This Is MS Multiple Sclerosis Community: Knowledge & Support

I met with my Member of Parliament , Libby Davies, today. I brought her the fantastic news regarding persons with MS in Kuwait getting testing and treatment for CCSVI.

I asked her to bring the matter to the Parliamentary Standing Committee on Health for immediate action.

We need to demand of our elected politicians that Canada become the second country to provide screening and testing for all at risk for CCSVI.

Was Ms Davies aware and /or receptive of the news?

Good job Brightspot! Did she give you her opinion on it at all?

Does anyone know how our system works? I mean do we keep at it with the MS Society or the gov't or both? Who makes that decision to clear the path for testing and treating?

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I feel like the MS Society is not working in our best interests at the moment. They don't want to upset the large pharma companies who are supporting them. I am not happy that they need years and years of research still!

I have sent a copy of the Kuwait News Agency report to both my MP and my MLA; I strongly feel we need to press this issue (Kuwait starts treating this issue why not Canada) on our elected officials so I am suggesting everyone write your MP, your MLA, and send copies of the Kuwait press release - google "Kuwait News Agency KUNA" and there is a press release under Kuwait News for April 8 / 2010. (I still haven't mastered the art of copy / paste of addresses !!!).
On similar topic, the CTV W5 program Saturday is doing an up-date on CCSVI and they are aware of (and hopefully will include) the Kuwaiti news.

Great work Welshman.

Re Libby Davies (my Member of Parliament) She was interested and aware of the issue having heard from other concerned folks.

I was able to provide her with some additional information about what is going on in Canada and in other countries.

I also pointed out to her that this could be viewed as a woman's issue as the vast majority of people with MS are women. (no offence guys..just another avenue to push this forward on behalf of us all).

I pointed out that this may be an issue for the Human Rights Commission, as it appears that persons with MS are being denied the right to treatment for a serious vascular condition on the basis of their having Multiple Sclerosis. (discrimination on the basis of disability).

This may be a particularly strong case for those who have obtained actual proof of vascular problems, either at private clinics in Canada or in other countries.

I may start another thread soon for those who may wish to pursue this avenue if we do not see rapid movement by the Standing Committee on Health, or Health Canada. I have done some preliminary research on the Human Rights Commission.

I spoke of the urgency of this matter, particularly for those suffering from the primary progressive form of the disease who need access immediately.

I asked her to request that The federal Parliamentary Standing Committee on Health review the matter immediately
.
She has agreed to approach the NDP member of The Standing Committee on Health and get back to me on Monday regarding the response she gets.

I vote Brightspot for Prime Minister!

