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

Discussion in 'General ME/CFS Discussion' started by Misfit Toy, Apr 22, 2014.

  1. alex3619

    alex3619 Senior Member

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    Oral and injected polio vaccine have been implicated several times. Nothing is certain though. These vaccines may have been contaminated with simian viruses due to the manufacturing process.

    Experimental vaccines are MUCH older. They were tested in hospitals. Epidemics tended to occur in hospitals. There is no way to be sure there is not a link at this time.

    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.
    Last edited: May 2, 2014
    NK17 likes this.
  2. CFS_for_19_years

    CFS_for_19_years Senior Member

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    Now that I've had a chance to refresh my memory and clear out the cobwebs, my original statement should have read "there may be a cluster of individuals vaccinated for polio in the late 1950's and early 1960's who later developed CFS/ME/FM."
  3. justy

    justy Senior Member

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    For me I am getting there...been ill most of my adult life - since 25/6 and i'm nearly 45 now, although I may have had gradual problems from in my teens.

    I have been very lucky to have had a remission to NEAR normal functioning - not cured by any means, but went from moderate/severe to very mildly affected, for about 8 years and in the past 6 years have gone back down to severe then moderate after catching Measles from my kids.

    They weren't vaccinated - I was though and still got measles, followed by pneumonia that took months and months to heal, then straight into a minor op and I collapsed and have not since then gone back to that very mild level of functioning, apart from approx. two weeks last summer and one weeks the summer before.

    What is it about the summer? I always crash badly in September.
  4. Misfit Toy

    Misfit Toy Senior Member

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    In 1988, in college, I and another girl had EBV. She had to leave school and I stayed on. Came home that summer, was exhausted after several months of illness and had my wisdom teeth out and that was it. That was the straw. 18 years old. I remember the air conditioner bothering me. The sound of it. I had adrenaline pouring out of me and thyroid was a mess after EBV. It was like a bomb hit me. Sophomore year of college...was home and then tried to return. Could only take 3 classes and then had GERD And was hospitalized for GERD for a month.

    The symptoms were all over the place amd driving me crazy. Muscle spasms, anxiety, GERD, menstrual problems. Developed an all over body rash for a year in 1992, then endo and PCOS in 1993 and then back problems. Went on a serious diet for elimination of sugar and took a ton of vitamins and got "better" as in...able to go back to college part time and work and not having endo so bad.

    1999, went off of vitamins, developed horrible endo, IC was diagnosed and then candida. Was 29, had to quit college. Was in college for 10 years trying to complete my 4 year degree. Never finished. One year left.

    I always felt hormones were huge for me. EBV was huge for me. Titers are still high.

    2002, Fibro came on. 2008, early perimenopause and absolute hell with food allergies. Back up....2002...MCS came on. So....it gets worse as years pass.

    Now, adrenals shot, liver a mess. All kinds of stuff. Immune system went under with hormones...I AM CONVINCED. Colds and flus and bacteria and viruses in full force. Immuno wants me to treat viruses full time due to lymphopenia. On Valcyte.

    Was just diagnosed with Idiopathic CD4 Lymphopenia and CVID and Sjogrens!

    SERIOUSLY??????

    And, I am still here, but wish I was dead sometimes...yes, I said it. The CVID and Lympopenia has me a bit scared. My lympocytes are so low it's like I have AIDS. I am supposed to contact the NIH.

    I am being told this is not all CFS, but guess what....to me it still is because I have PEM and all that CFS folks have and I have had it for years and I am still a CFS person. After 25 years to tell me...this isn't CFS..it's bullocks to me because it's all I know and I have the neurological stuff. So, I have CFS and CVID and all that I mentioned.

    NEVER....ENDING...IMMUNE...DISORDER.

