Here is the discussion thread from Facebook that several of us did while the webcast was on. Summaries of all questions and answers are included (I hope the one next week goes better!):
CCSVI at UBC MS Clinic - Information and Support This fellow (Yves) wrote the most hostile comments right after W5 aired. The MS Society took it down a week or so later and softened it, but his message at the very beginning was insulting.
CCSVI at UBC MS Clinic - Information and Support Dr. Murray is glossing over Buffalo -- the 56% figure isn't about just multiple relapsing patients.
CCSVI at UBC MS Clinic - Information and Support I get the feeling this is all building towards bad news, i.e., not a call for widespread testing, just more of the same "wait and see" message.
CCSVI at UBC MS Clinic - Information and Support Now he's talking cost/benefit of therapy (i.e., treatment). It all comes down to $
Tessa Rushton apparently money is more important than helping us now!
Brenda Raven that's it, they're fired!!!
CCSVI at UBC MS Clinic - Information and Support Q: why won't doctors make referrals for testing?
A (DR. Murray): CCSVI procedure carries risks (he dwells on the complications...ugh). Testing requires specialized equipment that isn't available. He says drs won't make a referral if no treatment is available. Must be part of a study.
Lori Lumax sooo frustrating!
Tessa Rushton Dr Murray gave incorrect facts & is so politically driven it is obvious! Not impressed. Where are the people who had success when they received the procedure in Poland?
Kevane Bona Stronge of course...push the drugs!! not liking this dr.murray much at all!! ..I am not a doctor and I have done my research and YES there have been spms patients out there that are seeing some benefits...they did not prepare for this at all!!!
Tessa Rushton MS Society - STOP patting your own backs & talk about the issue!
CCSVI at UBC MS Clinic - Information and Support Q: why is the MS society contributing so little for research?
A (Yves): the $200,000 over 2 years is per project. They let "good science" drive how much they allocated for CCSVI. MS society will give the $ to all projects that meet "good science" criteria. He says they have made extraordinary efforts to accommodate CCSVI research because these projects missed the usual deadline. This was a result of grassroots demands from people (like us!). To get multimillions, multiple institutions need to come together -- CCSVI research can apply for this major funding too. He says Canada was first to make a commitment -- project will be announced in June.
Tessa Rushton They are currently NOT answering a question I submitted! LOL
CCSVI at UBC MS Clinic - Information and Support Q (from Tessa?? Is that you?): Why can't testing be done?
A (Karen Torrie-Racine): I will only get tested as part of a clinical trial. A (from Dr. Murray): no accepted protocol for testing. If treatment isn't going to be done for another year or so, the surgeon would need new tests anyway. Getting a test now isn't helpful.
Julie Way No protocols for the testing??? Has this Dr Murray been living under a rock?
CCSVI at UBC MS Clinic - Information and Support Q: If my veins are blocked, what is the risk for me to live without treatment for these blocked veins?
A: We don't know the answer to that. 25% of people in non_msers have blocked veins and they seem to be OK. CCSVI may be associated with MS, but it may not be the cause.
Dianna Newbury I agree Tessa. I don't know how much more I want to hear. Isn't it interesting that the MS Society is holding this session right before the next W5 report?
Ginger MacQueen Call Euro Medic they will give the protocols. Also VENOGRAMS are the gold standard for DX of CCSVI. We don’t even really need the MRV and Doppler as they are only possible indicators.
CCSVI at UBC MS Clinic - Information and Support Q: Did the Buffalo study use the same protocols as Dr. Zamboni?
A: Yes, Buffalo used the same protocol.
Shirley Renshaw I do not want any neuro to touch me coz I wonder if they have ulterior results!!
Quest just asked about the testing equip used in Buffalo study he said yes. That is NOT true.
Tessa Rushton It is me re the Tessa AB question... political double-speak! argh
CCSVI at UBC MS Clinic - Information and Support Q: Can a RRMS person have CCSVI (too much iron in brain) and be anemic?
A: yes, no relationship between iron in brain and blood iron levels. Many neurological diseases accumulate iron in the area of damage and we don't now if the iron is a side effect or causing the problem. The iron in the brain is separate from the venous issue.