http://winnipeg.ctv.ca/servlet/an/local ... nnipegHome

Kuwait to offer controversial MS treatment
Updated: Fri Apr. 09 2010 10:59:30

By Avis Favaro, CTV News
Kuwait has become the first country in the world to offer a controversial treatment to all its patients with multiple sclerosis who have blocked veins in their necks.
CTV News has confirmed that Kuwait's minister of health has given interventional radiologists in the country the go-ahead to use the state-financed medical system to begin treating patients who have blocked veins and abnormal blood flow in their necks.
According to a theory proposed by University of Ferrara's Dr. Paolo Zamboni in Italy, and first broadcast on CTV's W5 last November, many patients with MS have blocked or narrowed veins in their necks and chests. He calls the condition CCSVI, or chronic cerebrospinal venous insufficiency.
He theorizes that the blockage prevents blood from draining properly, sending it back to their brain, a problem that could contribute to the immune response that marks MS.
The theory has generated a lot of interest in Kuwait, which has high rates of MS, particularly among women.
In a telephone interview with CTV, Dr. Tariq Sinan, an interventional radiologist and an associate professor at the Department of Radiology in the Faculty of Medicine at Kuwait University says the health ministry will allow radiologists to begin treating MS patients who have CCSVI, starting next week, as part of an ongoing study.
The Kuwait News Agency KUNA also reported the development, quoting the chairman of the standing committee for co-ordination of medical research at the ministry, Dr. Youssof Al-Nesf, as saying: "The presentation meets the legal, moral and scientific criterions specified by concerned organizations, including the World Health Organization."
The decision is based on research by a team headed by Sinan who studied 12 MS patients in March. All of them had CCSVI and were offered what Zamboni has dubbed the Liberation Treatment. The treatment is a vein version of angioplasty, in which a small balloon is inserted into a blocked vein to force it open.
(No stents were used in the procedures, a practice some doctors around the world have tried and one that Dr. Zamboni does not endorse.)
Sinan says all of the patients saw improvements in their MS symptoms, with some noticing "dramatic" results.
"On one day, on March 3, we did three patients. Two had dramatic improvements on the table and started crying because they couldn't believe what they were feeling," Sinan reported.
He says patients with more severe MS reported fewer improvements, but did notice feeling less stiffness and more energy. Those with less severe disease, reported up to 90 per cent improvements in their fatigue and numbness in their hands and leg.
"In one case, the patient couldn't see from one eye and started to be able to see," Sinan reported.
Sinan said he's confident the results he saw were not the result of the "placebo effect," a phenomenon in which patients fool themselves into feeling better by an otherwise ineffective treatment.
"If this is a placebo effect and I have MS, I would want this placebo effect," Sinan said.
"It is amazing the kind of improvements the patients say they have. It cannot all be attributed to placebo. Not being able to see and then being able to see, better bladder control, end of foot drop -- that cannot be placebo."
Last week, Dr. Sinan says a group of neurologists petitioned the country's ministry of health to stop the treatments. Their concerns – shared by other MS specialists around the world -- is that the link between blocked veins and MS has not been proven, and that the treatment could be dangerous. They have called for more studies.
But after review, and submissions from physicians and patients, the decision was to allow the treatments, which will be covered by the state-financed medical system.
The procedure will not be performed to treat MS per se but to treat only "improper blood flow" in the veins.
"So we say this is a vascular problem in the neck. Patients, when you dilate the veins, they feel better. We don't have to talk about MS or the link to MS," said Sinan.
Patients will be warned that the procedure is experimental, and the potential risks of venoplasty will be detailed in consent forms. Patients who agree to treatment will be part of an ongoing study that will be done in cooperation with a Kuwait neurologist.
The team will use ultrasounds and magnetic resonance venograms to scan the neck veins, as well as MRIs to track changes in the brain, including the appearance of MS-related lesions.
Doctors hope to treat 10 Kuwaiti patients a week, beginning next week.

Your name so suits you Brightspot as you are BRILLIANT - Way to go!!!!

For more of the above, check out the W5 program on CTV this Saturday night at 7pm.

http://www.ctv.ca/servlet/ArticleNews/s ... ?hub=WFive

Excellent communication Brightspot. I wrote the Federal minister of Health, plus all the opposition health critics and the party leaders on the issue that CCSVI should not be the sole responsibility of the MS Society to fund research. It is a general health issue when our citizens have blocked veins, and Canadian citizens have to travel to other countries in the world to be treated. MS is a side issue of blocked veins.

Hi, I live in Quebec and would like to write a letter to the Federal minister of health. Could somebody tell me how can I find the right email address for that purpose ? Thanks.

Also, if any of you has already written a nice, detailed letter, do you mind sharing it here so I may get some inspiration !!

I wrote a letter and sent it by email to the MS society and Canada; I got a quick answer saying my letter will be addressed to the right person and that I will get a reply soon. It's been three weeks and no reply yet ! So, honestly, I don't rely on the MS society for advocating our case.. I feel we should pressure our political representatives, at the provincial and federal level.

Niceflow Contact info you requested


The Honourable Leona Aglukkaq

Minister of Health

Fax: (613) 996-9764
Email: Aglukkaq.L@parl.gc.ca

Thank you Salerdog for the contact info. I appreciate it.

Niceflow check your inbox for private message.