    Gets worse.
    wastwater and heapsreal like this.
  5. wastwater

    wastwater Senior Member

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    SCMV is the one I find interesting here for myself.Check out my post Cytomegalovirus :)
    Last edited: May 7, 2014
  6. wastwater

    wastwater Senior Member

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    Misfit,by the sounds of it they found out what is wrong its a primary immunodeficiency CVID isn't there a treatment for that,I would follow that route,Im ordering a book on primary immunodeficiencies and hoping this is my answer too.
    golden likes this.
  7. Misfit Toy

    Misfit Toy Senior Member

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    @wastwater ...yup and good point! unfortunately, I have been unable to tolerate the treatment for CVID. It is what I have, for sure. I just for whatever reason have had a terrible time with igG therapy, which is a real bummer. It exacerbates my illness to the fullest and makes my liver enzymes higher, my BP goes through the roof and my heart rate is 130 BPM for weeks after IVIG. However, I may go to SubQ in the fall and hope that that makes a difference and not such a huge one. Many do great with igG and some do not. I have a friend who is a volunteer for the PDF and she after 7 years of igG is filing for SSD because even with igG, she is still so sick, suffering currently with a chronic yeast infection or growth in the lungs and just never ending infections. Sad. That can still happen with igG therapy...people still get sick, they just might not be in the hospital as much or at all. There is no cure for PID, just treatment and some remain sick, or some completely flourish. It all depends.
  8. Chickadee9

    Chickadee9

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    Nearly 30 but I've been lucky. Much improved over the years though with major relapses. Don't know how or why but just grateful.
  9. nokmax76

    nokmax76

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    Hi all. First-time poster but long time lurker here. For me it's 28 years and counting. Never had a remission but I'm thankful it has at least been a gradual decline. Seems to be putting on a spurt of hurt now I've hit middle-age though. I will post much more later but can I first make a suggestion?

    Can we stop calling it brain fog please? Such a mild term is simply inadequate to describing the daily horrors of the "premature dementia" many sufferrers go through. For one thing, we all know fog is a temporary weather system. What I and I suspect many others go through, is much more long-lasting. If we have to compare to climate, why not call it a drought? Thought-drought. That's more like it.

    We stumble around in an arid desert of cognition without any sign of intellectual relief. Brain fog is a bad day at work where you press send on an email you meant to delete. Thought-drought is like typing the word water into Google and no results coming up. Just a suggestion. I'm sure you guys can come up with something more punchy.
    Little Bluestem, Sidereal and Sushi like this.
  10. Daffodil

    Daffodil Senior Member

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    almost 21 yrs here
  11. belize44

    belize44 Senior Member

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    20 years, for me. But even then, I am not sure that it hadn't started earlier, with a long and stealthy approach. When I was 18, I came down with Epstein Barre. After that, I would periodically crash, with vague symptoms that doctors didn't believe in. Then In 1985, I was diagnosed with poly-something I can't remember the word. But I think it was the precursor to fibromyalgia. I was still able to work but would periodically crash, for about twenty four hours, then go back to normal. In 1995, I was graduating college and since I was going into health care, I had to get a mandatory Hepatitis shot.

    It was downhill from there! Here I was, just starting out in a brand new career only to have to go on disability just five years later. Even then, I had hoped that I was just run down and that I would be back at work in a few years. But of course that hasn't happened. Reading back through all the responses, I found myself in tears. we have lost so much I am still grieving for the person I used to be, who thought nothing of going for a walk, or even running to the corner of the next block. Now I have to question if I can walk the distance to our rural mailbox.
    Little Bluestem and heapsreal like this.
  12. Sea

    Sea Senior Member

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    Somehow I missed this thread until now. I don't remember it, maybe I ignored it before, it is a very confronting thread.
    I've been sick for 28 years since EBV sudden onset in 1986. I had 4 years of remission 1996 - 1999, probably 90% functional. A slow deterioration after a series of inconsequential viral illnesses in 1999. The remission gives me hope that the damage is not necessarily permanent if treatment can be found.
  13. soxfan

    soxfan Senior Member

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    10 years in October for me. It started with cramping/nerve pain in my calf. Then a few days later a terrible 24 hour flu. A few weeks after that the fatigue hit and have never been the same....

