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

dannybex

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It just seems that since we do not know definitively what switches the illness on, we also do not know definitively what switches it off or into remission. Until we do, I think anything is within the realm of possibility even though unlikely. I am trying to stay hopeful yet realistic.
The unfortunate thing I think is that there are probably quite a few factors involved, and even worse, they're probably different in each one of us.
 

jann1033

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About the metabolic syndrome: i wonder this mainly as when my CFS was somewhat controlled via pacing my A1C went to 5-6, cholesterol and bp good. When its not at all controlled my A1C shot up to 7.6-10, cholesterol 200, bp something too high /90(?)or way lower than normal. Just seems an odd "coincidence" since i saw my records from a few years ago, CFS, Very active and same elevated other stuff.
 

Stretched

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Mine started in 1986 while I was jogging - became flu-like.

Got a 'flu bug' that I could actually feel - started cycling ~ once a month. I had to give up exercise almost immediately and slowed down to a crawl over the next 4 years.

I was stressed out from work but continued on until ~1990, then half days on the sofa for ~a year. Then had to stop, close my company and retire early.

I didn't make the 'Tahoe' connection at the time but in late 1985. on vacation, we had flown into Reno and stayed there a couple of days, then drove around Lake Tahoe. We ended up staying a week there then drove to San Francisco (stayed a week there).

No problems until several months later I got the flu that never went away (above). I went to multiple docs and specialists - no markers. So I hit the Internet and soon
connected the dots. ('Had to pay for research online - and a a very slow rate!)

BTW, anyone here part of that early CFS group on AOL?

Crashes got progressively worse. With lots of restI
almost got well. However, in 2005, I had a 4- year legal ordeal with major stressors
that likely caused a sustained lower level of functioning.

In hindsight I think bed rest early on would have enabled me to beat it; and leaving out the legal battle would have left me at a higher level of functioning (versus a now
90% home bound state). Optimistic? Not really but I sure have learned a lot of
arcane stuff! Hanging on as a reluctant seeker... .
 
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Yup, I was in the teens, heapsreal. Not a good time and derails your whole life. It derails it no matter what age, but having a failure to launch is the worst. Even at 44, I still feel like I lost my identity....
.... I became that in my 30's after not knowing what the hell I would do for my life financially if anything so I felt a severe loss of self esteem about just who I was other than some sick girl, because I was a girl who got this. And, at 44, I still feel like a girl. I still have this insane desire to do all of the things I missed out on. Or, I am depressed that when I was a teen, I was never to go out and "PARTY" and let loose like other young folks. No kids, no marriage...nothing. I feel lost.

.
I can strongly relate. Got ill at 15, now 38.
I particularly miss not having an handsome young husband in youth or a husband now b/c so much of life is/was spent surviving.

We have high levels of metabolic syndrome, and nearly double the risk of lymphoma. For many of us that metabolic syndrome will progress to type 2 diabetes. Even if ME itself could not kill, this would increase our death rate in long term sufferers, though not hugely.
Regarding Lymphoma, I heard something about higher lymphoma from this paper, but did not know it was double the risk. Where did you read that?
http://www.ncbi.nlm.nih.gov/pubmed/22648858
 

alex3619

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@redrachel76, there was a cancer surveillance study (not a CFS or ME study) in the US a few years back. We had more lymphoma. I do not currently have a link. Now I am thinking about it I am wondering if it was more like 20% increased risk. I no longer recall accurately. However there have been other findings though less formal.

We need a really good surveillance study. One of the issues with population surveillance using reporting codes is that the increased risk group with CFS will include many misdiagnoses. So the risk is likely to be larger than any study using reporting codes for CFS. We need a good prospective cohort to evaluate this.

The study you cite may have been the one I was thinking of, though I am not sure. In which case the risk, without adjustment for misdiagnoses, is about an extra 30% (29%). Allowing for misdiagnoses this might go to double, depending on what the misdiagnosis rate was.

Earlier findings in patient cohorts of specialist doctors found rates up to 5% if I recall correctly. However these doctors might see the more sick patients, or be anomalies. Which raises the question: is prevalence linked to severity?\

However the cited study is in elderly people, so this might distort the results.

There is no substitute for a proper prospective ME cohort study.
 

RosieBee

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Sudden onset 24 years ago in December 1990. A really nasty flu raged in 1990 - it left me so ill and weak I couldn't lift the phone next to my bed. My Dad had a stroke, the flu was that virulent.

