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We’ve all seen them in the news stories about ME/CFS: the guy in a suit at the office, yawning; the beautiful woman sitting at her desk with her immaculate make-up and elegantly coiffed hair, hand to her head and looking slightly pained.
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How Much Longer?

Discussion in 'General Treatment' started by sparklehoof, Jan 5, 2016.

  1. How long is the projected wait time for a treatment that will be covered by Medicare?
    I know we have no exact way of knowing. My doctors have given up and said there is nothing else they can do to help me and I haven't found another doctor who is up to taking me. I know I sound like an impatient wining child in the back seat of the car asking, "are we there yet?" But I'd love to hear from you guys. I've been trying to read journal articles and watch YouTube solve me/CFS conference videos, but I'm struggling make sense of where we are right now. It seems like there are a multitude of hypotheses that range from environmental contamination to gut flora to genetics. There are petitions in circulation asking for funding to test some of these ideas. There's the controversial PACE trial and the RTX trial and experimentation with Miryarisan and supplements... But, I suppose my question is.how much longer do I need to live my life from my bed more than not with no doctor and no affordable treatment- how much longer do those worse off than me have to wait...how much longer do any of us expect to wait before we can access something that at least helps some cohorts? Thank you to those of you reading and those of you who share your thoughts in this thread. Maybe be the double magic super '8' crystal ball:)
     
  2. TigerLilea

    TigerLilea Senior Member

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    I've had CFS/ME for 25 years now and I'm still waiting for a treatment for CFS. As far as I know there isn't one yet. :(
     
    minkeygirl likes this.
  3. Its only been just under 17 years for me. I have no kids, pets, home, assets, spouse, job or anyone that depends on me and I'm not sure how much longer I can hold up psychologically without hope of improving and no responsibilities for others. What gave you hope in the past 8 years? (If you don't mind sharing)
     
  4. TigerLilea

    TigerLilea Senior Member

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    I've accepted that at this point there isn't any cure available and that it might not happen in my lifetime. I'm in the same boat as you - no spouse, kids, house - I do have a part-time job from home and a cat. I don't dwell on being sick; I don't visit CFS forums daily; I try to live as normal a life as possible within my energy limitations.
     
    barbc56 likes this.
  5. That's great that you can work some:) I haven't been very successful with accepting a lifestyle in bed, struggling to read or distract myself. I'll have my symptoms ease up for 20 minutes and all I want to do is go outside and be with family or friends. I'm grateful for those moments and try to make the most of them every time, but I just haven't figured out how to to be happy and find my joy and passion for living when all of my symptoms are flaring. I haven't figured out how to be content in a state of pain, fatigue, congestion, nausea.... You know the rest and have more than I do I'm sure. With no end in sight, I'm not sure if living like this 360 days/ year waiting for the cumulative hours of relief that make up the other days is something that I'm ready to do. I give you so much credit. I hope that you're proud of yourself for finding peace and acceptance under the conditions you have. I'm sure it took and takes a lot of work to maintain that mindset. It's an accomplishment that I admire.
     
  6. alex3619

    alex3619 Senior Member

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    The first treatments might be validated soon. Expect to see maybe two in 2018, one of which may be Rituximab. That is only the start of the story though. They then need official approval. Then the treatments need to be funded, which might take advocacy years ... though that could happen rapidly if there was political will. Then the treatments need to be available. Rituximab is a more or less specialized treatment. There is no way the existing system can currently cope with upwards of half a million new patients. So the medical infrastructure needs to be improved.

    Treatments are coming. Some will be in remission. The timeframe is very much a question of political will and advocacy. Do not expect widespread treatment before 2020. If you have money you might be able to get treatment in 2018.

    Rituximab takes between 8 weeks to 18 months to work if its going to work. So that time needs to be considered as well. My best guess is that this drug will only have a 50/50 chance of working on any individual patient.

    Ampligen has been rejected for use again and again for a very long time. There is official resistance for various reasons to many drugs and therapies, sometimes for good reasons, but often for poor reasons.
     
