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How many people have been ill with CFS/ME for over 20 years?

JAH

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This week marks year 27 for me. April, 1987, acute onset, flulike symptoms. Seems like we have a late 80's cluster. I've thought we should do a poll here on PR for year of onset. Sad to say my health just gets worse...JAH
 

CFS_for_19_years

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This week marks year 27 for me. April, 1987, acute onset, flulike symptoms. Seems like we have a late 80's cluster. I've thought we should do a poll here on PR for year of onset. Sad to say my health just gets worse...JAH
This peak in the late 80's to early 90's coincides with the use of a particular vaccine given to children in the 1960's. Can't remember which vaccine it was though. Anyone know?
 

Forbin

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This peak in the late 80's to early 90's coincides with the use of a particular vaccine given to children in the 1960's. Can't remember which vaccine it was though. Anyone know?
I don't know if this is the one that has been mentioned in connection with ME/"CFS," but, in, 1969, a mass vaccination program was undertaken in US schools using a new vaccine made from a live attenuated rubella virus (this was the first German Measles vaccine ever developed). The program was a preemptive attempt to thwart the expected, cyclic return of rubella by the winter of 1970. The main concern was that children would spread the disease to pregnant women. 20,000 birth defects had been attributed to the last US rubella outbreak in 1964.

I was 9 years old at the time and I don't think you could opt out of the vaccination program. I think this was also the first time that jet injector guns were used in a mass vaccination program in the U.S. They were certainly used at my grade school, where everyone was lined up to get the injection.

Subsequent concerns were raised that the jet injector guns could become contaminated with biological material flung back at them from the patient's own arm as a result of the injection process. This created the possibility of cross-contamination between recipients with other agents, like Hepatitis B. The W.H.O. no longer recommends the use of jet injectors for this reason.

Whether any of this is connected to ME/"CFS," I don't know - but something else would have to be at work since I believe the vast majority of school age children in the US were vaccinated for rubella between 1969 and 1970.

http://en.wikipedia.org/wiki/Rubella
http://en.wikipedia.org/wiki/Jet_injector
 
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JAH

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I don't know if this is the one that has been mentioned in connection with ME/"CFS," but, in, 1969, a mass vaccination program was undertaken in US schools using a new vaccine made from a live attenuated rubella virus (this was the first German Measles vaccine ever developed). The program was a preemptive attempt to thwart the expected, cyclic return of rubella by the winter of 1970. The main concern was that children would spread the disease to pregnant women. 20,000 birth defects had been attributed to the last US rubella outbreak in 1964.

I was 9 years old at the time and I don't think you could opt out of the vaccination program. I think this was also the first time that jet injector guns were used in a mass vaccination program in the U.S. They were certainly used at my grade school, where everyone was lined up to get the injection.

Subsequent concerns were raised that the jet injector guns could become contaminated with biological material flung back at them from the patient's own arm as a result of the injection process. This created the possibility of cross-contamination between recipients with other agents, like Hepatitis B. The W.H.O. no longer recommends the use of jet injectors for this reason.

Whether any of this is connected to ME/"CFS," I don't know - but something else would have to be at work since I believe the vast majority of school age children in the US were vaccinated for rubella between 1969 and 1970.

http://en.wikipedia.org/wiki/Rubella
http://en.wikipedia.org/wiki/Jet_injector
I received a polio vaccine (In a cube of sugar, if anyone remembers that, administered at school) in the sixties, tine test for tb, tetanus , I'm sure others. I personally don't see a link between vaccines and my experience of illness.
 

Little Bluestem

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This thread is breaking my heart, so much suffering :(

It is also absolutely terrifying. I have just gone one year since diagnosis and coming up to two years ill this summer. I have been avoiding clicking on this thread as I knew it would upset me, and now here I am in tears.
Keep in mind that it is the people who have not recovered that are here. Those who fell ill 25 years ago and recovered 22 years ago probably do not know this forum exists.