When I collapsed I had recently had a minor operation (lumpectomy) and a series of vaccinations (to bring me uptodate according to my new doctor). I wonder if that left me unable to fight the influenza? I was raising two children on my own and doing my PhD, very active, eating very healthily, regular exercise and sports. Then whammo! Too weak to walk or even speak. When I struggled back to uni I found I had lost cognitive ability - memory, concentration etc. and had to hide this from my professor. I managed to get the PhD based mainly on the 15 months work I did before I got sick. Ended up bedbound and being cared for by my children for the next 10 years.

I worked hard to make a recovery and managed to do that twice. But lost it all again the first time following typhoid (even though I was immunised) from a stupid mistake made whilst living/ traveling in India & Nepal. The second recovery was trashed when I was compelled to have Hep B vaccination as part of my NHS dietetics training - still not recovered from that one 8 years ago.
 

Mij

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@RosieBee your story sound similar to mine. I had a sudden viral onset Feb 1991 and was vaccinated x4 (Hep B, tetanus and rubella) one month later when I was still symptomatic. The vaccines were required for courses I was talking and for work.

I still feel I may have survived the initial viral onset and not developed ME if I was not vaccinated.
 
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Sudden onset 24 years ago in December 1990. A really nasty flu raged in 1990 - it left me so ill and weak I couldn't lift the phone next to my bed. My Dad had a stroke, the flu was that virulent.

When I collapsed I had recently had a minor operation (lumpectomy) and a series of vaccinations (to bring me uptodate according to my new doctor). I wonder if that left me unable to fight the influenza? I was raising two children on my own and doing my PhD, very active, eating very healthily, regular exercise and sports. Then whammo! Too weak to walk or even speak. When I struggled back to uni I found I had lost cognitive ability - memory, concentration etc. and had to hide this from my professor. I managed to get the PhD based mainly on the 15 months work I did before I got sick. Ended up bedbound and being cared for by my children for the next 10 years.

I worked hard to make a recovery and managed to do that twice. But lost it all again the first time following typhoid (even though I was immunised) from a stupid mistake made whilst living/ traveling in India & Nepal. The second recovery was trashed when I was compelled to have Hep B vaccination as part of my NHS dietetics training - still not recovered from that one 8 years ago.
Sorry to read your story as I am to read the stories of all those afflicted with this cruel nonsense.

Is the Hep B vaccination a common cause of CFS crashes? I ask because my health declined after having one in preparation for travel abroad about twelve years ago. I know it was the vaccination that caused it but could find absolutely no literature on it then or for years afterwards. If I could go back and undo one thing in my life it would be not to take that vaccination. Did not affect my brain fog, but made me phyisically about 20% worse overnight.

Edit: Just read Mij's post. Seems it is a common cause. Is it the mecury they use in the vaccine as a preservative...?
 

CantThink

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January 11th 1991, age 10 - I went to school feeling crappy, and came home with what seemed like gastroenteritis mixed with glandular fever/mono. I went from standing in the morning to bed-bound in the evening. I never recovered.

In hindsight my mum says I was ailing for approximately 2 years before I got actually obviously sick. I remember in the 3 months before I got acutely sick, I was doing an extra tuition class (for an entrance exam) at primary school and I had extremely bad cognitive dysfunction. For example, I suddenly couldn't do maths tasks that I had previously been able to do, such as fractions and long division. Being a 10 year old, I didn't understand what was wrong and I didn't mention it to my mum as I thought I was just thicker than the other students;). I also felt unusually tired during those after-school sessions. which was unusual as I was typically very bouncy and full of energy. I remember feeling quite confused. Prior to this I had developed a weird swelling of my hands, and I also had started to sweat and need a deodorant age 8, which was not normal for children in my family.

Anyway, after being bed bound and then later on housebound during the initial acute period of January through August, in the September I started at secondary school. I somehow completed my GCSEs, and did 3 A levels (awful results). I went to school about half the time for every year except one, when I was off the entire year dealing with an ovarian cyst and laparotomy. My attendance would usually be something like: go in for one week, be off for two... or in for 2 days, off for 2 days etc.

I went to university, and managed to do that because I was very supported - had catered halls of residence for 4 years and other stuff to help me.... By the time I finished, I was bed bound again (I don't regret it as it was one of the few good/normal things that I have done since getting sick, but I am sure that completing my education reduced my chances of recovery).

After spending some time recovering from university, I was pretty much forced into a part time job by the local job centre. I worked for 6 months. It was a nightmare. I was so ill and I hated the job because it was a very stressful front line position dealing with vulnerable people and irate members of the public (one of the worst jobs I could have been given really). By the time I finished that, I crashed and was bed bound again. I was then signed off for a couple of years.

