Thursday, August 19, 2010

Reformed MS Society

Dear Friend,
It is incredible

This is your August update from ReformedMS. This report deals with the following:

1. Making CCSVI legal and paid for by your provincial health plan
2. The key arguments against CCSVI
3. Welcome to our full time administrator Elizabeth Zinder de Jesus
4. ReformedMS is included in government consultations
Making CCSVI legal and paid for by your provincial health plan.

We know what living with MS is like. We know that time is not something that those of us that are suffering with MS (or caring for a loved one) and are struggling day by day just to exist, can afford. We know for certain that the treatment of CCSVI provides immediate, significant relief to MS symptoms to most MS patients including progressives. We will not lose sight, that each day of delay, lengthens the suffering of over 40,000 Canadian MS patients. Our objective at ReformedMS is to provide Canadian MS patients relief from pain and suffering b y legalizing the treatment of CCSVI now!

To make the treatment of CCSVI legal, medical policy decision makers must be educated. They need to learn that treating CCSVI not only benefits MS patients, but benefits society as a whole, reduces provincial health care costs, and benefits the medical profession. Health care policy makers must have facts and valid arguments for approving CCSVI, clearly and convincingly presented. Skepticism raised by anti CCSVI forces must be overcome. Bureaucracy is inherently conservative and slow to act. Change in thinking is difficult. ReformedMS provides the push.

The opposition to immediate approval of CCSVI comes from the MS Establishment. (Professional Medical Associations, Neurologists, companies selling MS drugs, and the Canadian MS Society). They have strong organizations with multimillion dollar budgets and heavily funded lobbyist. These folks have a lot to lose if CCSVI is approved as a treatable abnormality. They are on the defensive. They are working the System. They are working for delays. They are praying for some unforeseen calamity to happen that will preserve their portion of the $15 billion annual MS budget.

The Reformed MS Society presents to governments and other decision makers rational arguments for the immediate approval of CCSVI. ReformedMS is the most effective spokesman against the MS Establishment, whose skepticism about CCSVI dominates medical and bureaucratic thinking, with the following arguments:

The key arguments against the immediate approval of CCSVI:

1. The scientific evidence is small, weak and potentially flawed;
2. Double blinded clinical studies are required to prove safety, efficacy, duration of the treatment before CCSVI approval;
3. The Liberation Treatment (angioplasty of the jugular and azygos veins) is potentially dangerous; needs to be tested, does not work on everyone; has been harmful to some;
4 . The link between MS and CCSVI needs to proven;
5. How long veins stay open is problematic;
6. Placebo affect is significant,
7. Anecdotal evidence (individual patients' experiences) is not evidence
8. It is wrong to raise false hope in MS patients

ReformedMS is able to effectively address these arguments head on, put them into perspective and to present valid and scientifically acceptable counter arguments. The treatment of CCSVI provides immediate, significant relief to MS symptoms to most MS patients including progressives. Fighting against CCSVI is fighting against Canadian MS patients. We are starting to prove this to those that are making the decisions. The recent announcement by the Government of Saskatchewan that they will be funding treatment trials is evidence that we are making progress.

Welcome to our full time administrator Elizabeth Zinder de Jesus

Please welcome Elizabeth Zinder de Jesus as our Administrato r. Elizabeth has been spending the last two weeks training on our integrated computer system which she is starting to master. Elizabeth is the first full time paid Administrator that will insure among other things that all monies are properly recorded, mail is answered, and volunteers are kept productively occupied. You can reach Elizabeth at our office between 9 and 5, West Coast Time, at 604-435-4405 or by email

ReformedMS is included in government consultations

I am pleased to report that we are also being heard and included by Government. The ReformedMS was included in the August 11, 2010 meeting held by the BC Ministry of Health in Victoria BC and chaired by Ms. Valerie Tregillus. ReformedMS provided the patient focused input and responses to some of the above listed arguments that has been missing from official CCSVI discussions. The purpose of the meeting was to assist the Ministry of Health advise the government on C CSVI policy.

Your support is essential to the success of our cause. We need volunteers in all areas to help us. We need your help to set up small meetings with MS patients and caregivers across Canada.

There will be another update next week.

Warm personal regards,

The Reformed Multiple Sclerosis Society

(A British Columbia Nonprofit Corp. #S-56416, Application for Charitable Status with Revenue Canada is pending ),

Steven Simonyi-Gindele

MS Caregiver and Founding Director

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