The dangers of false hope ?

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

Postby sbr487 » Thu Mar 04, 2010 12:58 am

Slightly off topic but I have a question to CCSVI blasters -

If CCSVI is indeed a hoax why do you worry so much about it. Its going to fail anyway.

If CCSVI is indeed a hoax the real litmus test by people will fail.

Why do you take so much pain and gang up to preempt any +ve news coming out?

If I were a professional and if some mad scientist makes a claim that I believe is junk, I would not even consider responding or waste time in thinking about it.

Now the fact that all this is not happening lends more credibility to CCSVI (who would waste time in a hoax theory) ...
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Postby scorpion » Thu Mar 04, 2010 6:04 am

Hey sbr487. Please reference any posts that state CCSVI is a hoax. I have also personally not read any posts where people are "blasting" the CCSVI theory. Posing questions and maybe some skepticism yes but hopefully no blasters.
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Postby sbr487 » Thu Mar 04, 2010 6:40 am

Having read my post I was certain that this would be the response.
I was really referring to the critics such as neuros, Colin Rose etc not fellow thisisms'ers
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Postby AndrewKFletcher » Thu Mar 04, 2010 7:16 am

scorpion wrote:Hey sbr487. Please reference any posts that state CCSVI is a hoax. I have also personally not read any posts where people are "blasting" the CCSVI theory. Posing questions and maybe some skepticism yes but hopefully no blasters.


This site appears to be fairly biased towards anything other than an affective treatment, cause or cure.

There are a lot of vested interests at stake, so don't get disheartened reading the posts on this link. Read between the lines.

http://medicalmyths.wordpress.com/2009/ ... i-surreal/
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Postby costumenastional » Thu Mar 04, 2010 7:22 am

The unexplainable Colin Rose phenomenon...

I will never understand why a cardiologist keeps typing against CCSVI all day long. Check this out too:

http://www.flickr.com/photos/73416633@N00/4314787610/

Same guy.

However, i really dont think that money has to do anything in his case.
He is either a loony or a prophet since no one on earth at the moment knows what an even tiny blood reflux inside the CNS can trigger.
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Postby mormiles » Thu Mar 04, 2010 8:05 am

Hope is indispensable in surviving the daily grind of MS...whether it's reasonable hope or false hope. Hoping any at all may seem foolish to those on the outside, but to the outsiders I offer this argument:

1. Medical discoveries and advances are happening every day.
2. MS is not excluded from the illnesses targeted by researchers.
3. Sooner or later, a cure or meaningful treatment for MS will be found.
4. Who is to say that the next reasonable medical treatment is not IT ?
5. If the alternative to NOT trying the next reasonable medical treatment
is MS progression, only hopelessness would prevent an MSer from
seeking the new treatment.
6. Again, sooner or later, the next big thing will be the real thing. We can't know what will be until we arrive there. Only hope will deliver us when the right time comes.
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby ozarkcanoer » Thu Mar 04, 2010 2:24 pm

Thank you Joyce !

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Postby sbr487 » Thu Mar 04, 2010 11:33 pm

And remember that biggest surprises come from least expected quarters.
It is important to keep an open mind and take an objective view and not blur judgement based on irrelevant factors ...
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Postby nicko » Fri Mar 05, 2010 3:02 am

sbr487 wrote:Slightly off topic but I have a question to CCSVI blasters -

If CCSVI is indeed a hoax why do you worry so much about it. Its going to fail anyway.

If CCSVI is indeed a hoax the real litmus test by people will fail.

Why do you take so much pain and gang up to preempt any +ve news coming out?

If I were a professional and if some mad scientist makes a claim that I believe is junk, I would not even consider responding or waste time in thinking about it.

Now the fact that all this is not happening lends more credibility to CCSVI (who would waste time in a hoax theory) ...


I pondered this myself. I tried to put myself in their shoes. But I came up with the same thing. A professional would just ignore something they thought was completely out of the question. So what would drive them to publicly try to discredit CCSVI?? I'm thinking fear of loss. Either loss of credibility for not finding this 30 years ago, or money.
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Correction: HOPE is always VITAL!

