Things That Make You Go Hmmm.

Here you will find posts pertaining to my take on issues that have made me stop and reflect.




CCSVI Confusion

Tuesday June 28 , 2010

November, an Italian doctor by the name of Paolo Zamboni gained major press with his findings about multiple sclerosis and the Liberation Treatment. His findings concluded that MS is likely not an autoimmune disease as originally suspected, but rather caused by a condition called chronic cerebrospinal venous insufficiency (CCSVI). CCSVI is a condition in which blood flow from the body's central nervous system is impeded. It has been suggested that CCSVI causes reflux of blood flow and can alter the blood-brain barrier . Additionally, CCSVI has been linked to blockages of the jugular vein and the vein that lies to the right of the spine. These blockages have been blamed for a build-up of iron around the cerebral veins. In Dr. Zamboni's study, every patient treated showed evidence of CCSVI in screening and there was no report of healthy subjects showing CCSVI.

Dr. Zamboni, and several doctors around the world, have reported great success performing angioplasties  to restore the blood flow to and from the nervous system in treating MS. These findings have sparked a sense of hope within the MS community that has never existed before. This revelation has also created a sense of desperation and with that an out-pouring of anger, resentment and conspiracy theories directed at the MS societies, the neurological community and governments in Canada and the US.
I, having MS myself, understand the desperation for a cure. I understand the fear and emotional turmoil associated with this disease, not to mention the physical agony that it can inflict. I, myself, am in fairly good health with only one or two flair-ups per year usually limited to weakness, numbness and neuropathic pain. As a result of relapses, I have been completely paralyzed on one side of my body and thankfully recovered almost fully. I have also suffered blindness in my right eye, which has since worked itself out. I understand the impact that this disease has on people's lives. I am not suggesting on any terms that people should not seek this treatment if they feel that it is right for them. I am not a doctor, nor a scientist and this piece of writing is purely my opinion based on what I know. I do not claim to have all of the facts, no one does, but I can't help being sceptical about treating CCSVI to cure MS.

To be totally honest, I'm confused!

Since Dr. Zamboni's discovery, studies have been publicized and many independent studies have been conducted to further research his hypothesis. The National MS Society (US) and the MS Society of Canada have collaborated on funding seven research studies, to my knowledge these studies have not yet concluded. The University at Buffalo conducted a study of roughly 500 patients and found that a little over half of them had narrowing in their veins, it also found that around 22 percent of the healthy subjects had narrowing as well. As far as I can tell this isn't the first set of results to conclude that venous obstructions of this kind are not limited to people with MS. To me, this is evidence that people with MS are more prone to venous obstructions; but it raises questions. (1)Why? Is it the CCSVI that causes MS, or is CCSVI an aggravator? (2) If people who are free of MS have venous obstructions associated with CCSVI, doesn't it also suggest that CCSVI may not be the cause of MS? (3) Is it perhaps one of many factors that causes or exacerbates MS? Since the triggers and progression of each patient's disease are unique and unpredictable, then is it not possible that the Liberation Treatment isn't a solution for everyone?
I have found in my quest for information that Dr.Zamboni is not the first to take an interest in the effects of blood flow to the brain one Tracy J. Putnam MD reported in 1934 -35 the findings of a study which suggested, as I understand it, that there is a correlation between venous obstructions and myelin plaques.

There is another piece of this puzzle. Money!

It isn't a secret that many researchers, employees of MS societies, neurologists specializing in MS and others stand to lose money, funding and jobs if it turns out that CCSVI is indeed the cause and angioplasty the cure for MS. Biogen Idec, the maker of Avonex and Tysabri stands to lose millions if not billions of dollars if CCSVI removes the need for recurring treatments.

What I find particularly mind blowing about this situation is that people are so desperate to have the surgery that they are willing to pay thousands of dollars –incurring debt through loans and payment plans- and potentially risk their health to have the procedure done both in the U.S. and overseas. Vascular and thoracic surgeons, along with independent diagnostic clinics and radiologists stand to benefit from this situation financially and I worry that there are no checks in place to ensure hopeful patients aren’t taken advantage of.

