Last reply 4 years ago
Outside the Box, Where I Live

Okay kids, BillyB is back and I have got an absolute ripper for you. Remain calm and brace yourself.

Now bear with me because I just had this little lighting strike and so I’m still making most of it up as I go. When am I not flying by the seat of my pants, I prefer it that way.

Do you know what I see when I look at this site on the screen in front of me? Heaps of ****. Heaps of good ****.

What I really see is about what 6-7 thousand (I don’t know how to check total members while typing this) real, decent, honest (for the most part) people who come from various countries across the globe who either have MS, are waiting for a diagnosis confirmation (limbo) or some direct connection with it in the day to day, carers, family members, partners, children, and so on. I see a ****load of people and going by the sample I have had communications with as the average, most of us just want to seek support and give support and just have a group like this that can be relied on for a place to turn with nice people when you really need it. Also for seeking factual or more practical advice based on others first-hand experience and for advice about where to source official information…. blah blah we all know why we’re here, I think and its good.

The thing that keep’s tugging on the back of my shirt is it just seems to me we’re wasting potential here somehow. My funny brain thinks:

Lots of MS people, good people, lots of stories, lots of information, first hand after the fact information, not ‘lab’ information, diverse people with good intentions and a common adversary (MS); people with the ability, a common cause and a medium for communicating instantly and freely and to share information which we could utilize as a tool to fight back. I saying that rather than just floating along and only helping each other to manage symptoms (we have our doctors for that) we should be putting this opportunity we have together to greater task and working together to compile a massive collection of as many of our personal accounts of having MS as we can. Then we could collate, organize, index, consider, analyze and try to draw conclusions from that information and analysis and look for patterns or ‘coincidences’, themes for ourselves. Why would we do this? Well because we can, and because none of us deserve this, and because it could be extremely interesting and if you want to live a little we could stumble across something groundbreaking. I mean don’t get me wrong, chances of that a slim to **** all, actually less than that. But for us at the very least, for the people involved it could give us invaluable insights. Or even just something to do and contribute to that made you feel good.

Imagine if we were doing it and every other person with MS on other sites like this one we’re doing the same with the plan to consolidate it all into a MS KnowledgeBase (MSKBase) Now copyright to me (haha). Actually just to take full advantage of this little tangent, why the hell isn’t this exact sort of activity taking place openly and honestly right now across the globe, conducted by governments and drug companies and funded researchers and insurers? Surely it makes sense only to have a global approach of gathering a full cache of information on every MS patients’ data, load that shit into a supercomputer and bang, you’d have a cure by lunchtime. Crazy right? Mmmmhmmmm. Truth be known they’ve probably already done exactly this and just not told anyone. A cure is no good for business. A cure doesn’t get you research grants or repeat business? Anyway I digress….

Imagine for example, now you don’t have to give any extra personal information to people, anyone, than what you already put on this site for public viewing, the stuff you choose. It can be done with just that AND whatever other noteworthy experiences or factual data you can provide in relation to your experience of having MS….. such as…. when were you diagnosed, what age, where were you living, what were you eating, what sort of MS, any stressful or traumatic events leading up to diagnosis (credit to Kitty on the last, she asked me that yesterday and the answer was YES, easy), number of relapses, types of symptoms and any notable triggers, rate of progression…… I mean I could sit here all day and night and keep asking common sense non-intrusive questions that with not even half of us, would build a story that was very telling and possibly valuable to everyone involved.

You see this is what I think is wrong with the world. 6-7 thousand smart, decent, good, empathetic people who can all talk to each other at once and share info who all have the same disease in at least one form or another (a common cause) and with the motivation of possibly helping our very lives, we still don’t think to or can’t or can’t be bothered even if we thought of it; coming together, coordinating ourselves and pulling something like this together for our own benefit, to help ourselves individually and the group as a whole. Why? No I said WHY? You’d rather let someone else do it for you and tell you the results but never prove or substantiate those results in any way? You don’t think we’re good enough? You don’t think we’re capable of helping ourselves, organizing ourselves, doing important things for ourselves? You prefer to just lie down and die and do nothing? Hope is good but it doesn’t win you wars it just see’s you through a battle. Seriously why would we choose not to think this way?

