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Can Dreams Come True?

Discussion in 'General ME/CFS News' started by OnlyResting, Dec 30, 2010.

  1. OnlyResting

    OnlyResting

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    Community Project - Can You Help?

    Hello everyone :D

    I've been chewing over an idea for a while and thought I'd put it out there to see if it can fly. Rather than repeat what I've already written, please see here for the full text:

    http://onlyresting.blogspot.com/2010/12/i-have-dream-no-really.html

    What I'm looking for is two-fold. Firstly, assistance! The more the merrier. Secondly, CONSTRUCTIVE concerns/obstacles so that I can make sure I work them into the mix.

    If you think it's a lame idea or that it can't possibly happen then I probably don't need to know ;)

    Thanks so much!
     
  2. illsince1977

    illsince1977 A shadow of my former self

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    Here's my concern:
    The leading experts may be unable to present unbiased data. It may just be a human failing derived from their desire to help people, however I find it to be very irritating personally that experts may not be experts at all, but rather basing their recommendations on 1 or 2 successful anecdotal cases in their care. I have no objection to the communication of anecdotal information, however I do object to its portrayal as effective treatment rather than the experience of some tiny percent of a doctor's caseload of patients with this diagnosis. When you accumulate information into a document (of whatever form) it immediately acquires an air of authority whether intentionally or not. I think this effort would have to be populated with liberal, continuous caveats warning readers that experts should be treated with extreme scepticism, because if they had "the answer/s" there would be no need for this document.

    Am I making any sense? I hope you find that to be a constructive suggestion. Yours is a laudable goal.

    I see keeping such a document up to date as another large problem. Perhaps crowd sourcing this responsibility is the only way given the limitations and fluctuations of people's energy, but I'm afraid the solution is beyond my imagination. Anyway, it sounds eerily like a wiki to me. How do you envision this effort as different from wikipedia?
     
  3. OnlyResting

    OnlyResting

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    illsince1977,

    Your post is extremely constructive. Thank you.

    As feared, my original post received very little response. There are many potential reasons for this. Some are impossible for me to overcome but I have tried to address a few of them in this post:

    http://onlyresting.blogspot.com/2011/01/i-have-dreampart-two.html

    As you will see, I am moving back a few steps to begin with a much more definable goal. I still maintain that a wider project is possible but it probably has more chance of success if it starts smaller, grows organically, and has tangible outputs to show progress.

    I completely understand the point you make concerning 'experts'. To clarify, my focus is more geared towards 'here's what works for some people' rather than 'here is the roadmap to recovery'. You are right - it would have to be a collection of suggestions rather than a definitive guide. When we consider how little information is generally made available to the newly diagnosed though, especially here in the UK, I would argue that something of this nature is still of great value.

    In terms of keeping the document up to date, I think the solution is a hybrid of the Wiki and traditional publishing models. Whilst there is a great need for volunteers and collaboration, there also has to be some editorial control to maintain standards and respect copyright restrictions etc. I'm not at all suggesting that editorial control has to be mine as I really am not in this for my own ego's sake but it has to exist in some form, in my view.

    For anyone else reading this, I would request that you follow the instructions for getting involved within the blog post I have linked to above. Whatever happens, I will roll my sleeves up and work hard on this (alongside my own health restrictions, naturally) but the more help I can get the better.
     
  4. ukxmrv

    ukxmrv Senior Member

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    My impression was that it was not something that I would want to put my energy into and doubtful something that I would use. That doesn't mean that I don't wish you all the best. The problem is that you would need to find a lot of experienced "old time" people with ME and CFS and then harness their limited energy to make it a success.

    I've had this disease for over 25 years and tried many of the common treatments. If I was strong enough I could write the pros and cons but I am not. My energy is going into campaigning because I've tried "everything" but I am still very sick, weak and my quality of life is poor.

    I would not read a blog I (for example) on exercising using a heart rate monitor as I worked on this about 5 years ago and it had limited benefit so joining a forum to read newbies experience is not a good use of my limited strength. The word holistic makes me cringe as many of the snake oil sellers use it. Talking about activity management makes me cringe as I am in the UK and we have those ideas shoved down our throats (you may not know the long history and the awful casualties in this approach).

    It was ME patients in the 80's who worked out the basics of pacing and I lived through the time we were doing this. I also lived and participated in some of the early "experiments". I wouldn't want to read about a disparate group working this out and discussing the differences again......

    For all the decades I've been sick the method I use is to try and find patients with a similar profile to myself and this is specific on things like length of illness, onset etc. Then I try things that they try (within my limited financial means). I'm not seeing using a heart rate monitor and exercise/activity management as a priority in this group. Most have learned to "pace" without one. Many old ME patients are very jaded and scepical about "pacing and activity mangement" and don't find them useful. It's a mixed bag.

    A resource as you are describing would be for new patients or poorly informed patients. Some people can only use the internet in a limited way or have cognitive difficulties that mean they cannot read large amounts of information. It may be that talking about exercise, pacing, activities etc may be too different between patients unless you define the exact disease that you are targeting. In the UK ME/CFS is too wide a group (as you probably know).

