Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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plan for no cure and hope you're wrong

Discussion in 'General ME/CFS Discussion' started by Bander, Nov 22, 2017.

  1. Bander

    Bander

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    Clearly many of us are deeply disappointed by the news that the Rituximab phase III trial was negative. For me, this is déjà vu all over again. I first started researching cfs around 1993 when I was first diagnosed (5 years into my illness). I found positive news items about an experimental drug that was being tested. Doctors who were treating cfs patients reported encouraging results and said that it should work given their theories about what causes cfs. I thought to myself, "Maybe I only have to live with this for another year or two years because this drug will work and get approved." Then I noticed that the news articles I was reading were several years old. The drug was Ampligen and it never panned out as an approved cfs treatment.

    I'm sure that what I'm about to say will be controversial, but I offer it as sincere advice from someone who has lived with this disease for many years. You should give up on believing in a cure. Spending your precious energy on hope and following every minute detail of the latest research is ultimately not helpful. Don't ignore research entirely, but don't let it consume you. Move on.

    For me, that led me to finally accept the loss of the person that I was before I got cfs. That was so painful for me that I wanted to kill myself rather than accept it. I really liked the person I was before and I didn't want to let him go. But I had to. That was the first step in being able to focus my limited energy on discovering the person I am today and who I can be tomorrow.

    I do think there is reason for more optimism today. Ron Davis and the folks at the Open Medicine Foundation are doing really innovative research with world class scientists. Robert Naviaux has novel ideas that show promise, although I worry that Suramin will become the new drug we chase after. The recent funding of NIH sites for cfs research is a great step forward. Other than the disastrous PACE study, the trend in general has been towards better understanding among doctors, researchers, politicians, and the general public. So perhaps Ron Davis is right when he says he thinks we can find a cure relatively soon.

    For me, I continue to assume there will be no cure. If a cure is discovered, I will be the first to apologize to those who were offended by this message because they think it is better to hold on to hope. We all have to make our own choices about how to deal with this disease. My advice is to consider living the best life you can assuming there will be no cure. It's working for me. I have a pretty good life although it's different than what I had before. And if a cure comes my way, I will have the chance to meet yet another version of myself because that future me is certain to be different from who I was before and who I am today.
     
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  2. hellytheelephant

    hellytheelephant Senior Member

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    @Bander - I completely agree. This is a wonderful piece of writing written from the heart.

    There is Hope, but that comes from feeling hopeful about how you can cope with the day/week/month/years ahead.
     
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  3. MartinDH

    MartinDH Senior Member

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    Hope is the source of my resilience.
     
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  4. ljimbo423

    ljimbo423 Senior Member

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    Hi Bander - As someone who is and has been driven by hope, I am not offended by your message. I agree that we all have to deal with our CFS in ways that work for us as individuals. My hope, research and trying many different protocols.

    Has taken me from 80-90% bedridden, sleeping 12-14 hours a day and only about 30-45 minutes a day of physical activity. To 4-5 hours a day of physical activity, sleeping 8-8.5 hours a day and I just feel much happier.

    As you say though, it is up to the individual. What has worked for me will not work for everyone, for many reasons. I hope you continue to find acceptance.

    This is a very important statement I think! I have learned not to put all my eggs in one basket so to speak. I follow the research but I try to take all research with a grain of salt.

    I have a working theory as to what caused my CFS and how to treat it accordingly. I have gone from a 3 on the bell scale, to a 5 in the last 7 months, so it is working.

    All the best, Jim
     
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  5. Ravn

    Ravn

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    Well said @Bander. A more exhaustive way of stating my own philosophy of prepare for the worst, hope for the best and, in the meantime, take one day at a time and live it as well as possible.
     
  6. neweimear

    neweimear Senior Member

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    Bander. Thanks for your honesty. I agree with you to some degree. I am just getting past the I want to kill myself phase and I am consumed by research. My problem with acceptance is that I am very ill ,almost housebound. I can't relate to the healthy world, clothes, Christmas parties etc...things I loved gone. It is hard,isolating and scary. Will I get worse. What will become of me? Research gives hope of a way out at some point. But being glued to it constantly is not right either as I have children. Yet, I can do very little with them, talking drains me at times. It takes effort. I want to find a way forward and what you say makes sense. But I don't know if I'm ready to fully accept no treatment/cure because if I do, I cant see myself lasting too long. Just my thoughts. We all need peace of mind to some degree while dealing with this horrendous illness.
     