You don’t want MS right? Well there’s not much I can do about that for you other than to say let’s bloody do something I mean common FFS? The last time someone was bringing me something important, life-saving important, and it’d been 30 years and they hadn’t shown up yet do you know what I did? I went to find them to give them what for after the first half an hour, 3 decades ago!

Anyone, please, help me out over here?

The world could have more of me and this type of **** like I’m frothing at the mouth about now if we just all acted and worked smarter which means together.
Logistically and practically what I’m proposing is not even hard. The thing you’re staring at will do 90% of the work. It would be possible to set up an additional tab in the left margin of the home page “MSKBase”. Behind that tab sits a custom designed web-form (not complicated, dragging a few squares around a screen and giving them titles and drop down or text boxes) that any member who chooses to can go in and create a Kbase entry which is essentially a electronic appendix to their profile and they fill in their own data in the relevant boxes. As much or as little as you want, go back later and do more, go back and erase whatever you choose or everything at any time, just like your profile. Every persons’ information is still their own, no one is making money here (what would anyone do with it anyway it’s worth sweet FA). We would be creating and electronic scrapbook for all of us.

Nominate a few volunteers, additional volunteers who want to do it, to then quality control check that data just for uniform formatting and style, import it all into a database and alakazam! You have yourself a very powerful and informative reporting tool on real MS data for thousands of people. I know I know I know, crazy. You could just about set something like this up through one of those web blogger sites where you can create your own webpage these days. There would be 50 ways to do it if not on this site.

But fact is I know this won’t take off, probably not in any way, and that’s the sad part. Either it wouldn’t be allowed for some sort of liability risk which is fair enough but not in the sense that such stupid liability exists; or complacency and conditioning leaves us right where we are, doing nothing even for ourselves. So knowing that before I even started writing this why did I keep writing it? Just to show you all that if not to actually do it then how it is possible to think and act differently even if just a tiny bit rubs off and sinks in and is used by any of us later on, incorporated into you thinking even just to the slightest degree, then we are already on the way back up by the exact same degree.
Help me, help you, help me……
I’m very tired, I’m going to sleep for a little bit.

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graham100
4 years ago

Wow, that’s the 1st book iv read for ages, lol. Must admit I had some nasty shocking things happen that shook my world about 9yrs ago, and wondered if it could have contributed to my MS kicking in 4yrs ago?? But people don’t want to talk about there really personal experiences, plus thousands of people that have had bad stuff in there life haven’t got ms?? So back to drawing board. Frustrating yes, great seeing jack Osborn on breakfast tv today looking really good running around promoting Disney world,, only problem is, although its great to see him looking like there’s nothing wrong, it can also make people think, why can’t you work? I saw jack, he’s got ms, it’s not that bad??? Educating people is key to helping MSers,, it affects everyone so differently yet so similar, if you know what I mean, anyway good luck.


tabbycat
4 years ago

I like the idea of compling experiences anonomously , if that information could be used to really understand this odd condition. Maybe shiftms could do be the platform to do it.
However, it would be a shame to loose the personal touch of friends helping and being a shoulder to cry on sometimes, that makes this place so special.


reddivine
4 years ago

Well over here in the UK. someone(s) already kind of doing that. Its called the MS register
http://www.ukmsregister.org/Portal/Home

also every 2 years theres a whopping great event MS LIFE bringing together loads of folks including shift, researchers, seminars, info and alllllllllllll kinds of fun and stuff.

http://www.msaustralia.org.au/

Scroll down to SHARE YOUR STORY and get on it Billy!


stumbler
4 years ago

A very eloquent proposal, @BillyBonza, and well presented.

Unfortunately, I think that Shift may be hard-pressed to resource such a development, although I’d have to leave it with the site owners to see whether there is room to consider fitting this into the development schedule.

I do tend to agree with @reddivine that there are already similar initiatives in place. There’s a UK-based one, as linked above, and there’s an international effort that seems to have originated not a stone’s throw away from you :-

http://www.mh.org.au/msbase/w1/i1001371/

But, it’s good to have your views, and literary talent, on the forum. 😀


kitty
4 years ago

@BillyBonza – I agree this is a good idea and Ive had the same idea myself shortly after diagnosis due to feeling unsatisfied with what was available (MS Support through MS Australia etc). We do need to be able to vent and share annonymously (after all its freedom of speech) and if there is away to set this up we should do it.