I spent from 2006-2008 trying to be normal, and ended up with a whole host of other health problems outside of M.E. Since 2006 when I tried to work again, I have been progressively worsening with a brief respite of around 8 months when I took LDN and the progression stopped. I continued taking it, hoping it would leap into action but LDN stopped working for me, and I eventually came off it in the autumn (I'm hoping to retry it in the spring, and perhaps trick my body into thinking I've never taken it).

On a side note - I find it extremely difficult to read about how young people/children that get M.E. have a high/good chance of recovery, and the same for M.E. sufferers who contract it after/from glandular fever/mono. I feel as if I drew the short straw! I mean... I had 2 key aspects to this illness that mean I should have recovered, and here I am... blah!:aghhh:
 

Mij

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Sorry to read your story as I am to read the stories of all those afflicted with this cruel nonsense.

Is the Hep B vaccination a common cause of CFS crashes? I ask because my health declined after having one in preparation for travel abroad about twelve years ago. I know it was the vaccination that caused it but could find absolutely no literature on it then or for years afterwards. If I could go back and undo one thing in my life it would be not to take that vaccination. Did not affect my brain fog, but made me phyisically about 20% worse overnight.

Edit: Just read Mij's post. Seems it is a common cause. Is it the mecury they use in the vaccine as a preservative...?
https://www.masscfids.org/resource-...s/444-dr-byron-hyde-2012-fall-lecture-summary

Immunizations and CFIDS/ME and FM
Dr. Hyde emphatically stated that “immunizations save lives, and are better than all the doctors in the world put together”, but cautioned that doesn’t mean they are problem-free. His concern centered on two: recombinant hepatitis B immunization and the rubella immunization. Dr. Hyde also spoke to the issue of contaminated immunizations around the world and how they can possibly trigger CFIDS/ME/FM illnesses.

He has personally seen some very ill, bed-ridden patients as a result of the recombinant hepatitis B immunizations, causing disautonomia― the dis-connect between the brain and the ability to maintain normal pressure in peripheral arteries.

Dr. Hyde explained how the rubella immunization can cause rheumatoid arthritis. If a pregnant woman has not had the vaccine, she cannot receive it while pregnant because it will cause harm to her unborn child. When Dr. Hyde started in practice, the current wisdom of the day then was to give the immunization immediately after childbirth to both the mother and child. If the mother was breast-feeding, a sensitivity to, not immunization from rubella would develop in the child. If the child was a boy, nothing happened to the child. If the child was a girl, and she received a booster for that vaccine in grade 8 (in Canada), she could go on to develop an internal auto-immune reaction which then could develop into rheumatoid arthritis. Dr. Hyde pointed out that this is 12-14 years after the initial insult to the body.

Contaminated Immunizations. Dr. Hyde discussed some of the issues around immunizations that have been contaminated and still go to market. For example, during 2004-2005 some batches of the flu vaccine manufactured by Chiron Labs in England became tainted with Serratia Marcescens. The US and Canada bought vaccines made in England because they were cheaper. Even though the company informed the buyers about this contamination, the US and Canada continued to use the immunizations for 6 more months. Dr. Hyde feels many people probably got ill with CFIDS/ME after this.

Immunization and travel start date. Dr. Hyde emphatically told the audience that when preparing for travel abroad, particularly following and during trips to third world countries, “NEVER get an immunization and then travel immediately. Always allow 30 days between the injection and the travel plans to allow the immunization to take effect.” He explained that if, by chance, you got on a plane the week following the immunization, and sat next to someone with a minor virus, your immune system may not be able to fight it off and you could end up becoming chronically ill with CFIDS/ME. A virus plus an immunization do not mix well. He reiterated that acute ME is usually not detectable by routine examination and only a SPECT, BEAM or PET scan can pick up the encephalopathy.
 

RosieBee

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@RosieBee your story sound similar to mine. I had a sudden viral onset Feb 1991 and was vaccinated x4 (Hep B, tetanus and rubella) one month later when I was still symptomatic. The vaccines were required for courses I was talking and for work.
I still feel I may have survived the initial viral onset and not developed ME if I was not vaccinated.
Is the Hep B vaccination a common cause of CFS crashes? I ask because my health declined after having one in preparation for travel abroad about twelve years ago.
Edit: Just read Mij's post. Seems it is a common cause. Is it the mecury they use in the vaccine as a preservative...?
@Mij Very similar story to me and within a few weeks of my first collapse! I have talked with many others, and there are those who have posted here that also fall within the late 80s early 90s period for their first collapse. The combination of vaccinations or a mediacl operation with acute onset of ME is a very common pattern.