    Battery Muncher, jimells and Ritto like this.
  7. I hear you.
    I looked into Ampligen and tried for funding. I was also supposed to start RTX a month ago for RA, but my dr cancelled the treatment after the papers were signed.
    It's sounding like my child bearing years will be over by the time something that ma/may not help becomes available to try. I'm probably just having cabin fever from being bed bound for a cople weeks and am feeling like giving up because I want a break from my symptoms, but I'm not sure how I'm going to get through without more relief. It seems like other people on PR are finding a way to accept this situation much better than I am. Thank you for sharing your response. I appreciate it very much.
     
    Battery Muncher, jimells and Mel9 like this.
  8. taniaaust1

    taniaaust1

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    We have some top doctors working on ME/CFS now who say that they may have this solved in just 3 years if they can get enough funding. I try to keep that currently in mind.
     
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  9. alex3619

    alex3619 Senior Member

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    Solved merely means finding a cause, and for a subset, and may eventuate sooner or much later. It is not about cure or treatment. However there is hope that drugs already exist that can be used to treat it, once we know what to treat. The downside is Rituximab is about eight years down that path, from possible treatment to proven. Off label and privately funded treatment for something new might only take a year or two. Insurance coverage will take more years than that.
     
    SOC likes this.
  10. jimells

    jimells Senior Member

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    The Rituximab trials in Norway are a reason to think real treatment will be available "soon" for a substantial subgroup. How soon? My wild guess based on nothing is five years.

    What keeps me alive in the mean time? I am determined to stay alive long enough to see the "Wesseley School" fraudsters held to account in a court of law. Yes it took decades, but even the mighty tobacco companies have been brought to heel (more or less). If I'm going to stay alive anyway, then I might as well try to learn as much about the illness and its political history as I am able, and agitate as much as I can from my couch.
     
  11. jimells

    jimells Senior Member

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    Yes, I have many days where the boredom of just laying around is really hard to take.
     
    Mel9 and MeSci like this.
  12. I'm impressed by you guys. I'm just feeling so discouraged that I feel miserable and it sets into motion a chain of what I consider unhealthy habits. I want to be the change that I wish to see in the world. I'm upset with myself for being weak physically, mentally, emotionally and spiritually. It seems logical that I was a strong person all around and that now I feel like my constitution has been broken after years of efforts to improve my life that have left me with more knowledge and experience but less hope, confidence and seemingly no options to find more physical comfort while I/we wait. Have you guys found ways of dating/maintaining healthy relationships, finding purpose, ways to give back without setting yourself back?
     
  13. Chriswolf

    Chriswolf Senior Member

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    I'm in the same situation as yourself, especially at present. Last night I had quite a few things to do and I had to push myself more than normally have to these days. I came home feeling like I was nearly going to pass out, all of my muscles were on fire and I was absolutely chilled to the bone.

    I saw the doctor again, which was as-usual quite discouraging as they cover the same meaningless ground they always do with no attempt at getting meaningful results.

    It really can make you feel very nihilistic, especially if you're young and you were capable of many great things. Over the last few years I've had to watch my health and my earning capacity pretty much collapse while doctors played petty political games with my health.

    Both in terms of my working life and recreationally I did things that I couldn't even possibly hope to do now. All I can do is hold out until I have the opportunity to see some doctors (out of country) that will perform the tests and prescribe medications necessary to get me on some kind of meaningful treatment pathway. I've more or less had to put it out of my mind that I will be returning to the life I had, which has been a very difficult thing to reconcile, and yes I do very much blame doctors and my healthcare system for that if only because they have made a pitifully minimal effort.

    In the interim it can be a very trying time as you basically feel useless, and what's worse for a myriad of reasons you can feel pointlessly neglected by the system.

    Be glad you have few responsibilities, I know when comparing yourself to the lives of others it may seem unfair, I was well on my way to acquiring a lot of things in life I wanted before illness struck and dashed all of those aspirations. I at least don't have any children, having kids and such a disorder would be a cruel burden, for both oneself and them.