I've heard of neurologists at MS clinics being completely against the procedure, citing that there are many dangers associated with the treatment and likely no benefit to be had. I've seen the results of the studies and heard the stories of pioneering patients who have had major successes with the treatment. I've heard of surgeons saying that there is a definite benefit to having the surgery and patients should have it. It seems like the groups who stand to lose are fighting against the treatment while those who stand to gain are fighting for it.

So who is in the middle confused and without answers? US! As of the time I am writing this, Cnadian patients with MS are being denied access to this surgery at home. Provinces haven't alotted money in their annual healthcare budgets for angioplasty to support the thousands of Canadians who are seeking the treatment.  And why can't we pay cash at home when other countries are happy to take our money? Well that's a whole new can of worms labelled two-tier health care. It's a tricky situation.

Getting angry and posting nasty messages on MS society pages, blogs and forums isn't the answer. This isn't a black and white situation. There are a lot of emotions involved and many angles to be evaluated. Here is my take on the situation:

1.Patience. The MS community has proven themselves to be persistent and resourceful in getting the treatments needed so far. So keep the faith. The best things are worth waiting for.

2. Get involved in research. Enrol in one of the studies, or donate to fund research if you’re interested in helping to sort all of this out.

3. There is no neutral third party in this situation. The government isn't in the practice of stepping in to analyze data in these situations. Though in this case it would likely be in their best interest to do so. MS costs individual provinces millions, if not billions, of dollars per year in drug therapies, ER visits, physical therapies and diagnostics.

I would like to see a team of thoracic/ vascular surgeons and neurologists work together to formulate and conduct a study.

Researchers, doctors and patients need to work together on this. It is time to put egos and emotions aside and work together for the greater good. Yes, MS Societies and neurologists are being slow to accept the Liberation Treatment. There is much more research required to understand the correlation between CCSVI and MS.

On that note, I will say I am hopeful and intrigued by this development. I have a requisition for a doppler ultrasound of my jugular veins and I’m interested in discovering the outcome, but I don’t think I’ll be rushing out to get the surgery just yet.





You Are What You Post

Tuesday June 15, 2010
It seems these days that privacy has gone the way of the dodo. The advent of social media has allowed us to conveniently keep in touch with family and friends that we may not see often. It has also presented opportunities to reconnect with people you haven't seen in several years; but social media isn't all good and not everyone is intelligent in their use of these sites. Social media has also made it possible for anyone to access your personal information and pictures from anywhere in the world.
We've all seen questionable photos and statements pop up in our news feeds that leave us wondering "what were you thinking when you posted that?" The fact is that many people don't realize that what they put online defines how people view them, whether it's an accurate portrayal or not. These days even companies looking to hire will check out a Facebook page to verify a candidate's character. Most of us have heard stories of So and So's friend's cousin loosing a job because of their Facebook and Twitter content. The fact is that while it may be fun to post a picture of you with a beer label stuck to your forehead and a sharpie goatee, it can also be damaging to your reputation. Particularly if there are more than one of these portraits. You may think it's funny, but your prospective or current boss may not think so. Can anyone say unreliable drunk? This is also true if most of your photos show you scantily clad in mini skirts or booty shorts posing with your kiester and tatas out circa Girls Gone Wild high school edition. Just know you don't look sexy. You look cheap and desperate for attention. If you're ok with that, then by all means fill yer boots, but be aware that one day there may be consequences in your personal or professional life for your posting promiscuity.
Even law enforcement uses social media to their benefit these days. Don't believe that? Then please refer to the story of Joshua Lipton who was convicted of a drunk driving charge with the help of his Facebook profile. Two weeks after he was charged with driving drunk and seriously injuring a woman, he posted a photo of himself at a halloween party, drunk, wearing a prison jumpsuit. FAIL!
Facebook and Twitter are fun, engaging tools and no one says that your profile has to present you as a saint, but BE CAREFUL. Once it's posted, it's out there and there is no going back. Facebook and Twitter have assisted with countless break-ups, losses of employment, criminal convictions and many, many groundings since their arrival on the World Wide Web. You are what you post.
For more advice on Facebook don'ts visit The Seven Deadly Sins of Facebook Users and Abusers






