Symptoms in Family and Friends: Has Your CFS Virus Spread?

[Hip]

Does anyone here have any stories of health problems suddenly arising in family and friends that you suspect are due to the virus that precipitated your CFS (assuming you had a definite viral onset to your CFS)?

The virus that precipitated my CFS circulated among friends and family, and caused a lot of characteristic symptoms in the various people it infected. These symptoms were so characteristic that it was obvious these people had caught the same virus. These characteristic symptoms included:

Chronic sore throat
Constant congested nose/post nasal drip
Depression
Anxiety
Loss of desires and sense of pleasure
Memory problems
Sleepiness and a tendency to fall asleep more
Higher levels of fatigue, and loss of energy
Stomach aches and pains
Rumbling stomach and bowels
Sudden onset of chronic flatulence
Pins and needles (paresthesia)
Sudden onset of tooth decay (dental caries)
Sudden onset of receding gums (periodontitis)
Slight wrinkling of the skin with unusual, fine-textured wrinkles a very characteristic symptom
Subtle loss of hearing acuity
Progressive hearing loss in the elderly
Sudden heart attacks (linked with pericarditis and/or myocarditis)
Viral meningitis

These symptoms appeared in many friends and family (30 or more people) that caught the same virus as me.

None of these people developed full CFS as I did, but these friends and family nevertheless manifested many of the above symptoms on a permanent basis. For more precise details of these symptoms, see here. Thus to an extent, the virus that gave me CFS has also permanently affected the health and lives of many friends and family members.

So I just wonder how many people here have also noticed something like this.

Have you been able to observe the health impacts on your friends and family, resulting from the same virus that triggered your CFS?

I know this is a somewhat taboo subject, in that some people with CFS may feel responsible for spreading their virus.

But I don't think we should feel responsible or singled out in this way at all. The way I look at it is that any social group can be hit by a virus. A virus doesn't "start" with the CFS patient; the virus just sweeps through a social group, and everyone it hits gets affected in a different way. Some people have only minor symptoms when the virus hits them; some like myself get CFS from the virus, and some have even worse consequences: for example, there was a sudden death from an unexpected heart attack in my social group, that I am almost certain was caused by the same virus that caused my CFS (this virus caused 3 sudden heart attacks and heart inflammation in 3 very healthy people, but only one was fatal).

I think it is important that we should be discussing the wider impacts of the the viruses that are linked to CFS. With there still being many technical difficulties in testing for CFS-associated viruses like enteroviruses, HHV-6A, and so forth, this simple observational analysis of the effects of a virus with a social group should provide important scientific data.

Indeed, the late Dr John Richardson, a family doctor practicing in rural Yorkshire, UK, and an early pioneer in studying CFS, spent 50 years observing the effects of enteroviruses not only in his CFS patients, but also the effect these enteroviruses had on the health of the whole family (since enteroviruses generally spread to other family members).

This type of basic, community-oriented medical observation seems out of fashion these days, but it should be an important cornerstone in the effort to survey and pinpoint the infectious causes of CFS and other diseases.

 

[heapsreal]

Its a worry, my wife the last few months has been unable to really shake this cold/virus she got and just prior to this had insomnia, now she go's between sleep problems to sleeping half the day away, no aches and pains yet or constant fatigue, seems similar to my onset of cfs symptoms where functioning at 95% and then crash for a couple of days. hopefully its the aussie winter flu, fingers crossed. If she doesnt get any better over the next couple of months i will take her to my cfs doc for a round of blood tests that i have had etc.

cheers!!!

 

[Tulip]

Heapsreal, there is a nasty throat infection/cold going around this winter that lasts for months. This virus emerged around easter or just after. I haven't met a single person that doesn't have it including myself, and we all have the distinct husky voice. So there is a good chance that is what your wife has.

On another note I have 1 family member that also has ME and 2 others have fibro, all with viral onset and all started around the same time.

Oh and when I had a really bad relapse my ex got the same symptoms and became really ill for a couple of years. He was able to return to work eventually but is still plagued by crappy health. But in his case I think that was his punishment for treating me like absolute crap

 

[heapsreal]

Heapsreal, there is a nasty throat infection/cold going around this winter that lasts for months. This virus emerged around easter or just after. I haven't met a single person that doesn't have it including myself, and we all have the distinct husky voice. So there is a good chance that is what your wife has.

On another note I have 1 family member that also has ME and 2 others have fibro, all with viral onset and all started around the same time.

Oh and when I had a really bad relapse my ex got the same symptoms and became really ill for a couple of years. He was able to return to work eventually but is still plagued by crappy health. But in his case I think that was his punishment for treating me like absolute crap

Thanks for the reassurance Tulip, there is a few people around with this throat infection and around easter is about right, her insomnia might be her worrying about me, i know how to treat her for that, medicine cupboard has an assortment of cures for sleep, lol

cheers!!!

