Friday, February 25, 2011

Go Ahead! Ask Me If I Am Angry!

February 25, 2011

I was going to email this to the Minister of Health. Then I realized that that is a horrific waste of pixels because she either deletes my letters or she files them in File 19 (aka the Garbage). When she does respond, she waits until she gets 8 or 10 letters and sends one standard form letter (You probably have one in your email if you have ever written her) and that letter does not address anything I have said. So if you feel she should see this, you tell her.

It is, in my opinion, flawed even before it begins.

The MS Society, on their site say, “A total of 100 participants including participants with MS and healthy individuals. Participants will be recruited through The Ottawa Hospital MS Clinic Research Unit. Recruitment number is approximate and is subject to change.”

This is indeed amazing. If we do not know what causes MS and the MS Society say that on their site –“While the cause (etiology) of MS is still not known” and if a person can live with MS for more than 20 years without ever being diagnosed and, Oh My God! Those diagnoses are made in part by anecdotal data collected from and supplied by the patient who is rarely a scientist, how on earth can Dr. Torres and his colleagues know whether the people involved with his study have MS or not? However do they determine a “healthy” participant from an affected one? Perhaps 20 years down the road, based on anecdotal data about things like a strange one time bout with double vision that ophthalmologists cannot explain, they will indeed be told they have MS and have had it for decades. Diagnosing MS, for those not in the know, is not as easy as, say Lyme Disease, which can be discovered with a blood test.

Lyme Disease brings to mind another question. The symptoms of Lyme Disease and MS are very often very similar. In fact, many people who have Lyme Disease go around thinking they have MS – for decades! Why? Good Question! But there is a reason – sort of. Canadian doctors, for the most part, do not test for Lyme Disease and when they do, they usually use a test called the Canadian Elisa. They call it the gold standard. It would be more accurate to call it the Fools Gold Standard because it misses 99% of the bacteria forms that cause Lyme Disease. The more accurate test is hard to find in Canada – The Western Blot. ** To me, and I have to admit I am not a doctor so this is just a opinion, we should all be tested first and properly with the Western Blot for Lyme Disease before being labeled with MS. Lyme Disease responds pretty well to antibiotics and can be put behind the patient very quickly if they in fact have it. Presently, the people with Lyme Disease are walking around thinking they have MS. Their doctors are treating them like they have MS. Again for those not in the know, that may very well mean being given drugs such as tysabri (it has killed people but still they prescribe it!) or one of the C.R.A.B. drugs. Some of those drugs cost $3,000.00 or more per patient per month. Gee whiz Guys! It does not take a rocket scientist to see there is no logic in their methods. You eliminate the possibility of the common cold before you diagnose pneumonia. Similarly, you eliminate other possibilities like Lyme before you diagnose and sentence a person to hell with MS.

The ‘hell of MS’ is more than just the symptoms. Lord knows they are bad enough. MS truly is a label, a scarlet letter on your forehead. If my kidney fails and I need dialysis, I will probably be given vascular angioplasty more accurately called  venoplasty. If I happen to believe that Dr. Zamboni is right and that a good number of the people diagnosed with MS are in fact not suffering from MS but have a vascular problem called CCSVI (chronic cerebro-spinal venous insufficiency) I cannot get the treatment. The reason? I have MS on my file. It is not safe?? Then why are they doing it for everyone else who needs it?? The Scarlet Letters are written all over my file and the people trained to do this have been threatened with loss of license if they even try. In fact, just about anything I, an MS patient, complain about is ignored – I have MS so it has to be the culprit??  I can’t suffer the same things other people do?? Because I have MS?? Not even a little bit logical.

It is also assumed that I am stupid. I get spoken down to the same way that white plantation owners spoke to their black slaves. It has since been very well established, on this Continent anyway, that that type of behaviour is discrimination, based on attitude, not facts. It ticks me off even more because of all the people I have met with MS, there is not one person with a lower than average IQ and indeed many who are above average. My IQ tested at 129 for most of my life. Go on any CCSVI/MS chat line or blog and you will meet very intelligent people, many are professionals like Dr.Bill Code. That attitude may have worked in the past but the days of it carrying on this way are numbered. We are no longer isolated. It does not take month or weeks or days or hours to get news anymore. It takes a fraction of a fraction of a second.

Those “experts” the Health Ministry uses re MS are “experts” at what?? It sure a hell is not MS. It is not CCSVI. It is not Lyme Disease.  No one – not even a spouse or parent – really knows what MS fatigue is because you really have to experience it. The experts are the MSers. The best even a spouse or a parent can do is empathize. Empathize. Now that is  a good word for all you folks on Parliament Hill to learn. Even better – try practicing it. Regardless of what Ministry you are in.