Many of us were not diagnosed for years and did all of the wrong things (and had all of the wrong things done to us). With your more timely diagnosis, you have a much better outlook.
 

taniaaust1

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This thread is breaking my heart, so much suffering :(

It is also absolutely terrifying. I have just gone one year since diagnosis and coming up to two years ill this summer. I have been avoiding clicking on this thread as I knew it would upset me, and now here I am in tears.

Well, here's to the future and to the hope we can find in the slowly gathering pace of biomedical research. One day a diagnosis of ME will simply mean a standard course of treatment and a great prognosis. For all of our sakes, I hope that day comes soon.
Its very very fortunate we all have internet now (just imagine what it would be like for most of us if we didnt). That I think has given us all a chance of maybe seeing a big change with things to do with this illness in our lifetimes as we now are able to advocate as a group and push for more research and of the right kind etc.
 

taniaaust1

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is there an age one can put on it where non cfs people are then functioning at your level or they think its something that just doesnt happen?
I know for me due to the severity of my brain memory issues and how I get confused a lot (this is when Im at my normal ME self and not crashing) .. that Im actually functioning to what I'd say would be an average level of late 70+-90+ years level.

I was functioning at a memory/brain level worst then my grandmother uptil only the last few years when Im sure she's developed Alzeimers..she'd have to be in her late 80s or early 90s. My elderly boyfriend who's in his late 70s or early 80s (sighs, I cant even remember his age thou Ive been with him now for about 4 years. I never can remember my own age either).. his brain and memory isnt as bad as mine thou is slowly noticably declining as he ages.

Every elderly person I know except my Alziemers I think grandmother has a brain functioning better then my brain does. Today at the hospital (I ended up there again) they were asking the elderly guy (who looked in his 80s) in the bed next door questions to test his brain functioning. Irronically I couldnt answer the questions they were asking him (I think they would of been shocked had they tested me in that same way!!). They asked him .. what day is it? What did you have for dinner last night? Do you remember her name? (after they introduced a nurse to him) I was laying thinking.. omg I cant answer any of those questions he's being asked.

If I was elderly. Im sure they'd have me locked up in a dementia ward or something, put into a home at the very least. Irronically cause we have ME/CFS this kind of issue is ignored in us if we dont meet that old age thing.

Probably older ME/CFS people who get this illness late, most wouldnt even end up with a ME/CFS diagnoses as they will just blame the issues on age (unless one has a severe issues like myself which couldnt be just blamed on age).
 

PNR2008

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I never got rubella vaccine because I caught it in1964, I was in grade 9. I did take the sugar cube for polio and later at age of 20 I got a cholera shot when traveling for American Airlines.
 

amaru7

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@taniaaust1 I can so much relate to these problems, you're not alone in this, read my dementia/severe brain problems thread. I also am not able to tell what I ate yesterday and often forget what today's day is amongst many other similar issues.

I don't get why this is neglected so much, because at the end of the day it's a neurological condition We are dealing with. The term brain fog is often used but it by no means does justice to my or your brain problems I think
 

CFS_for_19_years

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Regarding vaccinations in the early 1960's that I mentioned earlier, here is the first link I could find:
http://www.realfarmacy.com/cdc-admi...polio-vaccine-contaminated-with-cancer-virus/

"Soon after its discovery, SV40 was identified in the oral form of the polio vaccine produced between 1955 and 1961 produced by American Home Products (dba Lederle)."

SV40 means Simian Virus 40, a monkey virus. Read the article and weep. I am trying to find the article that discusses CFS.

Here's more:

http://www.witch.plus.com/monkey-viruses.html

Steps were taken in 1961 to eliminate the SV40 contamination from all freshly manufactured polio vaccines. These measures included ending the use of Indian Rhesus monkeys and instead using African green monkeys. The latter are free of SV40 contamination in the wild, but since they rapidly become infected in laboratory conditions, they need to be constantly monitored after capture. In addition, from 1962 the injected Salk vaccine was replaced by the orally administered Sabin type, which contains a living 'attenuated' polio virus. This vaccine cannot infect people with SV40 simply because it is taken by mouth: the human gut filters out all SV40 viruses, thus preventing them from infecting us. However, even after SV40-free vaccine became available, the US authorities did not simultaneously withdraw batches of contaminated polio vaccine that had already been released. Since it had a two-year shelf life, some contaminated vaccine was available as late as 1963.