The problem is “big brother”, there are national and international MS sites on FB, then theres Shift.MS and no doubt other sites but theyre all monitored. Can we really be open and honest with our experiences, opinions, etc without fear of being removed, blocked, sued etc.

Ok at the risk of being removed myself for stating my opinion here goes nothing….Ask yourself whats in it for every association, medical professional etc…Il give you and example of my experience…Ive seen 3 specialists and not one has ever mentioned any kind of alternative therapy or alternative medicine that can help or improve MS Symptoms etc…theyre aware of same but choose only to promote the pharmaceuticals. Isnt that a breach of duty of care in itself. Im not saying Im against pharmaceuticals, they have there place… but why not tell patients all info and let them decide and then support their decision. Not one of my specialists told me about a book I think all specialists should be suggesting to their patients “Overcoming Multiple Sclerosis” in addition to the pamphlets they provide about pharmaceuticals available. Why, why why..?

Well I have my own views and beliefs on why but they could be viewed controversial so Ill keep them to myself.


Anonymous
4 years ago

What literary talent? I just throw this **** down literally as it comes to me. I smoked 2 spliffs before that came to me, or out of me? And I was literally falling asleep in my chair as I came to the end actually that’s the only reason I stopped writing.


stumbler
4 years ago

@kitty , the only house rules can be found at the bottom of each page. And, they’re not that onerous as we like to allow free speech, as long as it doesn’t leave us open to legal procedures for libel or defamation of character, etc.

As far as possible, the forum is self-moderating. If you, the members are OK with it, then as long as it’s legal, then so are we.

Unfortunately, it’s money that makes our little world go round. The medical profession will only recommend a treatment that has been through proper clinical trials to document efficacy. They won’t recommend anything which only has anecdotal evidence, for fear of getting their asses sued off, if it doesn’t work!

That’s why we have social networking, so that we can share ideas and experiences, with no guarantees and negligible liability.

We can help each other where the medical professionals have their hands tied.

And, @BillyBonza, you have a way with words. I’ve read every one of them. You type it as you would say it. And, that’s a skill in itself.


Anonymous
4 years ago

thanks stumbler that’s a nice compliment


kitty
4 years ago

@stumbler – thank you for the info, Im aware of your first paragraph and how the legal system works.

Im further aware of the medical professions restrictions however, I dont see why a medical professional cant say something along the lines of….some patients have chosen alternative medicines or therapies such as …..however, I dont recommend same… and do the same for reference books etc..

Thereby giving a patient more options and covering themselves at the same time. I know I asked about alternate medicines etc in addition to what pharmaceuticals were available to me…I wanted to know about any and all that could help me..Im sure Im not alone.

Trust me there assess are well covered…


Anonymous
4 years ago

Graham Ive got NFI what your talking about, you missed the point entirely. if the ‘data’ isn’t simple and directly MS related why would i give a ****? The purpose is an MS occurrences and causes reporting tool. And as far as people not wanting to share their contributions, that was the whole underlying purpose for writing any of that, to make anyone who cares to see, see, that type of unnecissarily embarrassed, egotistical withdrawn behaviour is why we as humans cant and don’t evolve further. You know unity, world peace, care for your fellow man, group contribution for the common good, you know all that insanity. And for what cos you don’t want someone to know you bowel or bladder doesn’t work so crash hot any more or because the right side of your body is numb? Gimme a break


Anonymous
4 years ago

I’m just a thought provoker, and ideas man, someone who likes and needs the truth even if it is an acid bath I require it for my good conscience. MS will kill you in the end but the truth can set you free


graham100
4 years ago

Sorry I now have NFI what you was reading as I was agreeing with you, and MS has never actually been the course of anyone dying, it’s the drugs you take that courses the shorter life, chill man, don’t be so aggressive that will make you sad,, then you could become an AH. If I misunderstood your aggression ignore this, if I didn’t. Up yours.


stumbler
4 years ago

@graham100 , @BillyBonza , c’mon guys, call it a misunderstanding and let’s move on. There’s no need for anything personal….. 🙄


graham100
4 years ago

Sorry stumbler the provoker provoked, won’t happen again.


Anonymous
4 years ago

Of course my apologies to shift and graham.
I did get a little snappy. No offe.nc was directly intended.
Again my apologies.
Sincerely,

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