CCSVI 2010: The Year in Review

 

January 2010:
– Internet blogs, Facebook friends and chatroom klatsches discuss CCSVI following a W-5 news program on the procedure broadcast on November 19, 2009.
– The International Union of Phlebology votes unanimously to include CCSVI lesions in its new guidelines.
– An online petition calling for governments to approve CCSVI collects 12,000 signatures.
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February 2010:
– Neurosens publishes a special report on CCSVI summarizing the studies performed to date (Chronic cerebrospinal venous insufficiency (CCSVI), February 16, 2010).
– Hamilton, Ontario hosts a CCSVI and MS workshop. Guest speakers include Drs. Paulo Zamboni, Robert Zivadinov, Marian Simka and physicist Mark Haacke.
– Dr. Zivadinov issues a press release on the ongoing Combined Transcranial and Extracranial Venus Doppler Evaluation study in Buffalo. CCSVI is found in 55% of MS patients vs. 26% of healthy controls. Full results are presented at ECTRIMS in October.
– Alberta Health Services announces that there is no proven indication for venous imaging or venous angioplasty in MS patients, and these procedures will not be approved in Alberta (http://mssociety.ca/ccsvi/resources/20100216_ALbertaHealth.pdf).
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March 2010:
Neurology publishes a Point of View article stating that “invasive and potentially dangerous endovascular procedures as therapy for patients with MS should be discouraged.” Authors include Canadians Drs. Mark Freedman and Amit Bar-Or.
– A petition to make CCSVI available in the U.K. collects 10,665 signatures.
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April 2010:
International Angiology, published by the International Union of Angiology, publishes a special issue of nine CCSVI studies.
– The National MS Society and the AAN co-host a web forum on CCSVI at the AAN annual meeting. Dr. Zamboni advises patients to wait for new evidence about CCSVI and cautions against following “blogger patients”.
– The MS Society hosts a webcast on CCSVI for patients.
– MS patients in Calgary stage a CCSVI rally.
– Kuwait becomes the first country to pay for CCSVI interventions. The decision is made despite a petition by Kuwaiti neurologists to stop the treatments.
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May 2010:
Liberal MPs Drs. Kirsty Duncan and Carolyn Bennett post an open letter to Health Minister Leona Aglukkaq asking her to organize provincial health ministers to develop a plan enabling access to CCSVI interventions. They also ask for immediate screening for venous malformations.
– The MS Society of Canada asks Health Minister Aglukkaq to commit $10 million to CCSVI research.
– Detroit physicist Mark Haacke files papers to create the International Society for Neuro-Vascular Disease.
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June 2010:
Liberal MPs join MS patients at a rally on Parliament Hill, calling for the government to  invest in MS research.
– The MS Society of Canada and the U.S. National MS Society announce that they have committed $2.4 million to CCSVI research.
– The annual meeting of the MS Society is a tense affair as CCSVI proponents demand access to the procedure.
– Dr. Alain Beaudet, President of the Canadian Institutes for Health Research (CIHR), tells a parliamentary subcommittee on neurological disease that CIHR wants scientists to submit proposals on CCSVI research.
– Dr. Zamboni tells the House of Commons via videoconference that the Liberation procedure should be offered in a clinical trial in Canada.
– A Facebook page calls for the removal of Health Minister Leona Aglukkaq. By December, the page has 592 “friends”.
– Canadian MS patient Mahir Mostic, 35, of St. Catharines, Ontario, travels to Costa Rica to undergo balloon angioplasty. The trip costs a reported $30,000.
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July 2010:
The National MS Society and the MS Society of Canada launch funding for 7 CCSVI research studies. Principal investigators are Drs. Brenda Banwell, The Hospital for Sick Children; Fiona Costello, University of Calgary; Aaron Field, University of Wisconsin; Robert Fox, Cleveland Clinic; Carlos Torres, The Ottawa Hospital; Anthony Traboulsee, UBC, and Katherine Knox, University of Saskatchewan; and Jerry Wolinsky, University of Texas Health Science Center. Applications were reviewed by an international panel, including Drs. Virender Bhan, Halifax, and Thomas Marotta, Toronto.
– Saskatchewan Premier Brad Wall announces that his province is willing to fund CCSVI trials. Wall calls the Liberation procedure an “avenue of hope”.
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August 2010:
A German study of 56 MS patients and 20 controls reports that no subject met more than one of the CCSVI criteria (Doepp et al. Ann Neurol 2010; 68: 173-183).
