This Is MS Multiple Sclerosis Knowledge & Support Community

scorpion wrote:

Cece wrote:
I'm done speculating on the motives of why someone would be gleeful if negative CCSVI news is posted, I stand by my assertion that it comes across that way sometimes.

Because what has been created is an us versus them mentality. You guys either want us to fully except what you are saying or we are against you and CCSVI. That was established from the beginning. Do you think anyone really cares about personal attacks on this board? No one spoke up when CCVSI hubby ridiculed Concern's mom who has MS. It is no longer about supporting each other but instead it depends on where you stand on the CCSVI issue that matters. The hell MS has put us through and no one even stood up for concern's mom dignity because concerned is "one of them".

Let's change that.

cece - you are a valuable and respected TIMS contributor.

seriously , you need to think about what and WHO you are wasting your time with .

Mr. Success

This sort of discussion and accusatory talk is exactly why I'm going back to lurking.
I have MS. I get very badly affected by stress and it makes my hands and feet go cold and shaky when I read all this exchanges.

Sorry, but this isn't a good forum to discuss anything. Anyone who doesn't yet understand CCSVI or gain benefits, or has to wait because they are very poor, or the Gods forbid, is doing well on their regime, is automatically regarded by some very aggressive posters, as one of 'them'.

Cece, I didn't see your emoticon, but even then your question was distressing.
It used to be a good place to discuss MS at the next level up from 'what do I do now?' posts on other boards.
Joan, thanks for your input. I agree. I have no chance of testing or treatment and yet, I'm really interested to see how this treatment works and what happens when it doesn't.

I just can't play at this level. It's too stressful.

I'm just going to make one more point.
Those who haven't done well after venoplasty and who post on this, really don't seem welcome. I don't understand this at all.
Good discussion involves addressing the failures and the successes and being free to talk about them.
CCSVI isn't a religion.
I'm the only person in my village with a good internet connection - dialup.
Eugh, why am I bothering trying to explain?
It's not as though anyone will believe me anyway.

So that's it. Until this board changes for the better - from both sides, then I'm lurking.

MrSuccess wrote:cece - you are a valuable and respected TIMS contributor.

seriously , you need to think about what and WHO you are wasting your time with .

Mr. Success

jgkarob wrote:This sort of discussion and accusatory talk is exactly why I'm going back to lurking.
I have MS. I get very badly affected by stress and it makes my hands and feet go cold and shaky when I read all this exchanges.

Sorry, but this isn't a good forum to discuss anything. Anyone who doesn't yet understand CCSVI or gain benefits, or has to wait because they are very poor, or the Gods forbid, is doing well on their regime, is automatically regarded by some very aggressive posters, as one of 'them'.

Cece, I didn't see your emoticon, but even then your question was distressing.
It used to be a good place to discuss MS at the next level up from 'what do I do now?' posts on other boards.
Joan, thanks for your input. I agree. I have no chance of testing or treatment and yet, I'm really interested to see how this treatment works and what happens when it doesn't.

I just can't play at this level. It's too stressful.

I'm just going to make one more point.
Those who haven't done well after venoplasty and who post on this, really don't seem welcome. I don't understand this at all.
Good discussion involves addressing the failures and the successes and being free to talk about them.
CCSVI isn't a religion.
I'm the only person in my village with a good internet connection - dialup.
Eugh, why am I bothering trying to explain?
It's not as though anyone will believe me anyway.

So that's it. Until this board changes for the better - from both sides, then I'm lurking.

MrSuccess wrote:cece - you are a valuable and respected TIMS contributor.

seriously , you need to think about what and WHO you are wasting your time with .

Mr. Success

jgkarob, Thank you so much for your post. You captured how many feel and one of the reasons why I've stopped posting by 98%. Most recently, I was mocked by a [edit] for being "thin skinned," which pretty much explains the culture of posting at TIMS.

jgkarob wrote: I'm the only person in my village with a good internet connection - dialup

Mi abuelos eran de Cortegada de Baños y de Valongo.

No te vayas, se pueden tener discusiones excelentes en este foro.

Un abrazo!

Moitas grazas, o muchisimas gracias, hay muchos gallegos en Argentina.
Me encanta mi vida aqui. ¡Galicia para siempre¡

fernando wrote:

jgkarob wrote: I'm the only person in my village with a good internet connection - dialup

Mi abuelos eran de Cortegada de Baños y de Valongo.

No te vayas, se pueden tener discusiones excelentes en este foro.

Un abrazo!

;)

I sword I'd not post in this thread but it's against my fundamental beliefs:

Good discussion involves addressing the failures and the successes and being free to talk about them,

I concur 100%

Algis wrote:I sword I'd not post in this thread but it's against my fundamental beliefs:

Good discussion involves addressing the failures and the successes and being free to talk about them,

I concur 100%

I don't know if you want an evil "skeptic" agreeing with you but yep, exactly!

I know this for a fact. Our Marketing, and Product Development folks go on all of those types of websites (our customer's websites) ... and do just that. The same goes for our competitors (as we've hired away people from them who have told us they do that). And I don't work for a small company either.

It even has a name of its own.


http://en.wikipedia.org/wiki/Astroturfing

jgkarob wrote:Moitas grazas, o muchisimas gracias, hay muchos gallegos en Argentina.
Me encanta mi vida aqui. ¡Galicia para siempre¡

fernando wrote:

jgkarob wrote: I'm the only person in my village with a good internet connection - dialup

Mi abuelos eran de Cortegada de Baños y de Valongo.

No te vayas, se pueden tener discusiones excelentes en este foro.