Shirley Renshaw Yea someone just commented on the equip and protocol and .......she's great!!!!
CCSVI at UBC MS Clinic - Information and Support Q: Buffalo said it didn't follow the same protocol. The MS Society says not to get tested. Will they now exercise the same guidance for drug treatments that show they can harm certain people with MS (she's talking about interferon-beta research)? Why would you stop testing for CCSVI and not for drug treatments shown to be harmful?
Tessa Rushton misinformation galore! We've made decisions, now let us have the opportunity to act on them!
Shirley Renshaw Yves shut up!
CCSVI at UBC MS Clinic - Information and Support A: We want clinical trials b/c they need ethical consent and follow safety protocols. Trials also document any progress made by patients. These trials serve our interests to give people with MS the answers they need and move us closer to finding a cure.
Shirley Renshaw Murray loves to talk drugs!!!
CCSVI at UBC MS Clinic - Information and Support A: the interferon-beta study is premature. We will not be advising people to stop these drugs because of this small study. We would like to know if there's a way to find out if those people who would be harmed by a drug can be identified.
Julie Way Did they ever address their incorrect response about the equip/protocols used in Buffalo?
CCSVI at UBC MS Clinic - Information and Support Q: How long before CCSVI is assessed and treatment available to patients?
A: This has been going on for over 100 years. Dr. Zamboni only showed benefit to RRMS patients. Centres are evaluating CCSVI (mentions False Creek).
Tessa Rushton trials are not being run by neurologists at ms clinics... so the answer to the question regarding how you get involved in a study was again useless! If people ran a for profit business this way, they would be bankrupt!
Tessa Rushton ccsvi trials - not other MS drug related trials to clarify my above comment.
CCSVI at UBC MS Clinic - Information and Support Q: I'm miffed b/c I have no idea how to get into a study? I'm anxious b/c I'm RRMS right now.
A: Your neuro will discuss what studies are available at your annual visit.
A: Each trial will identify candidates that are suitable. Regular visits may be needed or a certain type of MS may be needed. Exclusions due to secondary conditions (e.g., pregnancy).
A: Geography is a factor. If your neuro is at a teaching hospital, you are more likely to be asked to participate. Huge lists of applicants for studies being planned in CCSVI. We don't want to choose people from just one location. It's not ethical to exclude people from treatment in a study (i.e., the control group) b/c of the Canadian healthcare system.
Shirley Renshaw You know, Dr. Murray should be tied to a wheelchair for a week then maybe he would realize why we are wanting this NOW.
CCSVI at UBC MS Clinic - Information and Support Q: Why don't people with MS have other symptoms of poor circulation?
A: We don't know what a venous obstruction does to anyone. There are no detrimental effects that we know of. People getting treated say their hands and feet are warmer, but this cannot be explained through medical science. MS IS AND ALWAYS WILL BE A NEUROLOGICAL DISEASE. We are changing how we think of MS, but it's all based on neurology (white and grey matter are now known to be involved). CCSVI is making us think of MS differently, but it needs to be tested.
Tessa Rushton hypotheses need testing - Yes, so why don't they get going with testing all the r/r ms patients who want to be involved?
Tessa Rushton I really wish Yves would stop patting the MS Society on the back... it makes me nervous!
Tessa Rushton Yay Shirley! or... be so fatigued that he is unable to do anything or think clearly & yet appear perfectly healthy in all other ways! grrr
Julie Way I've heard enough. I don't need to watch a MSS commercial.
CCSVI at UBC MS Clinic - Information and Support Q: The MS society has been aware since 2007 -- why did they not bring this up earlier? Also, who determines the criteria for the grants?
A: Through our website, info on CCSVI has been there since last October (pre-W5). Look for the medical updates on our website. Since November, we have a lot more info on our website. The most useful piece is the Q&A portion of our website. Grants will be decided by peer review using a group of 15 experts from Canada, US, and Europe who have no conflict with the studies being proposed. Studies must have relevance to MS. Board of MS Society will have the final approval for funding CCSVI research. This will happen within first 10 days of June.