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  7. neweimear

    neweimear Senior Member

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    Can you elaborate Martin?
     
  8. Nickster

    Nickster Senior Member

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    Bander thank you for your honesty and your veteran advice on this disease (diagnosed since 1993). I am a caretaker to my 26 year old son who is just about bedridden and I have become consumed with research and doctors and more and it gets to me. My husband has told me to disconnect from it and take a break. Acceptance is a powerful thing and that is needed in this situation whether we like it or not because we have no control over it.

    I do still have hope that something will be found whether its from Ron Davis, Lipkin, Hanson or the others.

    Thank you for your wise thoughts.
     
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  9. Bander

    Bander

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    It sounds to me like you're deep into the mourning of the loss of your old self. You said as much yourself. This totally resonates with me. I still sometimes shed a tear or two when I think of things I've lost. It's okay to grieve. But don't let it define who you are now.

    I still remember a point when I was bed-bound most of the time and I complained to my doctor about how I really wanted to participate in a political message board and it upset me that I couldn't even do that for more than 15 minutes without becoming exhausted. He said it was great that I'd found something that motivated me enough to get out of bed for 15 minutes and he said to keep doing whatever it was I was doing so that maybe I could turn 15 into 20, then 20 into 25, and so on. At first it really made me angry that he wasn't agreeing with the idea that my life was terrible, but I came to realize that he wanted me to focus on the positive. I needed to stop comparing myself to what I used to be able to do or what other people can do. I had to figure out what I could do now and use that as my basis of comparison going forward.

    These are tough questions and there are no easy answers. I like the comments that others have made in this thread that I was wrong to imply that you should give up all hope. Just don't pin all of your hopes on a cure. Most of us who have lived with this for many years have found that over time you can find ways to cope with the condition better. I couldn't have imagined in those early years that I would reach a point where I could hold down a full-time job, but that's where I am now.

    This disease tests each of us and many of us feel that it is stretching us farther than we can be stretched. And yet, most of us do make it through somehow. Having the support of the community here at PR certainly helps. It's hard to talk to family and friends about this, but when you do, you might find that they can support you more than you expected.

    You need to find coping mechanisms that help you through the worst days. Each of us will do this in a different way, but in case it helps, I'll share one that helped me. There was a news item about a PowerBall jackpot that was setting a record and I bought a ticket. I remember fantasizing about what I'd do if I won millions of dollars. I thought I could use the money to do some good in the world. And I remember thinking that if I won that jackpot, then I wouldn't want to kill myself. And then I realized how silly I was to think that I'd only want to live if I won millions of dollars that way. Money isn't the only way to do good in the world, so if that would be enough of a reason to continue living, then perhaps I could find another way to do the same thing even with this horrendous illness. Sometimes just getting out of bed for 15 minutes to participate in a message board is an act worthy of praise. Give yourself the praise you deserve and perhaps some part of the old you will come through enough to give you the strength to make it through.
     
  10. pibee

    pibee

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    I am not offended, but I am confused by suggestions to move on, what do people who are seriously disabled do when they move on?

    I get this advice from my family too, my sister is MD who doesnt acknowledge ME as a real biological disease..., so by moving on she thinks:'go to gym, go to yoga class,' local spa, ...

    All things I mostly cant do.

    So what do you do when youre not waiting cure?
    If you're disabled


    I had limited range of activities, but for ME person very good actually, I could do: much social life, less than I would if I was healhy, but was much and each day, concerts, museums, etc. Sometimes even skating, often dancing.
    I did ful time school even tho going to classes each day, esp bc of sleep disordet, was too much but with a bit of cheating I'd skip some and did it 3times a week on avg.
    I watch movies, series, read and do some side business that helps me survive


    Way I lived listed above was before treatment damaged me, now I do half of that, trying to get back to that, but as described even then I couldnt move on because brain fog prevented me fom following 90% of my dreams

    All this might be a lot for ME even though I suffer each minute because ny brain is never normal and energy is never normal, but there is much longer list of things I cant do than the ones I can ... so I just don't understand how to "move on"- to what?

