Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Who are the 10% that get better

Discussion in 'General ME/CFS Discussion' started by nikefourstar, Jan 16, 2017.

  1. nikefourstar

    nikefourstar

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    So I have done a lot of research on cfs for a couple months now and it seems like the leading doctors say there is up to a 10% chance for someone with this to recover. Who are these people?? Did they catch it a bit differently, did their body just decide to go back into regular cycle like what's the deal with this? Because if I don't have a prayer of at least improving then there no way I'll make it a year with this disease it's. It's not worth it.
     
    Last edited: Jan 16, 2017
  2. WillowGris

    WillowGris

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    I'd like to find information about this, too.
     
    Mel9 likes this.
  3. alex3619

    alex3619 Senior Member

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    From what I can tell who these people are is mostly a mystery. We don't really understand. The closest the medical literature comes to discussing this, that I am aware of, is from the outbreaks. It was noted that patients who rested heavily in the early stage of the disease have the highest recovery rate. Also I think there is a problem in that many who are initially diagnosed with CFS actually have post viral fatigue. Most with post viral fatigue recover in six months, though in rare cases this can take five years. There are also sometimes other causes of fatigue such as undiagnosed anemia, etc.

    The problem, according to this theory, is that most people do not rest enough, and the disease becomes chronic. That would be most of us. We have lives we want to get on with. Contrary to the psychobabblers we usually don't just stop unless we have severe ME. We try to keep going as long as we can. That is a problem. Its one reason why we need a test for early diagnosis.
     
  4. nikefourstar

    nikefourstar

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    Well I'm in the early stages of my illness and all I have been doing is resting as much as I can, unfortunately ive never had anxiety this bad or been this stressed out or scared,, don't know if that contributes to it, but I seem to be declining since I first got sick.
     
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  5. nikefourstar

    nikefourstar

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    I should mention my situation was very unique but I still have all the hall mark symtoms like the Nrs and the Pem
     
  6. Dechi

    Dechi Senior Member

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    Yes, anxiety can exacerbate your symptoms and make everything worse. Managing your anxiety is very important. Imhave GAD and I am currently in therapy and it's helping a lot. Not the illness, but the anxiety. And my sleep, because the more anxious I am, the less I sleep. And the less I sleep, the worse my symptoms are.
     
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  7. nikefourstar

    nikefourstar

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    How bad is your cfs though do you actually wake up refreshed?
     
  8. Dechi

    Dechi Senior Member

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    @nikefourstar Very rarely. I feel tired when I wake up, no matter how much I sleep. The fatigue is a state of being now. I would say I have light/moderate ME. I am functional as long as I limit my activities and rest a lot. And have a strict routine, and eat well. I can't do any strenuous exercise, but I have found a way to exercise a little bit. About 15-20 minutes per week, split in 4 days (5 minutes per day on average).
     
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  9. nikefourstar

    nikefourstar

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    Was it always like that, were you ever like me in bed all of the time. I just wish that I have enough energy to not feel like total shit when I wake up and spend time with my loving family who is very scared for me. But they don't even know how serious this illness is yet
     
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  10. Dechi

    Dechi Senior Member

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    I was never bedbound, I was lucky. For a while I thought I might lose the use of my legs, but it never happened. I am still in the early years of the illness and I am trying very hard to rest and not make it worse. I don't push thorugh it, it scares me too much. I did at first, before I knew I was sick, but it made me a wreck and I had to stop.

    I hope you recover enough to have a family life.
     
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  11. Sushi

    Sushi Senior Member Albuquerque

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    We vary so much. Unless I am in PEM, I will have a few good hours after getting 10 hours of sleep (and a nice mug of coffee!), yet I am probably in the moderate category. Now abouts (8 p.m.) I am really tired.
     
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  12. Sing

    Sing Senior Member

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    If you watch the video of Fluge talking about his research studies, he says at some point that he believes that ME/CFS is reversible (curable or very treatable)---meaning that it will prove to be so, following up the line of research he and others are pursuing. So that is very hopeful.

    On the other hand, my impression is that the recovery rate is less than 10%. My own view actually is that it is 0% for those who meet the Canadian criteria. But no one knows for sure. I have heard two of our long time experts, Dr. Komaroff and Dr. Bell, both say in video interviews that none of their patients ever fully recovered. But each said that some have improved a lot in terms of being able to have a fuller life, but on closer inspection, this is due to careful pacing, medications, and other self care measures. In fact, Dr. Bell said that some of these patients even regard themselves as recovered, but he has seen that if they overexerted themselves, they would again relapse.

    For you and all of us frankly, learning all we can how to manage our illnesses as well as we can will help, and maybe a great deal. Then watching the latest research for when a real scientific breakthrough does come--while hopefully avoiding the pursuits of disappointing fads and miracle cures, which greatly abound, because those can pitch us into despair too.

    Objectively I do think there is more hope now than ever before because of the good research that is finally happening. Meanwhile reel back your focus to one day at a time and to the priorities you can set, while knowing that when you can reach out, there are other people here willing to share their experience, knowledge and caring with you.
     
    Last edited: Jan 16, 2017
  13. nikefourstar

    nikefourstar

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    So it seems that I'm worse than I thought, if I keep progressing like this then I'm pretty much going to be bed ridden for the rest of my life,
     
  14. Sushi

    Sushi Senior Member Albuquerque

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    I don't think you have had a diagnosis of ME/CFS yet, have you? (and probably at least half of the ME/CFS diagnoses are not right in any case) So you may be making assumptions based on an illness that you don't have. And, even if it turns out to be ME/CFS, research is VERY promising, so the chances of being bedbound for the rest of your life are receding day by day. Also, "progressing" is not linear--most of us go up and down. And, with appropriate treatment, many, if not most, make small significant gains rather than continuing to get worse.
     
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  15. Dechi

    Dechi Senior Member

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    @nikefourstar now that you are aware of your condition, things have a good chance of getting better, not worse. You might want to read on this forum about the different meds and supplements that are helping the most. But be warned, everybody has their own idea of what works best, because everybody is unique in the treatment they need.

    This means you have to experiment, but at least you can start with what works for the most people. I found something that helped me, after a whole year of trial and error and having PEM because I was doing too much. Now I am not cured, but more stable. Don't despair, it can get better.
     
  16. nikefourstar

    nikefourstar

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    I haven't had a diagnosis yet but I have PEM and NRS what other illnesses out there have these two factors, plus I feel worse then when I did when I first felt something was way off? I have pretty much gone crazy about this. All my dreams are gone. I really just wish I had enough energy to be with my family. And I don't think I can stick around long enough to wait for a treatment or cure
     
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  17. nikefourstar

    nikefourstar

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    I think the worse is the non restorative sleep more than the pem and I'm not sure I don't think there's anything I can do to help myself
     
  18. Sushi

    Sushi Senior Member Albuquerque

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    What are you trying to say? Why couldn't your stick around long enough to wait for a treatment or cure? Read peoples' stories here. It isn't like people quickly plummet into such critical health that they die. Yes, some very long term patients have died, but that whole scenario is likely to change quite soon. Many here have held on for decades and now are getting some hope for improvement.
     
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  19. nikefourstar

    nikefourstar

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    No like I would kill myself, I can't keep doing this. It's a living hell.
     
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  20. nikefourstar

    nikefourstar

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    But why do you think now is going to be the time when they find a treatment? Haven't you been hopeful over the past 10 years I'm sure? Why is now so special? I'm just wondering I'm just really fucking scared and didn't get to do anything in life yet that I wanted to do.
     

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