Postby Neurologique » Tue May 18, 2010 12:15 am

Dear ozarkcanoer,

I wanted to take this opportunity to correct myself in this public forum.

You raise excellent points about the easily misinterpreted phrase "false hope." Hope is never a false thing, in fact it is what keeps us moving forward everyday.

Unfortunately "hope" has been thrown around a lot during the last election and this may have led to these imprecise statements.

CCSVI is definitely something that needs to be further investigated -- this does NOT mean I am saying that people cannot choose to have procedures done prior to more definitive research. I truly understand a person or a family wanting access to something NOW and not wanting to wait until it has been proven.

As usual, people in this forum made excellent points, such as the comment about a neurologist saying a few years ago that there is "hope" because the oral medications will be coming out. While the medications are still not out yet, so it would have been difficult then to say that they were going to work, there was preliminary evidence, as well as mechanism that makes sense (to us).

As an MS specialist, I couldn't help my patients without thinking outside the box of on label medications (ABCERT and N). I would have no 'hope' to offer my primary progressive MS patients, if I didn't offer them off laebl medications, such as chemotherapies (not FDA approved for MS) and LDN (low dose naltrexone), among other things. Even if venoplasty works for 1% of the MS population, that is still 1% better than right now.


I know all the doctors (the MS specialists) that everyone is talking to and I can tell you that (by and large) they are extremely caring people who went into Neurology and then as a sub-specialization into MS, not because they wanted to prevent their patients from getting the care, they so desperately DESERVE, but because they care about helping others. There is something you have to realize about neurologists, though, neurologists are very conservative. Neurology is the field of bow ties and 19th Century names for physical examination findings. 75% of neurologists are over the age of 45 and it is not that your doctors don't want to help you, but that they do -- it is just that leaps of faith are not suited for everyone.

I read another good point by someone on this forum -- why are the people opposed to the Liberation Procedure so vocal and why not just let it happen? Truthfully, I agree with that person 100%. All I want to do as a physician is protect my patients -- our first and core principle is primum non nocere ("first, do no harm"). Well, there are 2 ways of causing harm, and I think doctors are focusing on the more conservative one:

Harm can be prevented by:
1. Taking less risks.
2. Taking risks that have the potential for great benefit.

Unfortunately, depending on how conservative you are, you may lean more towards "1" than "2." People, especially with aggressive or progressive MS, are much more likely to lean towards "2." This is exactly what I do in an office visit, I try to gauge a person'a risk tolerance. Everybody is different -- some people come in asking for medications that have potentially lethal side effects, while other people refuse to even consider taking any chance of a side effect (even if there is a chance of benefit).

Some of my patients have flown to Italy to see Dr. Zamboni and others would never dream of it. This is also why it is so gratifying to be an MS doctor and to be a part of the vibrant MS community -- because every single person's personality and life view are so unique. My job as a physician, is to help you reach the goals that you have, while not acting irresponsibly.

This is where, I think, the concept of "false hope" arose -- when a new drug is being developed, we never say that it is going to have such dramatic effects that people's expectations far surpass the potential benefits and this is exactly what doctors are concerned about (remember that doctor who spoke about "hope" with oral medications -- she wasn't saying "hope" because it will cure MS, but "hope" because you may be able to escape from the bondage of a needle).

The people who have the most to benefit from treating CCSVI are those with progressive MS (since there are NO effective treatments, although some that I do think help somewhat) but in the paper published by Dr. Zamboni's group, there was no clinical benefit for people with SPMS and PPMS, even though it should have been easy to show a benefit, since it was an open-label (non-controlled, randomized or blinded) study.

This was hugely disappointing, and I remember clearly speaking (and giving the article) to Dr. Dunn. He was frustrated because there had just been those two terrible outcomes at Stanford, and he felt pulled into taking responsibility for patients who weren't his and a procedure he didn't sanction. It wasn't that he doesn't want his patients to have hope; the opposite is true -- he wants hope, but reasonable hope.


