The Pathway to Prevention (P2P) for ME/CFS: A Dangerous Process
Gabby Klein gives an overview of the P2P process, shedding light on the pitfalls with advice as to what we can do in protest ...
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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.
     
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  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 Studying neurosomatic medicine

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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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  13. Unduki

    Unduki

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    I'm coming up on 30 years. I consider myself in remission since 2011 but I'm not fooling myself. It's still there, like a shadow.
     
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  14. alex3619

    alex3619 Senior Member

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    Lots of people with ME are diagnosed with MS first. Similarly, lots of people with MS are diagnosed with ME first. The issue is that the "diagnostic" findings in MS are similar to those found in ME. One expert some years ago put it this way. There are many who clearly fit the MS definition. There are many more who clearly fit the ME definition. In between there are many in whom the diagnosis is uncertain.

    MS does not have a definitive diagnostic test.

    I am not saying MS and ME are the same. I am not even saying they are at different ends of a spectrum, though this would not surprise me. What I am saying is that there is shared pathophysiology, and that there are similarities and differences, and that in time when we understand both conditions better we will be better able to describe the relationship, if any, between ME and MS.
     
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  15. Misfit Toy

    Misfit Toy Senior Member

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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. Even though I am now a jeweler, 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.

    Or, to never have the career I wanted.

    Anyway, it amazes me when people talk about remissions. Since 1989, I have not had ONE DAY of feeling like me. Not one. I have never had a remission. Ever. 26 years of hell. When people talk about going from death's door to going back to work and being symptom free, I wonder...HOW? I don't not believe it or them, I just have never had that thrill of experiencing that. I am totally jealous!

    On to something different about this discussion...I ran into an ex boyfriend a few months back who looked at me with such disdain. He was so angry because I wasn't able to be with him. I was too ill. Anyway, he saw me and gave me a look that gave me chills and all I could think is..."Did you really think I wanted it this way? Yes, I look good, but I am still sick and things are worse now. I am worse. And you just looked at me with this look of death. Absolute hatred was on your face. Why? I can't help that I am ill!" It was bad enough that we had to end but then to feel this hatred he spewed my way for something I have no control over and has only gotten worse.

    It was a double whammy of how my life has unraveled and how a well person can have such disregard for how sick I am. I am sorry I messed up YOUR life, mine has completely become even more unmanageable at times. And you hate me?? Gosh...thanks.
     
    Last edited: Dec 14, 2014
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  16. jann1033

    jann1033 Senior Member

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    I have sayI agree about people being healed from this. I just always wonder how. I see some that basically just changed their diet and i cant help but wonder did they ever even really have this? My stepsister was dxed with cfs a few years ago after a few weeks of not feeling well and was cured a few months later. When i got sick, i was eating a healthy diet, exercising, basically healthy,happy, energetic and within24 hrs. my life changed. I just dont get how i could have done anything differently than what those who were "cured" to still be sick26+ years later and truthfully getting worse, slowly but consistently worse
     
  17. jann1033

    jann1033 Senior Member

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    Sorryi meant to replyto misfit toy, brain dead.
     
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  18. Misfit Toy

    Misfit Toy Senior Member

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    @jann1033 - I have known a few who have gotten "well" with CFS. Most of them had some sort of chemical poisoning or something where it was extremely clear as to what had happened. Many did not have EBV or viral situations. That's why this illness is called the "wastebasket diagnosis."

    One guy had been poisoned by some sort of bug spraying that was going on. He became obsessed with cleaning out his liver and working on regaining his health and he was able to do so. So, for about 2 to 3 years was his time frame of being ill and by 1999 he was fine.

    Would I call that CFS/ME? No, I would say he was poisoned and his liver and body was under stress and then he got well.

    There is true ME/CFS and then there is something that kicks it off and once that stresser is taken out of the picture, they get better. That's not CFS/ME.

    Many people have thought they had CFS when they really just had an environmental illness. Mold, living in toxins, etc. It starts to look the same as CFS/ME, but different.

    Some may go back into not feeling well because their body never bounced back quite the same way. Their organs were effected too much.

    Women are harder to recover. We have hormones and pathways that men don't have. It's much harder for us. But, many men are sick with this, too.

    Who the hell knows but I think there are different variations of this condition and it depends on the genetic code we each have. Someone else could have the same thing happen to them that I had, the EBV, but they may have recovered. As I am going along, I am finding out that this puzzle was actually set up for me. My DNA was configured so that if I did have this happen to me, if the switch had been flicked, there is no way to flick it back.

    I know my brain is not up to snuff and my adrenals will never truly heal. I am not the same anymore. As the years go on, the pain, the whatever, they are stripped of each layer that holds the adrenals in harmony. But, somehow, I am still here and I am still intelligent. I think it's my way of giving my middle finger to whatever this "crap" is.

    It can be controlled and that's it. And maybe as more years go by, and more grey hairs appear...something more will reveal itself to us..who knows.
     
  19. Gingergrrl

    Gingergrrl Community Support Volunteer

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    @Misfit Toy I am starting to think the same thing, that EBV flipped a switch (that was preceded and followed by other medical stressors) but the EBV flipped a switch that was contained in my genetic code and once it has been set off, it cannot go back. Unless they find the actual mechanism and cure (which could happen) but until then, it seems my fate has been sealed. Sorry to be so negative.
     
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  20. Misfit Toy

    Misfit Toy Senior Member

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    @Gingergrrl , when I came down with epstein barr, I was so tired. I could not stop sleeping. Fever blisters throughout my mouth. My every thought was plagued by fatigue. After months of a cold, glands that killed me and vertigo, I remember being in my parents house staring at a clock and it was like all of the numbers just sped up and stopped at 12 o'clock and every ounce of serotonin left my brain. I went, right then and there, into a severe depression. Everything broke right then. Bad news hit me....I had just heard bad news and it sent me over the edge, on top of having at that time, an active EB virus. It was positive and active.

    That was it. Ever since then, my brain, body, every gland, ounce of energy was never the same. My adrenals were spewing adrenaline and my thyroid was a mess. That virus screwed up everything. No one can tell me differently.

    I was a few months later, dehydrated for no reason...so many symptoms and everything that no one could put their finger on but they also couldn't say nothing was wrong.

    I always had a weak immune system, but EBV put me into "this." And for sjogrens, most people have had EBV and they feel that EBV is the main culprit for Sjogrens, in the latest book that was released on the disease. And, I now have Sjogrens. Plus, I have idiopathic cd4 lymphopenia, which is low lymphocytes. It's a specific test. I had never had the test before and according to my immuno, it has always been this way....but....has it? Or did the EBV tire the shit out of my lymph system.....I think about all of this. Viruses can change your DNA or how things work...they can.

    A puzzle.
     
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