    Also because os social and family pressure to stop being sick and find a job, because I'm not for real sick (according to authorities and family) of course'90% of focus is on finding a cure, as I age I canr forever make up excuses for not working, and cant even get any income for being sick... So it is absolutely constant stress and pressure to recover

    I seriously live for 12 years with a fear I will end up homeless if I dont recover because nobody except my mother (she also does very little) cares for me in family because ME doesnt exist.
    My mom is frequently told by friends she should kick me out of apartment if I only lay and sleep, to teach me lesson.
    That is awareness we have here
    So what am I missing in moving on...
    How to numb your dreams
    Every three minutes I am reminded by my own thoughts of things I cant do. Especially because cognitive problems are always there and whatever I do it is there to remind me of "blocks' in my brain
     
    Last edited: Nov 22, 2017
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  11. neweimear

    neweimear Senior Member

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    Yes, very valid point. Move on to what. The reality that I've lost so much. Work, social life, alot of friends, gone. Its pretty grim to take your head up from the research and face the massive loss head on. I know I can knit and read but letting go of being constantly glued to my phone will be hard. I will have to wean myself off it. It is hard to face the harsh reality. It is hard to put the phone away. So much loss is just so sad.
     
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  12. pibee

    pibee

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    yes, and some definitely cant even read... i can read when i have to but i dont do it for pleasure for sure... and knit i def cant... motor planning is most dsitubed fo me..
    best is to live normally as much possible as you can , but dont we do that already..
     
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  13. notmyself

    notmyself Senior Member

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    the human body is wired to heal itself! there will always be hope..
     
    Last edited: Nov 22, 2017
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  14. Ember

    Ember Senior Member

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    Your doctor suggested that you’d found something sufficiently motivating to get you out of bed? ME patients can generate lists of activities that they’re motivated to perform. And they can tell you what happens when they try. Just as you did. Congratulations on surviving your doctor’s ignorance. Your response is a testament to your resilience.

    Here’s another take on your doctor’s reframing, one that I’d recommend to those who can read: “As long as I have been suffering from my illness I’ve read and have also had some people tell me that the cause and course of my disease rests in some way in my own hands. I have always found that remark quite hurtful but most of all, unfounded.”
     
  15. lior

    lior Senior Member

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    Interesting thread :)

    I read a really useful book called How To Live Well With Chronic Pain and Illness by Toni Bernhard. She talks about acceptance a lot, and how to get there. It's really helped me on my journey.

    There's also a lot of stuff out there about disability/ability. Disability is a social construct. I'm currently challenging myself to value myself beyond how well I fit the capitalist ideal of a super productive worker and consumer.

    This is how I 'move on'. I let go of ideas about myself that I had before, and I adapt to my new self. I look in new places for ideas that fit my life now.

    I am in the process of letting go of hope for a cure, but I am hopeful that my body will eventually heal itself, if I continue to listen to it carefully and act accordingly. Letting go of hope means I won't be disappointed, which can be crushing. Me letting go of hope is not going to affect whether or not a cure eventually comes along. I can still be an activist/donate to research regardless of how soon the cure will be invented.

    I do believe a cure will come eventually, but not necessarily within the next 10 years. So I guess I am still hopeful in a way! Just not for myself, not for a cure happening for me.

    I have to accept my life as it is now in order to be happy. I'm actually enjoying the process of learning more about myself through this lens of this illness. I am growing as a person and becoming more wise.
     
  16. char47

    char47 Senior Member

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    I relate to what you're saying @Bander.

    This is just my account of how i got to a similar 'place'.... its way long so i wont be at all surprised or offended if no one bothers to read it :)

    My ME started (pretty mild initially) in 2000, i tried to ignore & 'positive think' my way out of it, & collapsed with severe ME (mostly bedbound completely housebound) 18mnths later.
    Once i learned to pace myself & manage things better i improved to the severe end of moderate (mainly housebound sometimes bedbound). Since then it's been stable.

    For the first 8yrs I tried everything & anything to cure myself, & every Christmas, every birthday i said to myself & amongst my friends & family "this time next yr I'll be better" 'dont give up' etc etc etc.
    But every yr when it came around & i wasn't any better it was like a punch in the gut. The disappointment & shock was just like a torment. And in 2009 I realised it was no way to live... all this focusing on 'next yr when i'm better' or 'in the future when i'm well again', was stopping me living in the here & now.

    And i had to face the awful reality that quite probably no, i wont ever work again, ride a horse again, make it to any weddings or parties again, travel again, and it's very possible i will never be any better than i am now. And all those dreams i had?.... no, the fact is that they might well never come true.

