The dangers of false hope ?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby MrSuccess » Tue Mar 02, 2010 11:50 pm

One must guard carefully against false hope. In CCSVI - MS as in all other conditions and diseases - a percentage of sufferers are children.

It would be just awful to give these kids hope ....then have it taken away.

Therefore , we adults must procede carefully . And choose our words carefully.

Dr. Zamboni has never used the word -cure-.

What Dr. Zamboni has done is present to the world a new medical condition that seems to respond to a simple medical procedure . And has asked that other scientists replicate his discovery.

Some are in the process of doing this. And getting various results. :!:

Everyday here at TIMS we continue to gather and share the news of the great work of these incredible pioneer scientists.

We are making gradual inroads into solving MS. But still no actual cure.

It is my gut instinct that we are nearing a tipping point in CCSVI-MS treatment . Just look how things were 12 months ago. And how they are now. And even better .....what will unfold in one year.

So far ...I've read many objections ....but no science to back it up . :evil:








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Postby AndrewKFletcher » Wed Mar 03, 2010 1:57 am

ozarkcanoer wrote:Poor Galileo.... How many centuries did it take for the powers to be to say that he was right ?? I have every respect for many scientific researchers. But the system we have today of funding and publishing and bringing the results of that science to market is deeply flawed. When educated doctors, who are just human beings like you or I, don't just question ideas based on the science or lack thereof, but make patronizing statements about hoaxes and false hopes, then they are just a bunch of windbags. We KNOW that for CCSVI to be accepted or rejected by the scientific community it needs to be researched. That's what we want. That's what Zamboni wants. The problem is, and I know this first hand, academic research is NOT the impartial genius pondering the mysteries of the universe, but real people with real bias and human flaws. Before there is a scientific theory, there is an idea. CCSVI is a GOOD idea ! We are just trying to move the ponderous and bureaucratic scientific and medical world to look closely at CCSVI and it looks to me like it is working. Now that is HOPE !


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Postby costumenastional » Wed Mar 03, 2010 6:04 am

I really dont know if what follows counts for false hope or not and to be honest, i dont care:

the fact that chronic MS patients and their advocates are here, helping and supporting each other, feeling strong one way or another, simply gives fairly newly diagnosed people like me the strength to go on.

If suffering is what God wants for me, i guess i can only take it as much as possible. At least, i know i am not alone, i know that i belong to a cast of VERY special, sensitive and extremely intelligent people who are tied together and truly care for each other's well being.

Every time i read your posts i get emotional, i cry, i think and yes: I HOPE.

I feel like saying thank you, to all of you who never gave up, for being who you are and i assure you: if it wasnt for all of you, my life would be much, much worse.

You are my family and you will always be, even if we are cured someday.

What you have all helped to do here is what i think hope really stands for.
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Postby sbr487 » Wed Mar 03, 2010 7:11 am

Costume, thats a very mature observation from you ...

On the health spectrun, each on of us had to fall in one band or the other. We happen to fall in MS band, some fall in even more worse disease band.

I still have my "frustrated days" and just hate about everything ... its natural to vent out once in a while ...
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Postby costumenastional » Wed Mar 03, 2010 7:33 am

Venting is more than appropriate in our case.

I 'd choose Zamponi's false hope over "their" hope anytime.

It's funny how priorities change. Nowadays, all i care is for "them" to be wrong, to loose their "clients" to feel desperate themselves for a change.

