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False hope?

Discussion in 'Lifestyle Management' started by neweimear, Oct 6, 2017.

  1. neweimear

    neweimear Senior Member

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    Hi,
    I am 41, mother of 3. I have posted before about feeling suicidal. I don't feel that way now but I feel like I have hit a wall in terms of searching for answers. I went thru a phase of saying...when they find treatment, I will do a,b and c. But now, I have stopped. Is there hope of effective treatments in the next decade? I am starting to think it will be a minimum of a decade. Aside from rituximab.

    Am I facing a life sentence with this disease? Is that what I need to accept. Should I stop hoping and get real?
    Interested in what u all think?
     
  2. Invisible Woman

    Invisible Woman Senior Member

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    Well, right now we don't know for sure but things seem to be snowballing a bit.

    There is rituximab but also cyclophosphamide. There may well be others - perhaps drugs currently used for other things. Once we start getting a few more answers over the next year or two I'm hoping that progress may speed up a bit more.

    It is the most hopeful I have felt in the last 20 years, if that helps.
     
  3. Philipp

    Philipp

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    Within a decade? I would say so, yes.

    Suramin is a possibility that might be available to us in 10 years time. Or maybe another antipurinergic drug that has yet to be developed. Apart from that, there are quite a number of people who had success in some way at least mitigating symptoms to a large degree. Don't get your hopes up too much with any one treatment, do grieve if you failed yet again, do be sad if something did not pan out for what may seem like the millionth time - but, in my opinion, it is not unreasonable to assume that some time down the road something will actually help you.

    Keep in mind that is it impossible to correctly guess how much stuff that we do not know about will impact our lives. Things tend to work until they don't without a gradual slip one way or another. i.e. while there may not be anything that is on our radar right now that might end up working out, we may get surprised at one point and have a handle on this stuff within half a year.

    While it may not be realistic to assume that the 'big thing' is around the corner, I myself have always been telling me that I would feel really stupid if I died half a year before we unexpectedly 'solved' ME to a reasonable degree. What is there to lose? I have been pushed so far beyond what I thought a human being can reasonably take so many times by now and I am still alive. If someone like Whitney can go on, so can I.

    I don't know if that helps you at all and please, do not take offense or feel invalidated in what you are going through if anything I've written pushes your buttons the wrong way because I surely did not intend any of that! And by the way, I have noticed that for me, if I treat suicidal feelings as a symptom of my illness that hits me from time to time, I feel like it is not as bad. I do not know how much of this is due to an illusion of control, but I occasionally did have some success in making this go away with supplements/OTC medication (seems to be histamine/inflammation/wired&tired related for me, ibuprofen + an antihistamine + niacin sometimes did the trick, but please do not assume it is the same for you without good reason).
     
    Last edited: Oct 6, 2017
  4. Wonko

    Wonko Senior Member

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    The other side.
    Just settle back, relax, and "enjoy" the ride, with the odd scream/whimper/rant when it seems appropriate. In all probability we're gonna be here for a "while".
     
  5. neweimear

    neweimear Senior Member

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    What is your idea of 'a while'....a decade or beyond? I see very little to enjoy about the ride I am on, I hate it.
     
  6. greeneagledown

    greeneagledown Senior Member

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    Rituximab is a promising lead and if the phase 3 trial is successful, it should be available pretty soon. Cyclo is a lead, although it would probably only be justified for the bed-bound (and maybe more severe house-bound). Suramin is more tenuous but might work out. If any of these three drugs work out, my guess is they'll be available in less than 10 years.

    If and when the underlying disease mechanism is uncovered -- which could happen any day -- pharma will be unleashed. If the mechanism were discovered tomorrow, I would anticipate a new, effective drug hitting the market in about a decade.

    But balancing hope and acceptance is something I struggle with every day. I try to accept where I am now but not give up hope for the future. It is hard.

    Just remember you are not alone and that tons of people have this disease. When I'm not on PR, it's easy for me to forget that.
     
  7. neweimear

    neweimear Senior Member

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    Thank you. I seem to need constant reassurance of some sort. You are echoing my own thoughts. I hope people keep donating to OMF, if Mark Davis can confirm autoimmunity...that would be a big step forward. He really impressed me at the Symposium.
     
  8. greeneagledown

    greeneagledown Senior Member

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    The good news is Derya Unutmaz, who got one of the COE grants, has found preliminary evidence of T-cell abnormalities and is going to do more digging with this grant money. I don't know if they're the same findings, but Mark Davis also found T-cell abnormalities.
     
    ladycatlover, MeSci, MEMum and 5 others like this.
  9. Wonko

    Wonko Senior Member

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    The other side.
    A "while"? An indeterminate amount of time.