    That was an EXTREMELY hard truth to turn into and face. Just letting the suggestion 'in' was horrific, it felt like a moral failure, like i was giving up hope, being negative, like somehow if i stopped believing, resolutely & deterninedly that i would get better, then i would somehow stop myself from getting better.
    But that is CBT/LP nonsense. So i did turn & face it, because i felt that i had to face reality, no matter how hard or appalling.

    And facing it led to a major period of grieving..... first off i got angry, i mean really *%@!!*** ANGRY.....
    At the injustice of it, at the unfairness, at the sheer ruddy powerlessness of not being able to MAKE my body do what i wanted it to, the fury at not being able to think my way out of it, at the fact that the life i loved, my whole world, was gone. And at the powerlessness of not being able to force any more research to be done. And at those people who've prevented that research from being done.
    And i stamped and swore and punched a lot of cushions. it was not pretty.
    It's a f*ing outrage that any of us have to live like this, I was so incandescent with rage that it was all just gone, stolen, lost, gone & likely I will never get them back.

    And the pain of that, the horror, the utter unthinkableness of never being able to go out on my own ever again, of never being able to cook my own dinner again, never sing in the choir again, see the sea again, get married, have children, earn my own money. That that life, that person, was gone & quite likely never coming back. Was so terrifying & excruciating i could barely breathe for the panic & grief of it. And i cried, all the time, for days. (I was fortunate to have a couple of people in my life that understood that grieving was healthy & not negative & they got angry & cried along with me).

    But..... Then the sobbing stopped, and it just didn't seem so bad anymore. I dont want to sound like a cliche, but i remember the day the sobbing stopped. I remember looking outside & seeing a blue tit at the bird feeder, & honestly feeling more joy than id felt in YEARS. And somehow that grieving, that letting go of the old life, the old me, made space for appreciating & finding the good in what i still do have, which i was simply unable to see while i was trying to hold on to the belief that i would get it all back 'one day'. I've found that grieving the loss of what was has made room for something new & enabled me to see the true value of what i do have.

    I'm not talking about resignation & pessimism, or 'losing hope', I hold a little hope in my heart always, because, well you never know.... And i'm always interested in the new research, i keep up with what's going on, but i've accepted that the probability of getting a proper treatment within the nxt 10-15yrs is not really very high, i mean it'll be wonderful if they do but i'm not expecting it.
    And that doesnt mean that the loss isnt painful anymore either.... just as i still have a good cry over the death of my loved ones sometimes, sometimes i still feel the pain of my situation, but it's not continuous, and allowing that grief to come forth i find so much more freeing when it passes. I think certain types of hope can be a tyranny sometimes, there is a freedom in acceptance, I find i can deal better with what IS when i am thinking & focusing a lot less on how i wish it were.

    But just as you said Bander, we all have to find out own way through this shitty situation & this approach wouldnt be right for everyone, but it's made me able to find the positive, to find joy in the smallest of things.
    But the craziest thing about it was that i couldnt do any of that until i got really "negative" & realistic & stopped trying to be all 'positive' & let myself grieve.

    Having said all that, i was able to do that because i do have some life left still.... i can come on here, i can leave the house to be pushed around a park sometimes, i can see my friends/loved ones here for short visits, i can make myself a sandwhich most days if i sit down & can often manage to bathe myself. For those who are permanently bedbound & unable to tolerate visitors. God only knows how that is endurable, i imagine hanging hope on research is all there is for very severe sufferers.

    I've only shared this hoping it might help someone else, i'm really sorry if anyone finds it unhelpful - in that case... remember i am a total nutter:cautious: & ignore me:rolleyes:


    Edited To Add...
    Please dont misinterpret my story to mean that i think that anyone should 'learn to accept it', or whatever.
    I didnt grieve with acceptance in mind, I dont think you can 'decide' to accept it... indeed who would want to make that decision?!
    So IF there was any message at all from what i've written it would be that i hope people will be compassionate enough towards themselves to let themselves feel however they actually feel.
    I had felt tremendous pressure (from myself & others) to be 'positive' before, to be 'not giving in to it', not letting it 'get me down', and it was tyrannical. And unexpectedly what i found was that in telling all that to f*** off & letting myself descend into the hell of grief, feeling how i really felt & facing my worst fears, was that afterward the acceptance came unbidden & unexpected.

    If feeling like "f off i dont accept it & never will" feels right for you, then i applaud & support you in that.
     