    It's really screwed up but the only thing that I have that saved me was my partner, we've been together for a long time, and based on the toll that my illness has taken on me I'd probably be living on the streets or dead by now were it not for her. I don't want to sound insensitive or spark controversy, but you do at least have something going for you being female with the disorder relationship-wise, generally speaking men are more likely to stay or get involved with somebody in your situation than the inverse. I just happen to be extremely fortunate that my girlfriend does not hold my circumstances against me.

    As far as trying to cope and manage, it takes some level of determination, there are a lot of things I can't do even when I want to. For me even simple things such as trying to resume a small amount of physical activity when possible helps somewhat.

    Even being able to go out for walks when my symptoms aren't on an upswing and the weather permits it is enough to help me get by. Try to organize small things with friends or family if you can, I have a small event I plan on attending in the coming week myself, I'm basically crossing my fingers and taking care of myself as much as I can in the hope that the wheels don't come off when the day comes.

    It is the little things you have to focus on and be grateful for when it is so easy to feel overwhelmed and down on yourself, it takes a strong person to manage this illness especially when you're being deprived help in some way or another, you may not think you're a strong person but you are, we all are for having to push through life in such a manner.
     
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  14. jimells

    jimells Senior Member

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    If one examines your "weakness", from the viewpoint of reading your posts, one finds that:
    1. You found a doctor willing to believe you are really sick, and agreed to a hard-to-obtain treatment
    2. You made arrangements for the treatment, including a place to stay in a very large, intimidating, and unfriendly city
    3. The doctor backed out, not you
    4. And you did all this while extremely ill

    Where's the "weakness"?
     
  15. Mel9

    Mel9 Senior Member

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    T

    That does show great strength
     
    hellytheelephant likes this.
  16. Thank you for sharing your perspective. I'm glad to hear that you have a great partner. I hope to have that one day too. I'm sorry to hear that your doctors have failed you. What country are you writing from? What countries do you believe could help?
    If there is any way that I can help you, please let me know. I'll do whatever I can.

    I've been working on collecting all of my medical records and scanning them. I'm trying to create spreadsheets of my history to try to find patterns that I've overlooked. It isn't necessarily going to lead to anything, but I'm wondering if I can figure out a way to set up a replicable public structure that could become a website where ME/CFS patients could upload their results anonymously and we could create our own database. I know nothing about how to do this, but, I suppose for the last couple of days it's sparked some hope in me that maybe, just maybe it could help us. I'd love to build a team of others who want to join me. What do you think?
     
  17. Thank you.
     
    Mel9 likes this.
  18. PatJ

    PatJ far and free I gaze

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    Physically: try not to be upset about you can't control.

    Mentally and emotionally: You've made it 17 years! There's not a shred of weakness in you for making it so far while dealing with so much. Your words are clear and have a sense of kindness and compassion behind them. You are not weak.

    Spiritually: This can be cultivated even when bedbound. The focus for spiritual development will depend on your faith or inclinations but you can develop wisdom, kindness, compassion, and other qualities by study and interaction with others.

    Here's some wisdom from Winnie-the-Pooh:
    I find purpose in trying to help others on PR and what little I can do to help my family. I'm not, and can't be, ambitious. If I can do a single post here that might help someone, even a little, then it should be good enough for today.

    Here's another quote to keep in mind:
    Lightening another's burden can be as simple as a kind word, or even a smile.

    This takes some adaptation and recognition of limitations. Just by posting here on PR you're able to help others. Sometimes a single sentence can really resonate with another person and help to change their perspective. We all have different ways of viewing the world. Sharing those views can make this illness more bearable by changing the way we relate to what we, and others, are going through.

    Sparklehoof, have you tried LDN (low dose naltrexone)?
     
    MeSci and Gingergrrl like this.
  19. Thank you for your post- I appreciate the reminder that sometimes small efforts are enough to make a difference. I have tried LDN. Did it help you?
     
  20. PatJ

    PatJ far and free I gaze

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    It has helped quite a lot with reducing brain fog, and has improved sleep (I actually feel groggy when I wake up in the middle of the night. This hasn't happened for a decade). I think I'm feeling more mentally balanced with improved mood as well. Did you see any benefit?
     
    Last edited: Jan 8, 2016

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