Contagion, really... but...

Ok, I get the part that if you have a (retro) virus it can be passed along through bodily fluids. I guess there are air-borne viruses which are pretty dramatic: Hanta virus, Ebola virus. I think you just need to take a light wiff and you're hit with these 2.

I'm no scientist by any stretch. But, this is what confounds me. If "casual" relationships, i.e. work, friends.... develop CFS from being around their CFS friends....then why are Dr.s Bell, Cheney, and physicians who treat and come in close contact with CFS patients all well and healthy? It doesn't make sense to me.

Should we all be wearing masks, like TB patients?

It's confounding.

N

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Cheney and Bell are not healthy. Cheney had a heart transplant. Around that time he decided that CFS patients downregulated into diastolic failure and POTS as a way of lengthening their life so they wouldn't go into overnight heart failure.

Bell has CFS.

I don't know about other doctors.

OTOH, many family members don't get sick. Donnica Moore says she and her daughter are fine, while if I recall, hubby got sick and son has really bad CFS.

The claim of casual transmission is just one more sloppy claim, without evidence to back up. And besides, CFS may be the "phenotypic" end result of various pathogens, not just one.
 
thanks jenbrooks, i had no idea Dr. Bell has CFS. He was actually my diagnosing MD. and, also I hardly know anything about Dr. Cheney.

I had a family member not wanting to give me a hug, out of fear of contagion.
 
My friend got it from her daughter, but she is not as sick as her daughter. She sort of has it half way and can only do things very part time. Her daughter got it severe to the point of almost mimicking late stage AIDS her immune system shut down so badly.

My mother sort of had it half way as well. She was never as sick as me, but she, too, was only able to do things part time. But then she would give me the stupid speech about how she would push herself and why couldn't I.
 
Hi, Nico.

I just finished reading Osler's Web., published in 1996. Yes, I'm slow! The evidence in the book is overwhelming in the book that ME/CFS spreads casually.

I believe it was Dr. Bell's sister-in-law, his office manager, who came down with CFS a few years into the Lyndonville epidemic. One family in Lyndonville had three or four children sick, and eventually the parents became ill, although, fortunately, they were not as ill as the children. At the end of her career, Elaine DeFreitas was quite ill with a neurological disorder. According to Hillary Johnson, Paul Cheney didn't think it was ME/CFS, but David Bell thought it was.

In my own family, my mother and I were/are the ones with ME/CFS and of the four males in the family, I would say two had/have autism spectrum disorders and another male certainly has autistic characteristics plus an autoimmune disorder and gluten intolerance. And it seems to me that illness spread from my family into the family of the woman one of my brothers married.
 
I don't see overwhelming evidence it spreads casually unless most people are infected and immune, in which case, something else is derailing immune systems as well. Flu and colds spread casually. Do you know how many cases of flu there are a year, much less over a period of twenty or thirty years? 250,000 people die of flu every year, let alone get infected.

You are talking about cohabitation or working with someone. It may be that it is hard but not impossible to spread through saliva or secretions, that at some points it is communicable (when replication rates are high) etc.
 
Wow, this is a lot to digest. I appreciate the posts and family stories. My mother - never diagnosed - has either severe ADD/ADHD and may also have traits of Asperger's. One person very familiar with Asperger's when at my house said: "your mom is a bit Aspy". It could be. I have the cognitive stuff associated with CFS plus a good helping of ADD. Dr. Bell seemed to think the ADD aspect came into play when he spoke with me vis-a-vis CFS. I was a bit suprised....but anyway.

It is a bit confounding then, not knowing all the answers. Do we hide in the proverbial plastic bubble?

My sense of the whole thing from an intuitive p.o.v. is yes to jenbrooks' take: multiple factors. And, perhaps the genetic pre-disposition toward "weakening".

An interesting, but worrisome topic.
 
My immediate family is energetic and very active. No signs of fatigue.
 
My family is fine as well but my mother died pretty young from an autoimmune disease and she had a distant relative with MCS....We have something going on there........on my mothers side of the family. Most of them were fine - longlived people but there are a few oddities.
 
My grandfather had it, my father (his son), me (granddaughter), my cousine (other granddaughter) all bedridden and/or very severely affected (+autism after illness). Other daughter died from breastcancer.

My uncle suspects granddad passed it to his children via genetics or skin contact because of the presence of a fungus. He thinks the fungus attacks the CNS and bowel.

Two out of three children have AD(H)D and the youngest has coeliakie.

Thank God my mother and partner are fine!
 
Thank you Cort and Marlene for your family stories. I had a great aunt on my dad's side who was known as the family hypo-chondriac. the story is she went from doctor to doctor trying to get a diagnosis. Even before I made my appt. with Dr. Bell, my father said to me: "you're just like Aunt Mary - how many doctors are you going to go to?" It could be that Aunt Mary had low grade CFS or...??? who knows. I was born in Lockport, NY - which is a 15 minute drive from Lyndonville - and lived there until 3 - 4. My Great Aunt, however was born and raised in Niagara Falls, NY.

