This Is MS Multiple Sclerosis Knowledge & Support Community

Malden wrote:

Cece wrote:...Let me think: yes, I was complimenting Malden's English while alluding to the debate over his first posts which went from broken English to fancy English rather quickly! I had no doubts that Malden would be able to explain his position, although I had much doubt that I would agree with it. It has been suggested that Malden is Lyon posting under another name. I do not know the truth of it, nor do I care for such games.

If it's necessary I can explain, only for you Cece, because I admire your comitment to help.
My level of english depends on my current level of my RRMS. If I am remiting then I have patient to check spelling and do dictionaries and thesaruses, but if I am in relapsing stage (like I am those days) I wrote instant, no energy, no time to recheck. Apologise to you all who read my posts, I try to be understandible.


Best regards,
M.

I understand Malden. I make way more typing mistakes today than I did years ago. Suprisingly it is also in this forum where my grammatical errors were pointed out as well. Just keep in mind it is done to minimize you comments regarding CCSVI. If we are such blubbering fools how can anything we say have any value, right? You wouldn't think a forum where you go for support would be the place to make fun of a disabilty but hey I guess it happens. T Please keep your thoughts and comments coming!

Cece wrote:...Plus it showed that while he is able to explain things to us on one level, he can elevate to that highly technical and professional level too...

On either levels, someone who think that:

"...the brain to be like a barrel with two openings.
take two hose and place them in the openingsl
push water into one hose and let it drain through the other hose
by regulating input and output you can get a steady state to keep the fluid in the barrel to the same level..."

has no clue what is talking about.

M.

MrSuccess wrote:1eye - you should know by now ..... which TIMS posters ..... have absolutely zero value .

It's you two, right?

L wrote:I wish a moderator would check these people's IP addresses. Please JimmyLegs? See who is who is who..

But thanks for the link erinc. I only just saw this thread. And thanks Dr Sclafani.

Come on. I went on stupid facebook but that's not enough for you people is it?

I know you WANT to believe, but the truth is out there.

Sorry. I don't do much on Facebook. Not really in need of a forensic analysis of the people in this place. The wind is blowing, but as in a peloton, the riders can share their energy and ride against it, with the first and strongest riders taking more punishment. The order circulates, so that each can have a rest at the back. It works, and a good race is run in spite of gusts and gales.

Lyon wrote:

L wrote:I wish a moderator would check these people's IP addresses. Please JimmyLegs? See who is who is who..

But thanks for the link erinc. I only just saw this thread. And thanks Dr Sclafani.

I'm not sure of my IP address or I would gladly give it. What exactly do you think that would tell you?

If big pharma really is aware of and concerned about the theory of CCSVI and has power you accredit them, it seems they would at least have someone on staff to alter IP addresses to protect the identities of us pharma pawns/skeptics.

I don't even know who is supposed to be whom to be honest.

A moderator sees IP addresses beside everyone's posts in this forum (and forums like it). Would end speculation. To be honest I thought Malden was what is called a 'sock puppet' on some other forums. A second account. I thought that because his grasp of English fluctuated so wildly. Some of the spelling mistakes didn't seem too authentic to me either. Like someone pretending not to be proficient. But if he says it's down to MS then who am I to argue?

To be honest, I don't know why I made that post before because I don't really care whether or not Malden is a second account, Colin Rose in disguise or a genuine user. In which case, apologies Malden. Although I have a feeling you are thick skinned enough not to be offended.

But I'm not suggesting big pharma is behind anything. Interesting idea you've come up with there though Lyon, hmm..

scorpion wrote:1. 100%, 100%, 100%
2.no blind study to test against placebo effect
3.participants in his study continued to take MS therapy drugs
4. he went straight to the social media which bypassed any critical review of his research by his peers
5.to perform the "liberation" procedure at such an early stage in his research was a questionable ethical decision
6. to operate on his wife was a questionable ethical decision
7.the word "liberation" should never have been used to describe his surgery. liberation means to be free of. what a misleading term.

1. 100% is not unbelievable when given the small sample size and the reduced chance of misdiagnosed MS patients given that the group were selected.
2. People want the MS societies to fund such studies.
3. But they are, by and large, ineffective.
4. That's actually not true.
5+6. I strongly disagree, at any rate, none of those patients are complaining.
7. Neither here nor there.

1eye any scientist or even a layman like me should see that Zamboni's results were obtained through flawed science. If Zamboni's results were obtained through sound science the CCSI fanatics would not need to make ridiculous claims of pharma conspiracy, neuro conspiracy, and even infiltration by pharma reps. on certain MS blogs.
.

People claiming 'conspiracy' has absolutely no bearing on the research whatsoever. None.

The existence of CCSVI has social media to thank for the popularity it has seen over the last year. People who have very little knowledge in the vascular system continue to pop up and claim to have more insight than people who have spent ten years studying anatomy, chemistry biology, etc. in top universities. Social media should not dictate what direction science takes or we end up with what we got now which is a bunch of misinformation and paranoia. Very sad.