 

[Enid]

Sad to hear of friends any family too Hip and hoping all getting best treatment poss. This observation of yours seems very important in the light of ME clusterings.

 

[Hip]

On the subject of ME clusterings: in the environment that we live in these days, researchers should be looking at ME clusterings not necessarily within geographic regions, but within social networks of family and friends.

It is people that have regular close or intimate contact with each other by sharing bathroom facilities, eating meals together, having a drink together, and kissing (in the case of couples/spouses) that are most likely to spread the respiratory viruses associated with CFS/ME.

Due to the efficiency of modern transport systems, our social networks may not necessarily reside with a tightly-defined geographic region, but may be spread over large, irregular areas, so clusterings of ME and its related virally-induced diseases really need to be analyzed in social space, not geographic space.

My feeling is that after the initial prodrome (= the few days of the fever period, when you first catch a microbe), the contagiousness of CFS viruses are quite low, and not that many viral particles are shed in the saliva or nasal mucus. So this means that in order for there to be a reasonable chance of transmission of a virus from a CFS patient (or from anyone else with that virus), you do need regular close or intimate contact.

Viruses shed from CFS patients are NOT like cold or influenza viruses; cold or influenza viruses are very contagious, and, as we all know from experience, will often spread to most members of a family, workplace or classroom, over a period of a day or two, once a person brings a cold or influenza virus to such environments. Because of their immediate contagiousness, it makes sense to analyze cold or influenza viruses in geographic space.

But CFS viruses appear to be not very contagious, and so due to this low likelihood of catching them, someone need repeated contact with a person that has these CFS viruses before there is a reasonable chance they will catch the virus. Thus if you do see ME clusters, these clusters will be only visible in social space in the networks of people that have regular close or intimate contact with each other.

I know that in my own social group, many people eventually caught my virus, and became carriers, without have full CFS (though many got mild symptoms - what you might call "CFS-lite"). From these carriers, this virus was then slowly passed to their spouses, partners, family and friends (over a period many months / years). My CFS virus produced very characteristic symptoms, even in people that did not get full CFS, so it was easy to see who had caught this virus, and how this virus spread. I know for fact that in most cases this virus was spread between people without my involvement.

 

[ukxmrv]

My ME started with an acute onset viral illness and I wasn't living in the same city as my family.

My partner then didn't get the same severe upper respiratory tract infection. I don't know about his health today as we split up. A friend in my extended circle developed ME from an upper respiratory tract infection in the same year that I did but we had no contact. I only saw mutual friends. None of my subsequent partners or friends have ever developed ME.

The most interesting and tragic thing that did happen is that two other members of my immediate family both developed ME after I moved back onto the family home decades after living apart and having ME. Took a few years and it happened to them both at entirely different times.

In my extended family I have an Uncle (by marriage with ME) and a Cousin (by marriage) with ME. Both long term and before me.

 

[Hip]

.... A friend in my extended circle developed ME from an upper respiratory tract infection in the same year that I did but we had no contact. I only saw mutual friends. None of my subsequent partners or friends have ever developed ME.....

Could be that the virus that precipitated your ME did spread in your social group, asymptomatically in most people, and reached that person who caught ME in your extended circle of friends. Or the other way around: perhaps it came from that other person that got ME to you.

It's hard to say in this case, though.

In my case, my virus caused some very characteristic symptoms in the infectees - such as a permanent chronic congested nose with very thick, heavy mucus; and strange fine skin wrinkles that look like crped paper (see here for a pic); so it was very apparent who had caught my virus and who had not.

 

[ukxmrv]

Hi Hip,

I wasn't aware of anything and didn't see any of the crepe paper skin or the nose problem. It's taken me a while to reply as I wanted to email a few people and ask.

Remember seeing the crepe paper skin on a website a few years ago (may be the same one you posted). This didn't happen to me until after about 20 years of the ME onset. I know some people would question if it was ordinary aging in my case but friends and family who don't have ME don't have the same thing.

 

[Hip]

Hi Hip,

I wasn't aware of anything and didn't see any of the crepe paper skin or the nose problem. It's taken me a while to reply as I wanted to email a few people and ask.

Remember seeing the crepe paper skin on a website a few years ago (may be the same one you posted). This didn't happen to me until after about 20 years of the ME onset. I know some people would question if it was ordinary aging in my case but friends and family who don't have ME don't have the same thing.

That's interesting,

The virus I caught seems to be quite potent, and begins to produce a fine-wrinkled crepe paper / parchment paper appearance of the skin within a year or so of catching the virus. This virus creates this fine-wrinkled effect in people even who didn't get CFS from it.

Though in fact I noticed that everybody who caught this particular virus soon experienced mild symptoms of CFS, as a permanent change to their health. In other words, I got CFS, and everyone else got "CFS-lite" from this particular virus.

This is why I am wondering how common it is to have such a situation: where a virus causes "CFS-lite" in more-or-less everyone that contracts it, and full-blown CFS in a few, more susceptible people like myself.