The hard thing for me about all this, of course is how to be around friends, family...and honestly I would like to have a boyfriend again.
 
I have been ill for 22 years. Very sick too. Not one person has gotten this from me. I had one very long term relationship...he is fine. My mom is fine and she took care of me for years. For me, it has never been something that anyone has gotten from me. I don't necessarily believe that this thing is contractable. If it is, it's because the person who was near the host has a poor immune system. A real poor one. I have had very intimate relationships with men...they are fine. So?????
 
I do believe it may be able to be passed on. I think my sister has had mild CFS/ME for the past year, she's now starting to go to some of my specialists due to her on and off "strange" illnesses (as her doctors have ruled out the common things).

Ive had CFS/ME about 14? years and have 3 younger sisters then myself.... I think I may remember the very incident in which my sister possibly caught this illness from me.

It was Christmas (not last one but the one before) and my sister before I saw what was going on and could yell "DONT!!" had filled my glass which I'd put on the sink with drink and was drinking from my glass. I stressed out about that at the time as Ive believed this illness can be contagious for many years and worried that she may get it, then within mths, she was sick (to the point in which when doing an one hrs drive, she sometimes has to stop and pull over and sleep). That was a year ago and she's no better :(

My young cousin also got CFS/ME .. Im not sure if she came down with it after coming interstate one Christmas to spend time with me and rest of family. I did spend one Christmas with her.

(Maybe we spread it more to family members then other associates due to the closer contact. Maybe the sicker we are at the time, the more contagious we are??? We are usually housebound and homebound when very sick so may be why it stays more within families).
......

My exboyfriend... used to come down sick after every time I visited and kissed him eg sore throat, temp.... in the end he refused to kiss me anymore. Im figuring from that that I must of been passing something on to him via saliva every time I got together but his body was obviously able to fight it off. We ended up having a no kissing relationship (and always used condoms with sex) and he stopped getting ill after my visits.

I suggest to treat things like as if you had a cold and dont want to spread it eg avoid sharing glasses, cutlery .. dont lip kiss, kiss family members on cheek instead... do good hand washing and hygiene principles etc.
 
Spitfire and Tania, thank you for sharing your experiences.

I suggest to treat things like as if you had a cold and dont want to spread it eg avoid sharing glasses, cutlery .. dont lip kiss, kiss family members on cheek instead... do good hand washing and hygiene principles etc.
I have an acquaintance with Lyme. She only did "light kissing".

These stories are helpful. At least in so far as letting i.e. friends, potential significant other know, and keeping close friends & family safe. I really appreciate everyone's stories and honesty.
thank you
Nico
 
It seems clear that there is some kind of genetic predisposition in some families. I'm now sure that my Mom had ME/CFS, but was only treated for separate symptoms, (fatigue, headaches, joint pain, etc.). She died of ALS (Lou Gherig's disease). I try not to think about that... I anxiously monitor my son's tiredness and aches. It also seems that sometimes there's a viral transmission, as evidenced by some of the local epidemics, but maybe all those people had the genetic factor as well. No one knows for sure-- yet. Soon, I think.
--Emmanuelle
 
The Spitfire;bt4040 said:
I have been ill for 22 years. Very sick too. Not one person has gotten this from me. I had one very long term relationship...he is fine. My mom is fine and she took care of me for years. For me, it has never been something that anyone has gotten from me. I don't necessarily believe that this thing is contractable. If it is, it's because the person who was near the host has a poor immune system. A real poor one. I have had very intimate relationships with men...they are fine. So?????
i think you're taking this lightly just because the men you were with didn't get sick does not mean you didn't give them some kind of virus, i got sick last year in May and have been sick since and i know, i am 100% sure it was sexually transmitted, the condom broke when i was with this chick who has atypical MS and now all of those health problems she has i have, every single one of them, her last boyfriend also got sick after being with her and has never recovered, she also had a steady boyfriend before that who never got sick after being with her, it could be that some people are immune to XMRV or whatever virus cause ME/CFS, there are people who are immune to HIV and it's the more virulent retrovirus that there is, XMRV is a simple retrovirus and probably a lot more people could be immune to it for whatever reason...

I would also like to add that i have an official ME diagnosed from my doctor, the very first possible diagnostic was MS but they ruled it out, and i don't have many viruses like most ME/CFS patients, i have HHV6 and EBV but both are shown as past infections not active, so whatever it is that i got from this girl is definitely what's giving me all this health problems if it was many viruses together they would be active now and they are not, yet i have brain demyelination, IBS pain in my spleen, liver, testicles, brain fog, cognitive problems, skin rashes, and around the 6th week after being with this chick i had a "viral spike" and really all this fits perfectly with the studies they have done with macaques and XMRV..

as i stated before it may well just be that some people can fight off a viral infection really well and others can't, possibly some are even immune to the virus, like i said that are people whom are immune to HIV, HTLV causes serious disease in only 5% of those who get infected, some get it and live a normal life some others get it and develop lymphoma o leukemia in a few years.
 
To Emmanuelle and Roma, thank you for posting your experiences.

Nico
 

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