Un abrazo!

Estuve por allí cuando tenía 9 años. Sólo unos tres meses. Recuerdo como jugaba en el orreo del hermando de mi abuela, de los cerdos debajo de la casa, los viñedos en los montes, las fiestas en el pueblo...

Muy hermosa es Galicia.

Pero me refería a que no te vayas del foro. Hay mucha discusión que a veces se vuelve un poco tensa, pero es bueno participar y preguntar.

Un abrazo galego.

CCSVIhusband wrote:

Lyon wrote:Respectfully that seem REALLY, REALLY paranoid cece.

Big pharma really is inept to pay to have people infiltrate MS websites when anyone not enthralled with CCSVI can see that the theory of CCSVI has yet to pose a substantial threat to them and seems to be losing momentum.......or are we to believe that the only honest people are the ones who post positive results and those who post non or negative are automatically suspect as pharma plants?

I don't mean to give away any trade secrets or whatnot ... but this is REAL. IT HAPPENS.

Did you ever go on like Overstock.com and read the user reviews? Or say Wal-Mart.com and read user reviews?

Did you know A LOT of those user - especially very negative, or very positive - reviews are posted by people from either the company that makes the product, or a rival company?

I know this for a fact. Our Marketing, and Product Development folks go on all of those types of websites (our customer's websites) ... and do just that. The same goes for our competitors (as we've hired away people from them who have told us they do that). And I don't work for a small company either.

We love this product (our product) it does x, y and z - and then cleans my cat litter too ... or their product caused me a rash (our competitor's product) and gives old ladies warts and kicks dogs while it's at it ... (OK maybe the reviews aren't that silly, but you get the point)

You don't think drug companies are doing the same? ... get real.

When there are big bucks involved (and make no mistake there are HUGE bucks involved here) ... there's no limit to what people will do.

I'm certain it happens on this website, other CCSVI/MS sites ... and beyond.

I just think everyone should be aware, from someone in a corporate position of (somewhat) high up power who has witnessed it first hand (and even done it myself) ... IT happens.

I wanted to follow-up on this point with one more I thought of after writing this.

Did you know ... BP - during the oil disaster in the Gulf of Mexico this summer ... contracted with basically EVERY environmental professor at any college in the country ... just BS consulting/research work, so that those professors then couldn't testify against them in a court if there were any lawsuits as a result.

Basically they paid people to do nothing important research, to save their own skins later.

(Think drug companies, giving doctors money for "research" ...).

It happens every day in corporate America ... no denying it. No use fighting it ...

Make no mistake folks ... people pose as something they're not each and every day ...

I'm just saying, we can't act surprised this kind of stuff happens, when we know it happens.

Call it paranoid (but it's not paranoid when I can give you the names of people doing it - and they're not the same names listed as doing the reviews - anyone good at computer hacking ... just check the IP addresses and see where they are from), but go ahead and buy that product from Wal-Mart that gets a bad review ... truth is you'll probably love it (99% of consumers will never fill out a survey about the product they purchase ... did you know that? So who IS filling all of them out? Think about it.)

¿Que provincia?
Disculpa me, soy Inglesa y llegamos a Galicia en año 2008.
Estoy sentido abajo, en la habitación vieja de las vacas. Tenemos electricidad in 3 cuartos solo, (una falta de dinero..gravissimo).
El aire, la clima, los pueblos y mi vecinos (igual edad como yo) hicieron salva mi espiritu.
Este mes, es el mes de las matanzas. ¡porca miseria!
Vivimos un poco baja de las montañas, sin viñedos, pero hay muchas patatas...
Gracias por tú mensaje, y disculpa la falta de español.
Abrazos de Galiza,
y gracias...


Drat - this is NOT lurking....fail!


"Pero me refería a que no te vayas del foro. Hay mucha discusión que a veces se vuelve un poco tensa, pero es bueno participar y preguntar"
¡Si!!!!! bikos...

fernando wrote:

jgkarob wrote:Moitas grazas, o muchisimas gracias, hay muchos gallegos en Argentina.
Me encanta mi vida aqui. ¡Galicia para siempre¡

fernando wrote:
Mi abuelos eran de Cortegada de Baños y de Valongo.

No te vayas, se pueden tener discusiones excelentes en este foro.

Un abrazo!

Estuve por allí cuando tenía 9 años. Sólo unos tres meses. Recuerdo como jugaba en el orreo del hermando de mi abuela, de los cerdos debajo de la casa, los viñedos en los montes, las fiestas en el pueblo...

Muy hermosa es Galicia.

Pero me refería a que no te vayas del foro. Hay mucha discusión que a veces se vuelve un poco tensa, pero es bueno participar y preguntar.

Un abrazo galego.

Cece wrote:
I'm done speculating on the motives of why someone would be gleeful if negative CCSVI news is posted, I stand by my assertion that it comes across that way sometimes.

I don't think that we're gleeful when negative news about CCSVI is posted because it's down on CCSVI per se, but rather, it's proof par excellence that the attacks some posters make on us for not being faithful enough are completely ungrounded.

MrSuccess wrote:cece - you are a valuable and respected TIMS contributor.

seriously , you need to think about what and WHO you are wasting your time with .

Mr. Success

MrSuccess, you have had some mud slung at you back in the early days, for being a provocateur ! I have had stones tossed my way for over-posting in Dr. Sclafani's thread (well, I was guilty of it...) and for other things. We are not spotless. It would be nice if we were all authentic. CCSVIhusband, yes, the other day ... posted with perfect spelling and punctuation and went back and edited in errors (adding a 'g' to fog and an 's' to our).