Friday, December 10, 2010

December 10, 2010

Fighting the Powers-that-be

It has come to my attention that some frustrated MSers have taken to writing hate mail to the MS doctors and neurologists that are speaking out against the involvement of CCSVI in MS and the treatment of angioplasty to alleviate some or all of it's symptoms.

Hate mail is a very unwise course of action. It is illegal. . You could find yourself on the wrong side of a court room if you do it. So Please do not do it! The Powers-that-be can be fought and we can win but not by following that particular course of action.

If you  are a fan of any of the popular crime series such as NCIS, you know that tracing emails is very possible. It takes, in fact, more time than in the shows, but it is relatively easy to do. There are people behind bars today thanks to the technology that makes tracing calls so easy for law enforcement - even when you think you have covered your tracks. Here in Canada and in a good many other countries, we want the laws to change in our favour. We want doctors with a vested interest in keeping this treatment out, brought up before the courts and made to pay for putting our health and for some people, our lives at risk so they can make the big bucks and live high on the hog! Hate mail is not going to do it!!!!

What will do it is a concerted effort to educate the public about MS and CCSVI and to get them on our side. When we spend our time in MS group rooms at Facebook and sites like CCSVI Locator - - we learn a lot about others situations but we tend to forget that most people know nothing about the subject. So we need to find ways to spread the word about the condition, the treatments available, the results of these treatments, our own experiences about living with MS etc etc etc.

If you write well - send letters to the editors of the papers that service your area - big and small. Keep them factual - making up stories or exaggerating reality is not necessary. One good way is to ask the reader to close her eyes and try to imagine her own life with one of your symptoms.  eg. I cannot pee without catheterizing myself. This is a good deal more complicated than pulling down my briefs and plunking my butt on the john! Ask your reader to envision having to carry a catheter in her purse everywhere she goes; inserting it in her bladder when she needs to go - doing this takes some getting used to and doing it wrong is easy even for us old hands at it; finding a way to aim the urine into the john without getting it all over yourself or the floor. It's not as easy as it might sound. It is , in fact, a royal pain. It can also lead to horrid bladder infections and very often does. This problem for men is even worse - they are most often fitted with a Foley Catheter that requires medical attention to put in and to keep clean.and a bag that needs emptying periodically. I do not know one man who would do that if they could find  a better way. In fact, on this score I am very grateful to be a woman.

If you see articles written about MS or CCSVI, write in response - to either congratulate the writer on an article well written or to correct errors in fact that you see or just to give you opinion. Keep the curse words out. Saying them might make you feel better but letters containing curse words are usually deleted by the editors. If you are sending hard copy letters, know that yours may not get printed. But know also that the editors look at the numbers of letters they get on a subject to determine whether they should assign a journalist to continue writing about the subject. So whether they get printed or not, your letters have a value. Do not discount that value. Do not stop writing.

Write your member of Parliament. Chances are they will not respond. Write them anyway. Write the guy in your riding; write the minister of health, both federally and provincially. If the tone of your letter leans on the legal aspects, write the minister in charge of that. Write your city councilmen.

Do you know a local businessman who has influence in your neighbourhood?  Have a lunch with him and try to get him on your side.

Is there evidence that the people in power are abusing that power; are taking money from drug companies ; are themselves threatening MS patients - get in touch with the RCMP if you are Canadian, or the FBI if you are American or the MI division that deals with that in the UK. Be sure to have some reasonable documentation when you do this though. As they used to say on "Dragnet", "The facts, ma'am. Only the facts!"

Above all else - stay cool. I often write letters filled with the anger I have for the unfairness being leveled at us. It is good for the soul to call that guy a nasty name. But I do not send it right then. Later, when I am in a calmer frame of mind I go back and clean it up and send it after reading and rereading to make sure it says what I want. This is also a good way to make sure the spelling is correct, the tenses are correct and the grammar is correct. Letters filled with spelling errors are often dismissed - there is a spell check on my computer - it's great. My fingers have MS related problems and I depend on the spell check to help me write well. Some words like There and Their you just have to know - spell check does not correct them for you.

So go out there and calmly get us all the good attention you can!
Here's one thing you can do to help get us the notice we need for this cause:

Please vote for 'Saskatchewan's Top News Story of the Year'

 Please vote for 'Saskatchewan takes lead in plan to offer Clinical Trials for MS Liberation Therapy'.

You can place your vote at  

And please! No hate letters!

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