If it weren't for social media we wouldn't be discussing this today, true.

L wrote:In which case, apologies M. Although I have a feeling you are thick skinned enough not to be offended.

Aplogies accepted. I can't be offended by an anonymous chalk marks on a black board.

Btw, what's your opinion on brain-barrel analogy?

M.

I know I was not asked. But I would like to address the brain-barrel analogy. The statement that this is unrealistic does not come from a genuine attempt to understand. We have all seen the statements like: it's all ok, there are plenty of collateral veins, and veins are so flexible, etc. But try to understand what was meant... if the heart (sp?) cannot get new blood in fast enough because the old blood has filled the available space and is not draining out fast enough, what is so hard to understand? The vein system, as Dr. Sclafani has said, is low pressure, high volume. Perhaps it is a language barrier thing, but I don't think so.

Another negative person on this forum, a Mr. Colin Rose, also seems to think that by repeating what he has already decided is wrong, and never actually trying to understand it, somehow he is convincing everyone it is wrong. I do not share your unconsidered opinions, M'laddio.

Another negative person on this forum, a Mr. Colin Rose,

I didn't know that he posted on this forum.

L wrote:

Lyon wrote:If big pharma really is aware of and concerned about the theory of CCSVI and has power you accredit them, it seems they would at least have someone on staff to alter IP addresses to protect the identities of us pharma pawns/skeptics.

But I'm not suggesting big pharma is behind anything. Interesting idea you've come up with there though Lyon, hmm..

No, no, no. I was generalizing and that wasn't specifically aimed at you.

Malden wrote:If it's necessary I can explain, only for you Cece, because I admire your comitment to help.
My level of english depends on my current level of my RRMS. If I am remiting then I have patiece to check spelling and do dictionaries and thesaruses, but if I am in relapsing stage (like I am those days) I wrote instant, no energy, no time to recheck. Apologise to you all who read my posts, I try to be understandible.

Best regards,
M.

This is a very different way from how I was looking at it. I meant no offense.

FYI to all, in many cases a member can have a long list of IP addresses associated with their TIMS usage... myself included!

jimmylegs wrote:FYI to all, in many cases a member can have a long list of IP addresses associated with their TIMS usage... myself included!

True, true. But what you look for is different accounts using the same IP address, especially within close proximity. It can happen without it being the same person (e.g. two users using the same public WIFI), but not likely.

scorpion wrote: 1. 100%, 100%, 100%
2.no blind study to test against placebo effect

Dr. Sclafani has addressed this in his thread. He believes that it is unethical to sedate people to the extent that would be necessary such that they could not tell whether or not they were actually treated. Many people treated for CCSVI have reported that it was obvious when the balloon was being inflated. Sedation would expose people to unnecessary risk. Moreover, simply inserting a catheter into the jugular or azygous vein may clear out some obstruction. There are many types of blockages including a septum, a thin membrane blocking the vein, which could be cleared via a catheter insertion. Moreover, Zamboni's paper states that the doctors evaluating the patients were blinded to an individuals MS status.

3.participants in his study continued to take MS therapy drugs

Pharmaceutical companies do this all the time. Remember Avonex + Tysabri? Copaxone with Revimmune? Copaxone with Novantrone? Anyways, MS/CCSVI may be a disease of chronic immune activation and continuation of DMDs may be prudent to help correct the chronically activated immune system.

4. he went straight to the social media which bypassed any critical review of his research by his peers

False. Zamboni published in peer reviewed science journals well before the rest of us found out about it.

5.to perform the "liberation" procedure at such an early stage in his research was a questionable ethical decision

Really? How else would you suggest he test his hypothesis that restricted blood flow may be a contributing factor to the disease of MS?

6. to operate on his wife was a questionable ethical decision

This has been discussed elsewhere on the forums here at ThisIsMS. Zamboni did not operate on his own wife. Moreover, it may be the case that it's unlikely that he's personally operated on anyone recently. Have you watched the videos of his interviews? If you were paying attention, then you would have noticed something unusual about his hands. In one video he handles a computer mouse as though he were wearing a ski mitten. In another, he moves his hand over to rest it down on his other arm and it appears to be more of a flop type of motion. If you've read about Zamboni, then you may have discovered that he has an unknown (at least to me) neurological condition. Clearly, this seems to be affecting his hands (or at least one of them). Again, I doubt that he operated on his own wife. However, he may have directed the operation. I see no ethical problems with this if that were the case.

7.the word "liberation" should never have been used to describe his surgery. liberation means to be free of. what a misleading term.

The use of the word liberation by Zamboni is meant that his procedure liberates the blood flow. As far as I know, it has nothing to do with "liberating people from MS." I believe that this is common misunderstanding. Even Dr. Andrews, an IR in support of CCSVI treatment and research, makes this error in his video.

NHE
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