Keep the hope alive i say, or die.
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Postby scorpion » Wed Mar 03, 2010 7:50 am

I agree with everyone that hope is an essential part of dealing with this disease. It may be that someone like Zamboni, who thinks outside the box, may one day solve the MS puzzle. Hope can also blind us and make us accept claims and statements that are half truths or outright false becuase sometimes our hopes are better then reality. In my opinion Zamboni's initial results are a great example of how hope can blind people to logic and critical thinking. I agree that Zamboni never claimed that CCSVI was a cure for MS or that it even was the cause of MS but people's hope for a cure has morphed it into one or both of these things. I should think that skeptics on this board should be welcome. After all if Zamboni would not have been a skeptic himself we would not have the current studies taking place that are looking to see if there is an association between CCSVI and MS and if so what role CCSVI plays in the disease process(chicken or the egg). Sorry if I rambling. Hope everyone has a good one.
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Postby costumenastional » Wed Mar 03, 2010 7:55 am

I ll have to agree.
But lets wait a bit more until it is proven that ccsvi is not a cure at least for some of us.
Who knows...
Neuros dont, thats for sure. But for some reason they act like they do.
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Postby ollia » Wed Mar 03, 2010 7:58 am

costumenastional wrote:
"the fact that chronic MS patients and their advocates are here, helping and supporting each other, feeling strong one way or another, simply gives fairly newly diagnosed people like me the strength to go on.

If suffering is what God wants for me, i guess i can only take it as much as possible. At least, i know i am not alone, i know that i belong to a cast of VERY special, sensitive and extremely intelligent people who are tied together and truly care for each other's well being.

Every time i read your posts i get emotional, i cry, i think and yes: I HOPE."

Costume,
agree with those nice words of yours.
It is so hard,most of the time...
Thank you.
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Postby ozarkcanoer » Wed Mar 03, 2010 8:04 am

I don't think we are against skeptics here. I know that the CCSVI idea is in it's infancy. I'm not ready to go to Poland or India for the procedure. But I am willing to give the BNAC study support because they are trying to determine if CCSVI has real scientific validity or not. A huge piece of me wonders if and when the whole puzzle of MS will truly be solved.

The original intent of this thread was : is CCSVI false hope ? What does it mean to have false hope ? Hope is not a scientific matter, it's a state of the mind. Will I be devastated if next month some smart scientist reasonably demonstrates that CCSVI is in no way related to MS ? I will be disappointed, no doubt about it. But currently I have hope... I am a skeptic but I have hope.

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Postby annad » Wed Mar 03, 2010 8:16 am

Costumenational,
You spoke so eloquently and from your heart! I think most of us feel that way. At least I know, I do. At least we don't have to go through anything in a vacuum anymore thanks to these type of forums.
No one is alone.
;)
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Postby suze » Wed Mar 03, 2010 5:07 pm

Actually, according to the dictionary, hope is 'a feeling of desire for something and confidence in the possibility of its fulfulment'. So I don't reckon there's much difference between false hope and real hope. If it serves the purpose of allowing people with ms to stay positive..... We all know there's a possibility we'll be disappointed and the best possibility for years that there'll be a solution to all this suffering. We have HOPE!!!!!
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Postby Lyon » Wed Mar 03, 2010 5:32 pm

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Last edited by Lyon on Mon Nov 21, 2011 6:13 pm, edited 2 times in total.
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Postby ozarkcanoer » Wed Mar 03, 2010 5:33 pm

suze !!! I like your attitude and intelligence. Thanks for your thoughtful post. "Ya gotta have hope... miles and miles and miles of hope !!!"

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Postby suze » Wed Mar 03, 2010 7:21 pm

I am mostly kind of cheery and trying to be positive, seeing the good things, not dwelling on the bad etc etc. You all would know.
But recently as a result of all this hope, I've allowed myself to imagine being able to walk anywhere etc. This has caused me to let down my guard and get pissed off about my ms, and I've had to mentally pull myself back because that's not a good place to be.
So there's a downside to allowing oneself to have hope, but I reckon it's a whole lot better than having no hope. And I don't have to look far to see people in a far worse position with only fleeting hope.
Give me hope anyday!!!!!!!!!!!!
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Postby suze » Wed Mar 03, 2010 11:46 pm

Actually I'm still thinking about hope.
It's only with hindsight that hope can be false or real, so when we are looking forward, false hope can't exist. Only hope can exist. Maybe this doesn't make sense.

Anyway........it's not only pwms who need hope, everyone needs it. We can't really exist without it!
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