    Last edited: Nov 23, 2017
  17. char47

    char47 Senior Member

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    :D well lior you just said what i was trying to say in a quarter of the time/text
    LOL :oops::rolleyes: being succinct was never my strong suit! i'm going to get that book it sounds good :)
     
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  18. Matthew Jones

    Matthew Jones Senior Member

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    The disease may not be currently curable but peoples minds can be changed about it being real. I'm sure you must have tried already but there is some scientific proof out there such as the IOM report (which maybe they should read if they haven't already).

    As for moving on, I suppose it depends on how old the person is. Being realistic is good. Theres no reason to believe there will never be a cure, that is unrealistic. Of course we will cure it eventually, the question is when. 100 years? 50 years? 20 years? 10 years? 5 years? Doesn't seem like it could happen much sooner than any of those anymore but 5 years is still possible or 10, or we could get lucky. In which case accepting that it will last a lifetime only makes sense for those who expect to have 5 or less years to live.

    What are we supposed to move onto indeed. I personally don't see the point in giving up. I prefer to accept future time batches but not endless expected illness time unless it is actually realistic. So I'll probably still be ill tomorrow, pretty much guaranteed. I can accept that. Same thing in 1 week, 1 month or 3 months (having had it almost 7 years). When there was still hope for rituximab I thought maybe until the end of 2018 I would definitely still be ill but might then get better from rituximab which I planned on paying for myself. But now that date has been bumped back further due to the study being negative for another drug to come alone and some trials to take place.

    So I now need to learn to a accept new batch of ill-time (oh fuck). 5 years seems realistic If a phase III cyclophosphamide study were to be done and were a success. But that drug has some nasty side effects so I might want more than 1 phase III or for the results to be unrealistically strongly in favour of it. So it might mean accepting 10 years of ill time as realistic.

    This I am currently struggling to accept. It's just too much loss to take in in one gulp. In which case I may bump forward my backup plan which was to try IV antibiotics in case what I have is chronic lyme after all. I have a long and somewhat complicated history with this and not suggesting anyone else should pursue this treatment at all due to lack of scientific evidence that it helps, even in those who are infected. It might make sense for me because my ME/CFS started with lyme and I once got much better for a while after a major surgery when I was on a ton of antibiotics. In which case they might make sense for me, or at least its better than having to accept 10 more years of illness.

    So that's what I'm doing. Considering the antibiotics but not yet actually decided as its expensive too.

    Accepting being ill for the rest of our lives I can respect as one way of coping with this. It's not for me though, at least I can't imagine how it could be.
     
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  19. Bander

    Bander

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    This is a painful subject to discuss, so I appreciate how thoughtful all of the responses have been. @pibee and @neweimear are asking how to move on and I don't have a great answer. I think @lior is right that the key is reaching a point of acceptance. I particularly liked the personal account from @char47. Moving on is easy to say but not always easy to do. Grieving the loss of your old self will bring up all sorts of painful emotions including anger and a strong sense of the unfairness of it all.

    I wanted to underscore something from char47's story. I don't know what a "blue tit" is, but I assume it's some kind of bird that was delightful to watch. What if that is the way to think of the place you are trying to get to? I've had similar experiences of reaching a point where I'm just able to see beauty in the world around me that I wasn't noticing before. Maybe moving on means reaching a point where you can find joy in little things like seeing a bird or getting a baby or small child to smile or finding the energy to make cookies for someone special. Maybe it means processing our grief enough that we can move out of the dark places to recognize that we are still part of the world even if we operate at a slower pace now and take it in smaller chunks than we used to.
     
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  20. pibee

    pibee

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    I always plan to be cured or much better 3 months from now. Not sure if endless positivity or just I'm naive as fukc.

    Until I tried most stuff, I don't see a point in expecting not to get better.
    So far I tried maybe 5%, and it wasnt controlled, it wouldn't end so badly if it was more informed and supervised.


    I did chronic Lyme treatment. In fact, it is highly likely I had Lyme and bartonella from early age, there are many indications, some weak proofs like tests and classic response

    In 2014 I did abx first time since early chidlhood, so I didnt take antibiotic for anything for 20 yrs.

    The response was extreme. I had massivr herxheimer reaction, I got many motor problem etc, 100 new symptoms. Be careful

    I was full of bugs. If it was controlled (think should have been given steroids to prevent so much herx), maybe would end better.
    Many non-ME symptoms disappeared, but ME got worse.
    So here I am. A wreck. :oops:
     
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