    Treated for Lyme several times and had complete remission from Nov 2007 to August 2008 then went backwards.
  14. Ninan

    Ninan Senior Member

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    Ten years and two months. Found several things that help for some time but nothing seems to help permanently.
    Last edited: Jun 16, 2014
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  15. Ninan

    Ninan Senior Member

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    My doctor says that's the difference between MS and ME: If you get rid of MS you still have the brain damages. What's done won't go away. If you get rid of ME, on the other hand, you get well. To me it sounds like proof that ME is stopping some kind of process somewhere, but not damaging anything vital.

    And: It's hope. We might actually be okay one day.
    rosie26 likes this.
  16. persuasion

    persuasion visitingmrssmith.com

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    27 years. 1987 (age 22). A few people seem to have gone down that year in the UK. First year up and down with a PVFS diagnosis (they didn't call it ME/CFS then). Then major crash: housebound.

    Then severe bedridden state (didn't leave bed for 3 years) followed by mostly in bed, followed by present situation mostly housebound/18hrs-ish resting in bed.

    Can push it if I absolutely have to, but severe consequences.

    I'm sorry but I believe that people with 'remissions' have something else. Classic ME, in my experience, tends to be pretty severe and life-long.

    The only amelioration I ever had was when I fell pregnant - I found the oestrogen seemed to help and I felt a little better.

    Peri-menopause NOT good but was hoping once the hormone fluctuations are over, things might improve.

    Have had cancer, TIA, major stomach, urinary, breathing symptoms and a lot more pain as years have gone on but these latter stick around for a year or two and then seem to disappear.

    It is perfectly possible to live your entire life with ME - please don't despair those of you starting out - because there can be somewhat better spells/days and you learn to cut your cloth....difficult though it is.
    Last edited: Jun 16, 2014
  17. Sea

    Sea Senior Member

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    You are of course entitled to your opinion, even though your experience does not reflect the research or other peoples experience.

    Until we know why people get sick, why some recover and some get worse, why some have remissions only to get sick again... telling other people they don't have ME is just ignorant
  18. ukxmrv

    ukxmrv Senior Member

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    Dr Ramsay was clear that some of his ME patients did have remissions. I don't know where your ideas about "classic" ME come from.

    Have a read about it here

    http://web.onetel.com/~kickback/THE CLINICAL IDENTITY OF ME.html

    "The chronic case cf M.E. can take two different forms. In the first there is a recurring cycle of remission and relapse. In three doctors who contracted the infection between 1955 and 1958 the endless alternation of remission and relapse, still continues. In my experience a remission can last as long as 3 years. Marinacci and Von Hagen record one of seven years. The second form of chronic M.E. is more tragic in that no remission occurs. The patient lives a very restricted existence, unable to walk more than a short distance and that with considerable difficulty, unable to read for any length of time and in many cases subject to disturbance of sleep rhythm and/or vivid dreams and always the almost invariable frequency of micturition, hyperacusis and dizzy spells. A few of these chronic cases are compelled to sleep upright as a result of permanent weakness of the intercostal and abdominal recti musculature."
    Sidereal likes this.
  19. persuasion

    persuasion visitingmrssmith.com

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    Unfortunately, I have reluctantly become an expert in severe ME. Perhaps Ramsay is correct about remission, perhaps he is not - his findings are not exactly up to date.

    Many severely ill people with the disease - and perhaps our voices are not heard enough - do feel that those with remission, and those that 'get better' (excluding adolescents or those in their first year of illness where it is recorded many times that there is a chance for recovery) have something different.

    Even in the many reviews and definitions of the illness taken more recently a tiny - statistically irrelevant - proportion of sufferers remitted. And again, there is no way of telling what these people suffered from.

    Like or loathe the opinion, a lot of people who have spent their entire life locked up indoors or worse, in bed, would agree with it.

    Perhaps they are discouraged from airing it in case they are labelled 'ignorant.'
  20. lansbergen

    lansbergen Senior Member

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    So have I but I will not claim remission is impossible.

    I am not in remission yet but have improved a lot. It took many years to get slowy where I am now

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