Dating In PR Land

Tuesday June 01, 2010

There are many areas of our daily lives in which we practice public relations without realizing it. Dating is one and it is the one that I'm going to focus on today. As a chronic dater and student of PR, it could be assumed that I am an expert on this topic...I am not an expert, just an experienced observer.

I'm sure we've all been on a date where the person we're with discusses their previous relationship crash and burns. This would be like a company highlighting all of their previous business mishaps on their website and press conferences. They don't do it and there's a reason why. The practice of focusing on the negative has a funny way of presenting you in a negative light. The goal is always to focus on the positive. So if you are one of these dating offenders remember: Don't bring up past relationships unless you're asked, avoid the subject on for the first few dates if possible. If something must be said stick with a quick response like "We had some fun together in the end it didn't work out". Be generic positive and then change the subject.

Honesty is the best policy. This is a big one. We need only look at
Tiger Woods, Jesse James and Bill Clinton to know that if you lie you will get caught. Both in dating and pr getting caught in a lie is a lot harder to recover from than being honest and it usually requires a lot of work to clean up the mess. That is IF you can clean it up. Major PR fail if you ask me.

Choosing to represent yourself as a "crap" brand is also something that a company would never do. I went out with a guy when I was in high school who insisted on boasting about his wrap sheet and detention record as though I would be impressed that he was such a rebel. Let's get one thing straight. Do you think that when an organization is seeking investors or partnerships that they go out of their way to boast about how many industrial accidents they've had in the last year or how many of their employees are embezzlers? They don't! And they don't because no one wants to invest in a company, or a person, who is so proud of being irresponsible or stupid. I mean, would you invest money or time in
BP Global at this point? So, if you show up for dinner dressed like a slob, Andrew W.K. style, and make a point of discussing how you almost got arrested last weekend because of how drunk you were, don't be surprised if you don't get a second date.

Would you direct your PR campaign for the new Depends at teenagers? Or arrange a partnership agreement between Ensure and Pedigree? Probably not, wrong demographic for the plan and those two products have nothing in common. This leads us to another major dating fail, dating people you shouldn't. I get that opposites attract and it can be fun to spend time with someone who is very different than you are, but often these types of relationships don't work out. I have a friend who is completely disgusted by body art and terrified of motorcycles. Last week she went to dinner with a motorcycle riding tattoo artist. Is it a surprise to anyone that they haven't spoken since? Probably not. What is shocking is that they bothered to have dinner at all. Choose your demographic wisely when selecting someone to spend the evening with, having the sense to date someone you like rather than date for the sake of it raises the chances of a more enjoyable experience.

I'm sure I could go on all day, but those are my big three.

If you are interested in more advice to help you avoid dating FAILS check out
Ten Bad Dating Habits for Men or Ten Bad Dating Habits For Women.





Propaganda V. Public Relations

Wednesday May 28 , 2010
Is propaganda the same as public relations? Or can a clear line be drawn between the two?

Public relations began as a post-war effort to control the masses. The concept was derived by a man named Edward Bernays, who incidentally was the nephew of one Sigmund Freud.

Bernays was working as a press agent prior to U.S. involvement in WWII and was invited to become a part of the U.S. propaganda machine later on. It was only after the war had ended that he determined, "If you could use propaganda for war, you could certainly use it for peace."

He concluded that, based on his uncle's deductions about the human mind and his success in promoting the war at home and abroad, propaganda could be used to dominate the masses and create a means to use the unconscious mind to sway the public's thinking during peace time.