Have you ever watched the news where CCSVI is being talked about? One Ottawa MS neurosurgeon suggested on National TV that they needed to do blind studies to be sure the improvements people had were not a placebo effect. Guess he missed the day Placebos were discussed in med class. A placebo is “An innocuous or inert medication; given as a pacifier or to the control group in experiments on the efficacy of a drug”. Vascular angioplasty is a procedure, not a drug. New procedures are performed all the time. Remember heart transplants? Do you really think Dr. Barnard cut a second patient up and pretended to transplant a heart so he could compare the two? Or the first patient to ever have a severed limb put back on? Did they cut a patients limb off and pretend to reattach it to see if there was a placebo effect?  This guy is too unreal! But I see he is still on the list of doctors at the Ottawa General and I see he is still on the list of doctors at the MS Society.

I was just looking at the MS page again. They plan to spend $102, 866 over 2 years. The MS Society spends more than that on their big salaries and on office equipment every year. How bloody big of them! NOT!! If you are thinking that by giving to the MS Society you are helping us poor MSer, think again. They do not help us. They do not diagnose us properly. They stuff us full of drugs that cost big time and do nothing that they can prove. They consider anyone who thinks they may be mistaken about the autoimmune hypothesis (a hypothesis is only a theory) is a cultist. Mostly they make big bucks at our expense and yours. So take my advice and stop giving to them. If you have money to give away, give it to the Salvation Army who’s CEO makes a just above poverty line income. Give it to someone trying to get a real Lyme disease test. Give it to one of the organizations that have sprung up to help people get vascular angioplasty in the USA. Give it to the Angioplasty For All group who are putting together a legal case to help us get Angioplasty allowed in Canada. There have been more than 12,000 angioplasty procedures carried out worldwide. Not all have been the magical cure but we all know it is not a magical cure. It is a viable treatment though for those who should have been diagnosed with CCSVI and not MS. You can read about them on the Internet; you can watch their before and after videos at UTube. Being mobile a year after the procedure without the use of a wheelchair is no placebo effect.

Something I learned as a little kid – If you make a mistake, own up to it. You still might get a spanking but chances are you won’t. Chances are, also, that you will be given an opportunity to fix the wrong or at least try. It might have something to do with when I grew up – the late 40s and early 50s. My Father was a war vet; my Mother opened the house to war refugees. They all talked about the war and good old Adolf Hitler and Benito Mussolini, When I was older the war became a big interest of mine – a chance to make sense of the stuff I heard but they didn’t think I paid any attention to. I learned a lot but mostly I learned that control and greed and hurting others leads to infamy instead of fame. It leads to horrid things happening to you. At the end of  WWII that meant being hung by your feet and paraded through the capital or dying in a bunker or spending the next 60 years being hunted down and hung or imprisoned. But this is Canada so I do not expect anything that desperate but I do expect that those who are keeping us sick when wellness is available; those taking our money for themselves and giving pain and suffering in return and those who are bullying us into capitulating are going to get theirs in the end.

Ms Aglukkaq, you were voted into office by your people to help your people. What have you done for them? As Minister of Health for Canada, you are expected by the Canadian people to do positive things towards helping the sick and disabled and to help the healthy stay healthy. Measuring the height of the lettering on cigarette packages is not impressive. Giving us 100 doctors for the outlying areas in a country the size of this one is not impressive. Not having a plan to keep them there by way of contract etc. is even less impressive. Listening to “experts” who are experts at nothing useful to MS patients is the least impressive thing you have done. I calls ‘em as I sees ‘em and his is how I see you and your Ministry. That’s my opinion. Now exactly what will you do to change my thinking? What are you going to do to stop this study and the waste of more Canadian taxpayer's money? My suggestion:1. Upgrade the testing for Lyme Disease and 2. Lift the ban on venoplasty for MS patients and 3. Fire the “panel of experts” you use on MS related matters – they are not experts in MS.

Karen Copeland
MS Dragonslayer

**  From Terri - Actually , that lyme  test sucks to, ( Western blot ) the most accurate is by many this -

IgeneX, Inc.
Palo Alto, CA
PCR test: $55, dead or alive. Can test for 5 things @ $55/test. MY choice
Turn-around time: 10 to 12 business days; ziplock bag.

No comments:

Post a Comment