont' wash his hands, won't avoid chatting, won't stay home if he needs his bottle some something). When you marry the rebel from 1968, they are still rebels at 74.

 

[ljimbo423]

I was just curious what your take is on: if the community with CFS/ME are high risk patients regarding contracting viruses etc.? Obviously the Coronavirus has me thinking to be extra careful these days, but I have not been sick since my initial CFS/ME onset (almost 5 years now). I attribute this to our immune systems possibly being in "overdrive" and continuously thinking we are fighting something that may not be there.

I think a lot of us but not all, are not as likely to get the virus, for the very reason you say. I haven't had a cold or a flu in many years.

Frankly, I can't remember the last time I had one. It's probably been at least 10-15 years, maybe longer. Clearly my immune system is in overdrive and any virus that tries to sneak in, gets clobbered!

EDIT- Although I am washing my hands a lot now, just to make sure I don't get it.

 

[AnnieT]

I have always had cold and other viruses.... maybe just once a year though.

 

[valentinelynx]

I have another way of explaining why many people with ME/CFS don't appear to contract viral illnesses often. I had wondered about this and Dr. Kaufman had come up with the same idea from his history of treating HIV patients. He observed that HIV patients rarely seemed to get colds or flus, and observed a similar pattern in ME/CFS patients. The reason being that the feeling of sickness with many viruses comes from the immune response to the virus, not the virus' presence. Thus, we may actually get infected with the viruses but aren't aware of it because our immune systems don't react it to the infection. Whether this is true of COVID-19 I don't know, because I don't know if the severe respiratory illness that some get in the second week of illness with COVID-19 is caused by direct viral injury or by immunologically driven inflammation.

 

[xebex]

I have the bizarre idea that if the world succumbs to the virus all us poor ME victims would be the only ones “well” enough to help the sick. I haven’t had an illness in 8 years! Am always the “healthy” one when the family comes down with a bug!

 

[ljimbo423]

I have the bizarre idea that if the world succumbs to the virus all us poor ME victims would be the only ones “well” enough to help the sick. I haven’t had an illness in 8 years!

You might be right! I haven't had a cold or a flu in 10- 15 years or more. I'm more concerned about my 33 year old son, that doesn't have any chronic illnesses but smokes and is over weight.

 

[xebex]

@ljimbo423 i've even thought of writing a piece of speculative fiction about it! Novel outline already written!

 

[ljimbo423]

@ljimbo423 i've even thought of writing a piece of speculative fiction about it! Novel outline already written!

Go for it!

It would be an interesting read and maybe even a better movie! I love viral outbreak movies for some reason. The movie "Outbreak" with Dustin Hoffman is one my all time favorites.

 

[xebex]

Go for it!

It would be an interesting read and maybe even a better movie! I love viral outbreak movies for some reason. The movie "Outbreak" with Dustin Hoffman is one my all time favorites.

thanks! i actually wrote it way before this virus outbreak thing happened, but yes its based on my love of zombie/virus movies sadly i have too many plot holes in my outline and now not enough energy to rewrite. but one day i'll do it.

 

[ellie84]

I catch a cold at least once or twice per year and it takes me weeks to recover completely. There was a period it used to be even 4-5 times per year. And some years I catch the flu too. To be honest, I've been having lingering cold symptoms in the last 3-4 weeks after a cold almost a month ago. It might even be THE virus, but I don't have any of the major symptoms, so I have no means of knowing it right now (I already told my GP and only people with major symptoms can get tested).
But then I'm pretty sure I don't fit in the "viral-onset" fatigue group, maybe I don't even have CFS... although I certainly have chronic fatigue and a lot of other things.

 

[xebex]

@ellie84 My ME was triggered by a vaccine after 4 years of extremely stressful life but I have also tested positive for HSV2 CMV and EBV, I would also get very nasty chest infections every winter before I got sick and severe migraines. I don’t Remember coming down with any of those viruses though, and I haven’t been tested for hhv6 yet. When I got ME my colds disappeared and so did my severe migraines, just plagued with chronic daily migraines instead (which thankfully have more or less cleared up) when I crash I get flu like symptoms and I haven’t yet figured out if that is a viral reactivation or just “sickness behaviour” I dont’t think it matters whether your CFS is virally triggered or not it’s all about how your immune system responds to the stressor. Some catch everything some never do. I’d say if you have PEM it’s likely that what you have is me/cfs. No PEM/PENE and it’s likely another fatiguing condition.

 

[NickMDal]

I don't think ME protects you from viruses. I'd speculate that reduced social activity reduces your risk. ME patients should consider themselves higher risk. No science here but I think generally when ME patients get sick, they experience greater than normal symptoms. My colds, though less often are of flu severity. I've had two since getting ME and in both cases had hallucinations and some night time delirium. An inflamed central nervous system doesn't handle illness so well.

 

[xebex]

@NickMDal there's a lot of anecdotal reports that there is a subset of pwME who don't get sick, i'm one of them, have a husband and a kindergarten aged kid, she's always bringing home colds and vomiting bugs, hubby gets them, but i don't. One time the entire extended family were sick puking violently, not me! There's also reports that when some pwME do get sick they actually feel better, this happened to me the one time i did get a mild cold in 8 years , i actually had a lot more energy, it's a strange phenomenon!

 

[Mary]

I seem to be fighting a minor respiratory illness most of the time. This has been going on for years. I will have slight congestion, blow my nose a little, my voice gets a bit stuffy, and that's all the external symptoms, no fever, though it does affect my energy. And once in awhile I'm symptom-free but as soon as I crash (PEM), it all comes back.

Last November/December, I got very sick for the first time in 20 years - severe sore throat such that I couldn't talk, it was painful to breathe and very painful to swallow, and then I got a lot of congestion, which went into my chest, and ran a fever for the first time in forever. I finally went to the doctor who said I didn't have the flu (she ran a test) but did prescribe z-pack which I don't think did anything. I was taking andrographis and echnachea, and then finally added in colloidal silver, and something finally knocked it out. It was severe. And I relapsed once, about half as bad but recovered again. Anyways, I found myself wondering if getting so sick was a good sign? that my immune system was able to mount a response like that? Or was it not a good thing getting so sick - I don't know! But I guess I do know now my body is capable of severe flu/cold symptoms, fwiw . . .

 

[xebex]

@Mary - that sounds a lot like the chest infections/colds i had before i got sick. I imagine it signals some kind of immune shift, but its only a good thing if you feel better after i guess!