Was SV40 the only monkey virus to contaminate the polio vaccine?
Several other monkey viruses have been found in polio vaccine, most notably simian immunodeficiency virus (SIV), which has only been screened out since 1987. This virus is endemic among African green monkeys, the species currently used in the manufacture of UK and US polio vaccine. A herpes-like monkey virus is also filtered out. Another possible contaminant is SCMV (simian cytomegalovirus), isolated in 1994 from human brain tissues taken from patients who had suffered from previously unexplained encephalitis and chronic fatigue syndrome. This virus is also likely to come from African green monkeys, the species used nowadays in the manufacture of polio vaccine. Very little research has been done on any of these viruses.
 
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CFS_for_19_years

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http://www.wellwithin1.com/polio.htm

The complication researchers had isolated in 1960 was a viral contaminate. It seems that when the live polio virus grown on monkey tissues was extracted for vaccine production another virus was extracted as well, SV-40. When this monkey virus was injected into research animals it produced brain cancer. It appears our government didn't wish to create a public panic or discredit the public health service, because instead of recalling the tainted vaccines, it quietly ordered the manufacturers to find a monkey free of SV-40 and continue production. As of 1963, the rhesus monkey had been replaced with the African green monkey for production of a safer polio vaccine, but between the years of 1955 and 1963 as many as 98 million Americans had received doses of live polio virus vaccines tainted with SV-40..
 

Sushi

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@CFS_for_19_years

"Soon after its discovery, SV40 was identified in the oral form of the polio vaccine produced between 1955 and 1961 produced by American Home Products (dba Lederle)."
Do you know anything about the polio vaccine before 1955?

Sushi
 
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My ME started 12.09.1992 - which makes it just over 21 years. The trigger was an operation - thyroid.

Dane
 

Sing

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19 years for me from the onset of memory and cognitive troubles at age 46, which is when I consider this started. However, it was 21 years before that when an unusual degree of muscle aching had started--age 25, then 3 years after that when sleep troubles began. I was also subject to poisonous chemicals at home and fell off a number of relatively high places. I was thinking about the falls lately because of years of neck pain.

I have had loads of infectious illnesses and giardia 3 times. The worst infectious illness ever happened in India. The germs over there my body had never seen and had no idea what to do with. I don't want to single India out, because this could happen in any environment which is very foreign to your system. Every time I have been very sick, by the way, I have been surrounded by other people, not one of whom got sick. This year finally got my immune system looked into. It is way the heck down.

So, for me the overall illness has come in stages. Bad hypotension for the past 5 years, I almost forgot to say. No remissions. Any improvements I have had are due only to better management and medications, not to any improvement in my underlying condition, which is declining through a combination of aging and the effects of this illness.
 

Sushi

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I believe the first polio inoculations were given to school children in Virginia in 1954

http://www.suntimes.com/news/267022...-shots-felt-round-the-world.html#.U2MC_P3IpFQ
Earlier, it seems: http://en.wikipedia.org/wiki/Polio_vaccine

The first effective polio vaccine was developed in 1952 by Jonas Salk at the University of Pittsburgh, but it would require years of testing. To encourage patience, Salk went on CBS radio to report a successful test on a small group of adults and children on March 26, 1953; two days later the results were published in JAMA.[11]
 

juniemarie

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Man I was terrified of that Iron Lung when I was a kid….used to give me nightmares. My mother would not allow me to go to the public pool before the vaccine came about….she said kids got polio at the pool.
There was a town that banned all children under 16 from entering! All because of the fear of Polio…tremendous fear. I remember it
 

Sushi

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Man I was terrified of that Iron Lung when I was a kid….used to give me nightmares. My mother would not allow me to go to the public pool before the vaccine came about….she said kids got polio at the pool.
There was a town that banned all children under 16 from entering! All because of the fear of Polio…tremendous fear. I remember it
Same here--everyone was terrified. I wasn't allowed to swim in the lake.

Sushi