    If you have access to cutting edge medical care then possibly under a decade, if not......as has already been posted even if a "cure" was found today it could easily take a decade to filter down to individual GPs.

    You're younger than me, I would expect a cure, or at least treatment, to be available within your lifetime.

    I no longer expect it to be available within mine. I've had this for coming up to 29 years, I have missed all of the "important" things in life, so it's probably going to be too late for me regardless. I don't worry about this, I, generally, do not despair about this, think what could have been, the things I have missed etc. I just accept what is is

    Acceptance is a difficult thing to learn, but it must be learnt, in life not just in M.E. (some things just are), it isn't about fighting, it isn't about hope, it's about just getting your head down, enjoy what you can, and simply wait it out.

    Nothing lasts forever.

    edit - try not to hate it, hate burns resources you need.
     
  10. neweimear

    neweimear Senior Member

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    Jeez Wonko, 29 years. Thank you for your reply.
     
  11. IThinkImTurningJapanese

    IThinkImTurningJapanese Moderator

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    Don't stop hoping.

    And don't wait for Rituximab, or whatever else, find some relief now. This site is full of options that have given people some help.

    If I were in a different place, I would probably try LDN, it seems to have a good track record.

    Ohh, don't torture yourself with thoughts of a "normal life", it doesn't exist.
     
    ladycatlover, Jan, JaimeS and 10 others like this.
  12. TigerLilea

    TigerLilea Senior Member

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    I have had CFS/ME now for almost 27 years. I realized about 10 years ago that I needed to accept that I will probably have this for the rest of my life. I went through a grieving process and eventually came through to the acceptance stage. The sad truth is that at this point in time, there are no answers. Medical science still does not know what CFS/ME is, nor do they have a treatment for it. There are a lot of theories, but none that have been proven and replicated. Until this illness is taken seriously and more money is put into research, I don't hold out much hope of seeing a cure in my lifetime. I hope that I am proven wrong. :cautious:
     
  13. TigerLilea

    TigerLilea Senior Member

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    I used to think that, but then I started thinking about all of the other illnesses out there that are much better funded and researched than CFS/ME but still don't have a cure or effective treatment. A few that come to mind are Rheumatoid Arthritis, Parkinson's Disease, and Multiple Sclerosis. They might have drugs that help temporarily with symptom relief, but for the most part these people don't have their lives back and live with their illness every single day. :(
     
  14. greeneagledown

    greeneagledown Senior Member

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    RA has multiple effective treatments. Parkinson's and MS involve neurological damage, which is a whole 'nuther ballgame. Unless CFS also involves significant permanent neurological damage, it's a very different situation. We are certainly more than a decade away from figuring out how to regenerate brain or nerve tissue.
     
    ladycatlover likes this.
  15. PinkPanda

    PinkPanda Senior Member

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    Hello,
    When being sick and everything is so hard, I often lose sight of how much we do.
    Healthy people walk around and do a lot of stuff, but we have to work so hard and do so much to even get through the day and I think that is worth so much. It's easy not to see that because no matter how you try, you can't show much visible for your efforts most of the time. But I think it's worth a lot.
    And I think what you are doing, trying to keep going, is worth a lot and amazing.

    And I think there is a chance of some treatment sometime. There is more research and attention than ever before for ME/CFS, there is clear progress and I think there will keep being progress until at some point we get there.

    :hug: I send you my best wishes!
     
    neweimear, ladycatlover, Jan and 6 others like this.
  16. greeneagledown

    greeneagledown Senior Member

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    If this does turn out to be an immunological disease, the nice thing is we may be able to piggy-back off of new immune modulators that come out for other medications.
     
  17. neweimear

    neweimear Senior Member

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    A girl that lives near to me has MS, she cycles, walks and works. Drugs have helped her function. Im not saying she is symptom free but she has a reasonable life when compared to healthy people. I am almost housebound, spend most of the day on the flat of my back. There is a difference. There are so many approved drugs for MS, at least u have options. We have no effective options, approved for our disease. Its only recently johnathan Edwards said that there are medications now that allow those with autoimmune disease to lead good quality lives. We are in a different pot entirely. So I dont think u can compare ME to diseases that have FDA drugs to treat them. These drugs may not be effective for all but they must work for some patients.
     
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  18. neweimear

    neweimear Senior Member

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    Normal life does exist, I lived it until I got hit with this.
     
  19. TigerLilea

    TigerLilea Senior Member

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    Unfortunately, this becomes our new "normal". I've had this for almost half my life now. :(
     
    ladycatlover, Joh and Wonko like this.
  20. IThinkImTurningJapanese

    IThinkImTurningJapanese Moderator

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    And you are still living it.
     

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