RE: Contagious?

[Guest guest]

Hi and Welcome Dani…well, this is an issue of great controversy for over 20

years, the “CFS” camp declaring it is not ever infectious…and the ME

research indicating that it is, at least in the initial stages of infection

– when you very first got ill. There is also the issue of a susceptible

immune system, and I hear you when you say this man’s is already compromised

by the MS. I have heard of a few anecdotal reports (ie. not backed by

research, just a few people’s experience) of a lover going on to develop it

too. This raises the issue of whether or not it is more infectious with

intimate contact.

All that having been said, I will offer a radical opinion that if you can

and have found love, go for it!!!!! Things happen in life anyway, what if

you resisted and then you or he went on the develop cancer or get run over

by the proverbial bus? IMHO it is worth the quite small risk. But how does

he feel about all this? Ultimately, you will be making this decision

together. Don’t presume to know or decide what is best for another person.

Perhaps he is all too willing to live with that possibility, however low,

because he loves you, and that is what would make him happy, more than being

safe – hey, if you can catch it on a train, he isn’t really safe anyway.

Anyway, how did you meet this person when you have severe ME?? Online?

Enquiring minds want to know! Good Luck, Aylwin xo

[Guest guest]

Hi,

 

I doubt that it is even moderately contagious, as most PWCs have family members

and caretakers who are in close contact with them for years and do not get it.

There is a slim possibility that it can be spread by blood contact (Red Cross

etc won't take our blood for transfusions), but it is less contagious than, for

instance, any version of hepatitis, or HIV.

 

There are some cases where several family members come down with CFS at close to

the same time. Most likely that is due to a common infectious agent - a parasite

or virus that is spread to all of them by the environment (like ticks, bird

droppings, fleas which are considered part of the environment) at close to the

same time.

 

There is a genetic component at work also. There is something, probably in the

immune system, which can be inherited and is a " risk factor " for CFS - those who

have it as more susceptible to the initial infection that leads to CFS (or at

least some CFS - there may be several ways to get to the same syndrome).

 

Jerry

 

 

<<<<<

i have never heard of it being contagious.

Diane    

[Guest guest]

No, I have been sick of over a decade, long before we knew anything

like what is now known, and never have I EVER heard ANYONE say this

is a contagious thing. Now that so much more is understood, we now

alot about what is going on in our bodies and what brought it on to

begin with, and its NOT a contagious thing at all. Do as much

research as you can on ME. That will be most current, since the rest

of the world stopped using the CFS term a long time ago to refer to

cases lasting longer than 6 months that effect your daily life. The

US has been a little slow on that front, and even though they two

different terms for two different disease processes, you mostly see

it like this - " ME/CFS " . The name change and diagnostic process is

going to be a slower change so the specialists active in the movement

though that would be easiest way to get the name change in motion,

but they didnt think about the confusion it would cause. A lot of

people starated assuming they were the same. They are not. Get as

much current up to date info to avoid they myths of incorrect stuff

out there by looking up ME or ME/CFS, and start looking for a

specialist a close to you as possable that is current and well

recommended. A true diagnosis is also very important - everything

else must be ruled out. Mono, which causes many similar symptoms, IS

contagious for example. You may be getting confused by the reference

to ME/CFS being brough out by a viral infection such as mono, or from

the days when it was thought it was a viral thing, like Epstien Barr.

We know much more now. Do your research, and find a specialist, and

first maybe talk to your regular doc about any labs that should be

repeated, run, or that are new that should be done becuase the give a

good window on whats going on.

Dr. Craft

[Guest guest]

Dr. Craft

How about a pointer or two on how to make doctors believe us in our pain and

discomfort.

Diane   

[Guest guest]

Hi folks -- thanks for the responses -- Folks might find this helpful:

 

http://www.ahummingbirdsguide.com/outbreaksinfectiousquotes.htm

 

The main period of infectivity of M.E. peaks at the time just before symptoms

appear through to the initial acute phase of the illness (which lasts for

several months or in some cases years). M.E. appears to be highly infective but

also highly selective. Modes of transmission are thought to include: casual

contact (respiratory), salivary transmission (eg. kissing), sexual transmission

and transmission through blood products. There is also evidence that

asymptomatic carrier of the illness may be able to pass the illness on to others

for a brief period following their exposure to the illness. (During the recovery

and/or chronic stages of the illness however M.E. does not appear to present a

significant infective risk).

 

Still, I am worried... one never knows...

Hi Aylwin -- yes I met him online -- on a dating site for persons with

disabilities.  And what a lovely heartfelt letter you wrote -- I must copy it

and show it to him. Thank-you!

Best to all,

Dani

[Guest guest]

What everybody is forgetting is that there are records of EPIDEMIC outbreaks

going back over 60 years. An epidemic is INFECTIOUS. How or why could

members of an orchestra (Raleigh NC outbreak, 1984) get ill at the same time

with the same thing? It is indeed true, as it is for every infectious

disease, that there is never a 100% transmissibility rate or mortality rate,

or we would have been extinct long ago.

Some people are more susceptible than others it is true (note the 80%

history of allergies vs 20% of the general population, a sign of immune

dysfunction), and again, scientific research has shown that the infectious

period is during the prodromal (preliminary) stage, or after the virus has

been acquired but before developing the disease. And, at that stage, it is

CASUALLY transmitted, as in, you could catch it on a bus. I got ill after

Expo ’86 in Vancouver Canada as did thousands, a classic epidemiological

scenario, crowds from all over the world.

But, with prolonged intimate contact, it is a crapshoot depending on the

immune status of the uninfected party. I have heard many, many anecdotal

reports over 22 years of partners going on to develop ME. Did they pick it

up somewhere else, or from their lover? More research is needed.

It certainly is true that it can run in families, and the ”gene expression”

research is some indicator of this, though the research population was

hopelessly contaminated by those who do not have neurological ME.

Actually, it was the CDC who INVENTED the name CFS on purpose, planted the

misnomer “Yuppie Flu” in the press and so on, it was a huge cover-up of

multiple American epidemic outbreaks in the 80’s/early 90’s. The infectious

nature was deliberately hidden. Before that, it was known as ME since the

fifties, and before that Atypical or Non-Paralytic Polio.

So dig a little deeper and all into the history of ME, it is

comforting to think it is not infectious, but the facts and research show

otherwise. Jodi’s most excellent hummingbirdsguide site has links to all the

research. Aylwin xox