    Before you start can I suggest that you do a "needs analysis". Define who your target audience is, what the exact disease is, and what criteria you will use for selection. It's the old garbage in/garbage out problem. Then find out from this group what it is that they would find useful to have.

    How will you know what is useful, true, etc? How will you deal with old timers who have tried everything and possibly will disagree with the newbies?

    Why do you feel that patients need information on activities with a heart rate monitor and why is a priority to you?

    When I was first ill I could possibly have done with a resource like this but it's less important now that I know what works/doesn't work for me.

    Hope this helps. It's a ramble and not intended to put a damper on your useful work.
     
  5. moonchild

    moonchild

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    i believe dreams can come true!

    why hello there onlyresting...

    as someone who has also had this a long time i wanted to chip in with what i think might be slightly different perspective perhaps. even now i find myself overwhelmed by the amount of information out there and where to begin when a new avenue to look into presents itself. the huge value that i see in your idea lies probably most in it being a bit of a 'directory'...providing some basics to be a starting point for people either newly diagnosed or looking for new information primarily (let me know if i'm off track and that wasn't what you were intending at all).

    as for 'experts' and opinions, i agree that everything has to be taken with a grain (or bagful! as someone wise once said to me) of salt - however the reality is that this is the information we have to work with. and different things work for different people. all you can do, i would think, is to show people where they might want to investigate further and perhaps give and overview before that so that they can decide if it is something they feel is worth the energy to explore more.

    this is what i had been thinking about the last day or so in regards to the idea really, that in terms of the potential 'overwhelm' factor, and also the copyright issue, you could maybe get around those by approaching it in something similar to the way i described above.

    i do think that general information such as NOT 'just pushing through' and other things that can be immensely harmful to someone newly diagnosed and vulnerable in many senses would be invaluable to include.

    hope i've made sense and i'm there with you to help in any way i can. keep dreaming...
     
  6. illsince1977

    illsince1977 A shadow of my former self

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    I see, Onlyresting, that this was your last post on PR, but it looks like you poured your energies into your personal blog. Can't help but feel that you found the reception here discouraging. I think it's just that having had this for years and years changes one's perspective.

    First you're certain that "It's only a matter of time until I'm over it" and "If only I had the right information, i.e. 'the key', I would recover", then when that doesn't happen you start to wage the acceptance vs. giving up battle, philosophically in your mind, whilst needing to conserve the minute amount of energy you have left for daily survival.

    It looks to me like you have chosen to devote your limited energies to your blog, which is understandable. I lost it in the shuffle and am just catching up on it now. I may not have enough time to read it all, depending upon how prolific you have been.

    I just wondered if you felt put off by what we said here, or if you found what you felt was a more appropriate venue for your ideas elsewhere. Do you personally read this forum for treatment ideas/information or support?
     
  7. OnlyResting

    OnlyResting

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    Hi there :)

    Sorry I wasn't aware of your comments before now. As you surmised, I haven't been around for a while.

    Hindsight is wonderful, as we all know. More importantly, experience is valuable if we keep learning from it.

    I think I was the epitome of a relatively newly-diagnosed person who had never really encountered a situation as unexplained as M.E. before. I, rather naively, felt that there must be a way to beat this through brainpower, research and determination. Being skilled at running before I learn to walk, lol, I also decided I must do something for the greater good. I must channel what energy I had into helping others.

    Looking back, this was misguided, although well-intentioned. Greater minds than mine have been wrestling with the puzzle of M.E. for many years and it now seems a little foolish to consider I was going to avoid being a statistic and get well again through my own abilities. A very wise friend of mine said to me recently that I would benefit from "stopping being a knower and becoming a learner" - this is sage counsel indeed.

    I still have an ambition to do something of real value for others. I just have to be more realistic about how I can best utilize what skills and energies I possess. But yes, my focus has had to shift a little from the community to myself. Not because I have become more ill or because I have become more selfish but because I now realise that I was avoiding dealing with my own lack of control over this illness. Coming to terms with the fact I cannot cure myself and there is no missing formula that everyone else has missed all these years is difficult psychologically.

    The past year has been a rollercoaster of emotions for me. I have sulked, I have mourned, I have raged, I have argued, I have spoken my mind when my thoughts still weren't clear and I have argued with and upset people I care about. So much of this seems tied to my own need to accept 'what is' without giving up hope for the future. I am therefore working a lot more on my spirit and considering the more philosophical approaches to dealing with illness.

    Thank you for enquiring after me, I really appreciate the thought behind it :)
     
  8. illsince1977

    illsince1977 A shadow of my former self

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    My pleasure, Thank you for responding. I am going through many of the same philosophical and emotional challenges you are. I know we are not the only ones feeling and thinking these things, so if you want to explore them here they will not go unnoticed or unappreciated. We can explore or avoid, as the case may be, dealing with our lack of control together.
     

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