– CIHR and the MS Society hold a joint meeting to discuss CCSVI. Recommendations include establishing a scientific expert working group, developing common standards for diagnosing CCSVI, and a pan-Canadian intervention trial if results from current studies indicate it is warranted (http://mssociety.ca/ccsvi/resources/20100826_CIHR_MSSummaryreportFINAL.pdf).
– CIHR President Dr. Alain Beaudet states in a press release: “There is an overwhelming lack of scientific evidence on the safety and efficacy of the procedure, or even that there is any link between blocked veins and MS.”
– Provincial Health Minister Jerome Kennedy announces that Newfoundland and Labrador will provide some funding for CCSVI clinical trials, reversing a previous announcement that the province would not fund trials.
– The Society of Interventional Radiology issues a position statement in support of CCSVI trials.
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September 2010:
Health Minister Aglukkaq announces that Canada does not have the evidence to proceed with a pan-Canadian intervention trial of CCSVI. The decision was based on the CIHR’s recommendations.
– At a meeting of health ministers later in the month, Aglukkaq states that she was misquoted: she “never said no” to funding clinical trials but is still open to the idea of a trial. (Source: Maclean’s, www2.macleans.ca/2010/09/15/aglukkaqs-message-on-ccsvi-treatment/).
– The board of directors of the MS Society of Canada unanimously approves setting aside $1 million for a Canadian trial of CCSVI.
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October 2010:
At ECTRIMS, Dr. Paulo Zamboni recommends no interventions until the pathological role of CCSVI has been demonstrated. The comments are published in NeuroSens (CCSVI: interventions not justified) and republished by the Globe and Mail. Dr. Zamboni also advises against medical tourism. Dr. Zivadinov states that CCSVI does not appear to play a causative role in MS.
– The London MS clinic reports that venous abnormalities are equally common in people with and without MS (Alikhani & Kremenchutzky. ECTRIMS, abstract P778).
– Simka and collegues present a poster at ECTRIMS on safety results for the first 347 CCSVI patients operated on in Poland. The event coincides with the one-year anniversary of the first CCSVI procedure performed in Poland, which was presented on YouTube  on Oct. 24, 2009.
– Dr. Zamboni sends a letter to Ken Hughes, chairman of Alberta Health Services, complaining that Alberta’s position statement on CCSVI is extremely confusing and irresponsible.
– Canadian MS patient Mahir Mostic, develops clotting problems around the stents inserted in Costa Rica. Back in Canada, Mostic is taken to hospital where he is allegedly refused treatment. He returns to Costa Rica and receives anticoagulants. He dies on October 19 of bleeding complications. It is the second death attributed to CCSVI interventions.
– Following Mostic’s death, the Ontario College of Physicians states that “there is an ethical obligation to treat patients regardless of the source of the care if they experience a complication, but it would have to be done by people who feel qualified to do that.”
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November 2010:
A U.K. study reports pathological CSF ferritin levels in 10-23% of MS patients vs. 4% of controls, 23% of patients with meningoencephalitis, and 73% of patients with subarachnoid hemorrhage (Worthington et al. Neurology 2010; 75: 1617-1622).
– The Quebec College of Physicians holds a news conference to warn MS patients not to seek the Liberation treatment at clinics outside of Canada.
– Premier David Alward announces that New Brunswick will create a $500,000 fund to help MS patients seeking CCSVI treatments overseas.
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December 2010:
The Cardiovascular and Interventional Radiological Society of Europe (CIRSE) states that “the basis for this new treatment rests on anecdotal evidence and successful testimonies by patients on the Internet…[T]his is not a sound basis on which to offer a new treatment…” (Reekers et al. Cardiovasc Intervent Radiol, epublished December 7, 2010).
– An Angus-Reid poll of 2,011 Canadians finds that 75% support government-funded trials of CCSVI, and 82% support making the treatment available to Canadian patients. However, one-half of respondents had never heard of the procedure.
– Online petitions  for Canada, the U.S., the U.K., Australia, Poland and Serbia calling for CCSVI to be approved collect 36,903 signatures. A total of 47% of signatories on the global petitions are from Canada.
– A Google search yields 26,000 blogs on CCSVI.
– In his year-end interview with the Globe and Mail, Michael Ignatieff says that a Liberal government would fund clinical trials of CCSVI. “Why can’t Canadians get a shot at getting at something that might have a therapeutic benefit?” he says (www.theglobeandmail.com/news/politics/ottawa-notebook/your-question-for-ignatieff-yes-liberals-would-fund-ms-treatment/article1841344/?cmpid=rss1).
– Mahir Mostic’s girlfriend agrees to a broadcast of a video showing his attempts at walking.
– A video of Dr. Zamboni performing a Doppler exam records its 68,000th hit on YouTube.
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