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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. Sea

    Sea Senior Member

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    I am sorry you are so severely ill. That does not make you an expert on the illness. Even if everyone with severe ME truly believe they have something different that does not make it so. We are all ignorant until the research and biomarkers sort us out.

    There is a range of severity in MS. Some have relapsing/remitting illness, some recover completely, some live with chronic illness and some get progressively worse and die. Doesn't make it a different illness.
     
    GracieJ, Sidereal and heapsreal like this.
  2. ukxmrv

    ukxmrv Senior Member

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    So when you say "classic ME" or "severe ME" exactly what are you describing if not Ramsay's original ME?

    (Ramsay, who is sadly dead and not "up to date" with the disease he wrote a book about)
     
  3. persuasion

    persuasion visitingmrssmith.com

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    This is your opinion, not fact, and you are entitled to it. I disagree with it and that is my opinion. I'm an expert on my illness not yours. MS is not a comparable disease and they have a diagnostic test. Let's hope a diagnostic test comes along for us. I'm sure it will separate disparate groups within the CFS/ME community.
     
  4. persuasion

    persuasion visitingmrssmith.com

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    I think the picture of the 'ME' patient has changed somewhat since he died.
     
  5. Tristen

    Tristen Senior Member

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    I've never had a full remission in 20 years with ME. It has actually been a constant progressive disease. I've been at all levels between mild and severe, but nary a day off from all symptoms. Just grateful as hell to be where I'm at now away from that abyss of severe ME. And, I've hopefully learned from all the shared experiences that even if I did get a remission, the beast will only be sleeping, not dead.
     
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  6. lansbergen

    lansbergen Senior Member

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    Did it? In what way?
     
  7. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I thought it was only later stages of MS that had a definite diagnostic test. Showing the nerve damage they suffer isn't seen in early stages??
    I could be wrong?
     
  8. zzz

    zzz Senior Member

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    I first came down with ME 24 years ago. I knew what it was the day I got it; it was like nothing I had ever had before, and wasted me physically and mentally. I thought, "This must be the chronic fatigue syndrome I read about!" All the symptoms of classic ME. Two months into this, I accidentally stumbled upon one of Jay Goldstein's magical treatments, and went from being almost fully bed bound to back at work full time after three days. Within a few weeks, I was 100% healthy.

    Yes, this was really ME folks, complete with PENE, inability to understand a single sentence I read (though I could understand the individual words), severe memory loss, TMJ syndrome, etc. etc.

    I thought I was cured after those two months. But four months later I came down with shingles at age 38. (Generally, shingles are rare in people under 50 - except in those who are immunocompromised.) This was followed by a mild couple of weeks of ME symptoms. My doctor thought that the shingles episode was strange enough that I should be tested for HIV. I was, and the test came back indeterminate. The ELISA was positive, and two of the five viral bands on the Western blot (including the p24, or core virus band) were positive. They told me to wait six weeks and get tested again. That was not a fun six weeks. But the retest was completely negative.

    Over the next few years, I would alternate between negative and indeterminate HIV results (which the doctors told me meant it wasn't HIV), until eventually my tests always came back negative.

    Although at the time, my doctors said they didn't know what caused the indeterminate results, when I checked recently, I found that only two things can cause them. Either I was infected with a virus with a similar structure to HIV (such as HTLV), or else I had an autoimmune disease.

    Thirteen months after the onset of my first episode of ME, I came down with a second episode, though it wasn't as severe. It also came and went in two months, although it was more gradual on both ends. Jay Goldstein's magical cure no longer worked (and hasn't since).

    The next year, I had foot surgery, which triggered another relapse. This time it was for three months, but it was the mildest yet. After that, my health basically stabilized, and I went about five years with no symptoms at all. I considered myself really lucky, and thought I had dodged a bullet there. I knew that ME could be completely disabling and last forever, and I thought I was cured.

    But I always carried with me a relic of my shingles episode - a little lesion on my back. In August, 1998, it began to itch, and then it began to itch more and more. I saw my doctor, who told me it had turned malignant, and was now a basal cell carcinoma. Nothing to worry about, but I should definitely have it removed. So a week later I did, in a very simple procedure under local anesthetic.

    Bad move.

    Exactly one day later, at 3:10 p.m. on Thursday, September 17th, 1998, I was working at my job at my computer when I felt a wave of weakness wash over me. I immediately knew what it was, even though I hadn't felt it for years; it's quite unique. One moment, I was feeling completely healthy; two seconds later, I was feeling quite ill and weak all over my body, and a headache was starting to form.

    Now that's what I call sudden onset.

    At the time, I thought, "Oh no! Now I'm going to miss another couple of months of work!"

    Hah.

    I slowly went downhill for the next couple of months, until I was almost housebound. And I had no more remissions. So it's been 16 years now of being fully disabled, although I've found various things that help.

    Meanwhile, I always wondered if the removal of that old herpes zoster lesion triggered my final relapse. From what I've read here recently, it's rather clear that it did. During the removal of the lesion, I felt a little tingling in my spine. That was the zoster being reactivated. And herpes zoster is a known cause of encephalitis, as well as being a known trigger for ME. It's definitely not the cause, but it's a cause.

    Now if I didn't have that lesion removed, I might never have relapsed, and then I would continue thinking I was "cured". From what I've seen, a cured case of ME is just one that hasn't relapsed yet. This isn't saying that relapses will definitely happen - just that the potential is always there, in the same way that the potential to develop shingles is always there once you've had chickenpox. And there does seem to be a predisposition to relapses; this is essentially what Ramsay was saying. Also, as immune dysfunction is so central to this illness, the fact that the immune system tends to weaken as people age is another force pushing us to relapse.

    But I don't want to sound negative here. At some point, possibly soon, we'll know enough about supporting the neuroimmune system that we can avoid these relapses. I was fortunate enough to be able to take Valcyte for a number of years, and it helped immensely. (Interesting that Valcyte works specifically against herpes viruses, and I had that herpes zoster infection, isn't it?) So we keep trying new things, and the specialists are starting to sound quite excited about things starting to fall into place, so I'm actually quite optimistic.
     
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  9. ukxmrv

    ukxmrv Senior Member

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    I'm not sure why you have that impression. I was diagnosed with ME as per Ramsay in the 1980's.

    There have been a number of different criteria in CFS and CFS/ME and ME/CFS and even Myalgic Encephalomyelitis: International Consensus Criteria.

    So which of these are you basing your beliefs about "classic ME" on?
     
  10. Mij

    Mij Senior Member

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    I've been sick for 23yrs. Sudden viral onset, Feb. 7, 1991 at 7:10am. I was still able to go to school etc but after I had a series of vaccines a few months later I was never the same again.
     
    Last edited: Jun 20, 2014
  11. m1she11e

    m1she11e Senior Member

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    30 long years!!!
     
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    i feel so insignificant with my short duration.

    I guess im sort of lucky that i was 31, married/kids sort of established etc

    I can only imagine how much harder if one had this in there teens and before.:cry:
     
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