@nokmax70 The topic of Hep B vaccinations (and other vaccinations) and onset of ME is one I see coming up time and time again. Particularly in people working in public health who were compelled to have the vaccination or lose their job - as I was. On my degree course there were about 20% of us that became ill after the Hep B vaccination 8 years ago and some of us have never been able to work again since.

Something is definitely wrong with the immune system in relation to vaccinations - myself and my daughter, who also has ME, still get illnesses even though we have been vaccinated against them.



http://therefusers.com/refusers-new...ronic-fatigue-syndrome-us-court/#.VNZQPsbbxz0

Freedom of information request about reported vaccine related ME/CFS (pretty incomplete I should imagine. I know no record was made of the incidence around my vaccination in 2007 triggering ME relapse)
https://www.whatdotheyknow.com/request/157150/response/388475/attach/html/3/FOI 13 150.pdf.html
https://www.whatdotheyknow.com/request/157150/response/388475/attach/4/FOI 13 150 Tables 1and 2.pdf

http://thinktwice.com/hepb.htm
http://www.investinme.org/InfoCentre-vaccines-popup-1.htm
http://www.express.co.uk/news/uk/150804/Fury-at-vaccine-scandal
http://www.whale.to/vaccines/hepatitis17.html
http://www.whale.to/vaccines/cfids.html
 
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37 years for me......

It all started after a head injury at the age of 12.....

It started off with a severe disturbance in the sleep center of my brain..

I would sleep for 20 + hours per day..

I was very ignorant as a child so I never thought nothing of this
as my teachers never had concern for me sleeping in every class.

Then when I started working I would fall asleep(micro naps)
standing up!
Work exhausted me soo much that I would come home eat dinner.
then put my work close on and go to sleep until the next morning
and still be late 99% of the time..

Then I would just crash missing work at least 3 days
per month sometimes up to 3-4 days in a row..

I never could explain it so I would just say I was sick..

Because anyone I tried to tell about it would look at me as a nut
or just plain old lazy.
 
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Forbin

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Don't take this as accurate, my memory is fubar, but I think an early experimental vaccine was being tested at the site of the 1934 Los Angeles epidemic. Those who got sick, and they did, were awarded massive compensation. Last time I went looking for the online evidence of this, to confirm it, I could not find it. Previously it was available. This was circa 1931.
I seem to remember someone speaking of research that involved mice in LA in early 1930's, (possibly in relation to an old discussion about XMRV).

But there was polio research involving monkeys going on in LA in 1934. This was at the exact same time that both a polio outbreak and a presumed ME outbreak occurred at LA County Hospital.

In Los Angeles, in June 1934, the City Health Officer announced the purchase of 200 rhesus macaques monkeys for "experiments looking for the ultimate control of poliomyelitis." The announcement came on the heels of L.A.'s the first polio cases that year.

The Rockefeller Foundation had donated the money for the purchase of the macaques. The Foundation was also supporting research in New York City that was aimed at creating a vaccine from the spinal cords of infected monkeys.

The Los Angeles research may have been along the same lines, but I haven't been able to find any details on it.

The New York research, though initially thought to be benign, later came to be suspected of inducing polio in several children. It's said the research was too flawed to be certain whether it was actually responsible.

At the same time (1935), a more dramatic vaccine failure out of Philadelphia did, in fact, induce cases of polio and caused the deaths of several children. Some 10,000 people got that vaccine.

---

ETA: Just saw that the LA County Health Commissioner in 1934 declared that the polio outbreak was of a "milder" form than usual because they were giving a serum to the stricken that was made from the blood of persons who had previously recovered from polio. This was likely an attempt to transfer antibodies from the recovered to the ill. Whether or not it actually had anything to do with making the cases "milder" is open to question. [However, I do think an antibody serum was credited in the recovery of some of the recent Ebola cases that were treated in the US.]

All of this was happening at LA County Hospital where all of the polio cases in the county were being sent. It certainly seems possible that a serum of this type might also have been tested on doctors and nurses on staff to see if it would make them more resistant to polio during the epidemic..
 
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Annesse

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Something is definitely wrong with the immune system in relation to vaccinations - myself and my daughter, who also has ME, still get illnesses even though we have been vaccinated against them.
I think one of the things behind this would be elevated levels of the cytokine interleukin-6. Here is one study that found elevated levels of interleukin-6 in ME/CFS. http://www.journalofpsychiatricresearch.com/article/S0022-3956(96)00063-5/abstract
The presence of IL-6 can lead to reduced cytotoxic function of the cells that attack virus infected cells (CD8+T cells). Research has demonstrated that CD8+T cells that are activated in the presence of IL-6, develop into cell types (Tc17 cells) that display greatly suppressed cytotoxic function.
 
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