I really appreciate the opportunity to share some of my thoughts in this amazing dialogue. I always try to be that bridge between patients and "mainstream" medicine and I hope that, at least, some people find the things we do useful -- such as the video with Clay Walker about CCSVI:

See: http://www.youtube.com/watch?v=Zg7yW15Wjw8 or http://bit.ly/aqXs08


So, I want to apologize fpr the use of the phrase "false hope;" you have to understand that we care deeply about our patients (otherwise, I wouldn't be writing this at 3:10 AM EDT!), and that also means trying to make expectations )and hopes) more reasonable.


Could the Liberation Procedure be amazing?
Sure

Would we be ecstatic as physicians and PEOPLE if that were the case?
100% YES

So, am I hopeful? Yes; but that hope is tempered by the many other things we have seen come and go in regards to the treatment of MS .... hopefully this will be different....
Thank you,

Daniel Kantor, MD BSE
Medical Director
Neurologique

President-Elect
Florida Society of Neurology
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Postby muse » Tue May 18, 2010 1:25 am

We don't buy, we sell Mr. President-Elect of the Florida Society of Neurology
Arne http://www.csvi-ms.net/en

Here we go:

NZ-Human Rights Commission *Project:

Dear Sir/Madam

I would like to register a complaint with the Human Rights Commission of New Zealand. This complaint regards the restriction of medical treatment to people with Multiple Sclerosis (PwMS). In particular, PwMS are being denied analysis and treatment for blocked veins draining their brain and spine. This condition is called Chronic Cerebrospinal Venous Insufficiency (CCSVI). It is analysed using Doppler Ultrasound, MRV, and venogram. It is frequently treated using balloon angioplasty. This form of analysis and treatment of veinous problems is straightforward for people without MS. Unfortunately, people with MS are currently being denied this in New Zealand. This is discriminatory. It is a perversion of the New Zealand Public Health and Disability Act (2000), as well as the United Nations Convention on the Rights of Persons with Disabilities, which the NZ government ratified in 2007.

SPECIFIC CASE: Physicians of NZ have denied me analysis and treatment of my CCSVI using venography and angioplasty, because I also have MS. If I did not have MS, and had a veinous disorder, I would be granted access to this treatment. Specific details of the parties involved are available upon request.

I am losing my quality of life and productivity. Aside from this, my experience has been:

1.) PwMS frequently have to “doctor shop” to get a referral to an appropriate veinous specialist, as neurologists will not provide referrals to PwMS.
2.) PwMS have to lie about their medical history (to GPs, radiologists, and veinous specialists) in order to access analysis and treatment.
3.) PwMS go abroad to be treated. Unfortunately, the treatment is not then chargeable to the New Zealand government.
4.) PwMS are ultimately forced to launch class actions against doctors and hospitals. This is time consuming, costly, and will clog our courts.
At the end I and a disproportionately large percentage of PwMS, in our deepening frustration and desperation, may resort to suicide.

Further information:

1.) CCSVI (chronic cerebrospinal venous insufficiency) is a disease recognized by the International uni0n of Phlebology (IUP)-2009.
Diagnosis and treatment of venous malformations Consensus Document of the International uni0n of Phlebology (IUP)-2009.: http://www.ncbi.nlm.nih.gov/pubmed/20087280

2.) The UN-Convention on the Rights of Persons with Disabilities: http://www.un.org/disabilities/default. ... 12&pid=150

Article 25: - http://www.un.org/disabilities/default.asp?id=285 paragraph:

b) Provide those health services needed by persons with disabilities specifically because of their disabilities, including early identification and intervention as appropriate, and services designed to minimize and prevent further disabilities, including among children and older persons;
f) Prevent discriminatory denial of health care or health services or food and fluids on the basis of disability. *thanx H.!

Yours faithfully
Arne Kaminsky
proved EXPERT in "MS" & HOPE = http://de.wikipedia.org/w/index.php?tit ... 0120230821
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