In this spirit, and as a result of the negative connotation of the word propaganda, he derived a new phrase to describe the process of mass manipulation. He was the first to use the words "public relations."


One of his earliest campaigns encircled the social unacceptability of women smokers. In order to break down this barrier and entice women to light up, he tied smoking to the suffragette movement based on Freud's conclusion that a cigarette was a phallic symbol. He called them "torches of freedom."

So are the terms pr and propaganda synonymous? I think it depends on how you look at it. According to Bernays, he created the term public relations so that he could conduct similar business in peace time free of the negative connotation of the word propaganda. Propaganda had become a bad word thanks to Joseph Goebbels, Nazi propaganda minister. Throughout the war, Goebbels developed campaigns that were built around generating centralized hate and building war support for the efforts of the Nazi party. His campaigns were all consuming and citizens of German occupied territory were exposed to these messages at all times throughout the day in films, posters and radio programming. The success of the propaganda Goebbels created rested on one thing, shielding the masses from both the consequences on what they've been lead to believe and extinguishing the voices of those who are of an opposing view.

“If you tell a lie big enough and keep repeating it, people will eventually come to believe it. The lie can be maintained only for such time as the State can shield the people from the political, economic and/or military consequences of the lie. It thus becomes vitally important for the State to use all of its powers to repress dissent, for the truth is the mortal enemy of the lie, and thus by extension, the truth is the greatest enemy of the State.” - Joseph Goebbels


Today, I think public relations is meant to be used more as a vehicle for communication with the public and information sharing than it is used for manipulation. Pr is generally utilized to develop a positive perception of an organization, or person and very often pr is used to generate positive behaviour, thoughts and attitudes that benefit many.

One of the most defining differences between the two is centered on the idea that propaganda is used to generate a negative image of a person, group, institution or corporation while pr is used to generate a positive image.

Does propaganda still exist? I think it largely depends on where you are in the world. In nations where information is filtered and strictly governed by the powers that be it is easy to sway public opinion however you choose. In democratic nations where freedom of press, freedom of information and freedom of speech exist it is more difficult for propaganda to exist. Large corporations and governments are subject to laws ensuring that they are responsible in the way they conduct business with the public. That’s not to say that propaganda doesn’t exist in democratic nations mind you, but thanks to largely unregulated content on the World Wide Web and the sheer volume of information that the general public has available to them at any time it is difficult to create all encompassing mass think. Public relations exists to convey messages. At times pr is used to create behavioural and attitudinal changes, but this is not done through the disguising of information and skewing of the facts. In fact, it is done by presenting the facts and posing a call to action. Any person wishing to form an opinion can always do further research and decide if they agree with a call to action, or not.
Are you practicing pr or propaganda? In the end I think it comes down to a fine line and the line is drawn on responsibility and integrity.

Definitions:
The Oxford dictionary definitions (
www.askoxford.com):

Propaganda • noun information, especially of a biased or misleading nature, used to promote a political cause or point of view.

Public Relations • plural noun treated as sing. the professional maintenance of a favourable public image by an organization or famous person.

Webster’s English Dictionary definitions (www.merriam-webster.com):
Propaganda Main Entry: pro•pa•gan•da


Function: noun

Etymology: New Latin, from Congregatio de propaganda fide Congregation for propagating the faith, organization established by Pope Gregory XV †1623Date: 17181 capitalized : a congregation of the Roman curia having jurisdiction over missionary territories and related institutions2 : the spreading of ideas, information, or rumor for the purpose of helping or injuring an institution, a cause, or a person3 : ideas, facts, or allegations spread deliberately to further one's cause or to damage an opposing cause; also : a public action having such an effect.

Public Relations Main Entry: public relations

Function: noun plural but usually singular in construction

Usage: often attributive Date: 1807: the business of inducing the public to have understanding for and goodwill toward a person, firm, or institution; also : the degree of understanding and goodwill achieved

Information sources:






thinkexist.com

Love, Hate and Propaganda (CBC)