Tessa Rushton unctuous political double-speak - I think I may be wasting my time watching this...?
CCSVI at UBC MS Clinic - Information and Support Q: How does the MS society feel about negative response from some regarding CCSVI?
A: we are very excited about CCSVI, but we don't put all our eggs in one basket. Debate over CCSVI is a good thing. Dr. Zamboni himself says his study may be biased and needs to be researched. When people get mobilized, this will accelerate discovery.
Kevane Bona Stronge yeah....Yves SHUT UP!!! and Jock Murray - you SHUT UP as well...you look so misinformed!!!
Tessa Rushton so Dr. Murray put all 50,000 in a trial!
CCSVI at UBC MS Clinic - Information and Support Q: I want my husband to be tested for CCSVI and treated, if possible. I want to stop progression now for him, time is of the essence. He has end stage MS. What is the MSS doing to help people who want testing and treatment now, even if we don't know if it's the cause of MS? Can't you open centres to do this?
A: I can understand your concerns. Zamboni's results showed short term benefit to RRMS people only. No benefit to SPMS or PPMS (so basically, you're up a creek lady). There are >50,000 people with MS in Canada and this can’t be dealt with at hospitals, so it can only happen in a research trial.
CCSVI at UBC MS Clinic - Information and Support Q: Michigan results will help clarify CCSVI research. Why don't you give the whole picture?
A: Buffalo results appear to contradict Dr. Zamboni's research. There's a forum scheduled for Apr 14 that will be discussing this with Dr. Zamboni on the panel. We play a balanced role in CCSVI, as we do with all issues for people living with MS. I understand people's need to know now what testing would do for them. Go to our website to find trials.
Tessa Rushton Not making it easy for us to donate directly to CCSVI are they?
CCSVI at UBC MS Clinic - Information and Support Q: I want to contribute specifically to CCSVI research?
A: yes, but you need to contact us directly to do that. If you go in the walk, your $ won't be able to be directed to CCSVI research. The walks fund important work of Chapters and Divisions, we risk drying up their funding if we open up all donations to have the option to choose CCSVI exclusively.
Tessa Rushton Ginger - just noticed your comment above. After this webcast - I'm still saving up my $$ to go to Poland
Tessa Rushton If we could find a drug to cure the venous issue I bet Dr. Murray would be all over it!
CCSVI at UBC MS Clinic - Information and Support Q: why is response so unprecedented?
A: this translates into something simple that people can understand, that's why people are so excited. Dr. Zamboni's research will not replace the autoimmune theory of MS, well, maybe the "auto" part. For the last 50 years, we don't drop one area of research and switch to another. This is just another avenue of research. CCSVI got more attention than other promising trials b/c of its simplicity and b/c it involves no drugs. CCSVI terminology drove the excitement b/c Dr. Zamboni used the word "cure," but that isn't supported by his actual results.
Shirley Renshaw Murray seems to have one answer that Dr. Zamboni said last fall. It's been a while need new answer!
CCSVI at UBC MS Clinic - Information and Support Q: How long before clinical trials start?
A: Between Canada and US societies, these proposals need to be reviewed first to make sure they follow protocols. Some researches have started the process to get ethical approval. This process is moving very quickly. Response has been tremendous -- proposals are 1 inch thick.
CCSVI at UBC MS Clinic - Information and Support Q: If I have a collapsed vein, why can't these be treated?
A: we don't know the answer. Half don't have collapsed veins and some normal people have collapsed veins.
CCSVI at UBC MS Clinic - Information and Support Q: Warming of hands and feet follows treatment -- is this an indicator that people with MS have a collapsed vein? Is there another condition outside of MS that can be treated?
A: Warming is being talked about on the Internet by treated people. Cold hands and feet are common in the public -- it's genetic. In MS, the frequency is greater b/c MS people don't use their muscles. That's why people have cold hands and purple feet. It's just an annoyance. No connection to cold hands/feet and blocked veins. If you have cold hands, you may have a warm heart (sick attempt at joke).
A: My hands may feel cold, but they are actually not.
Tessa Rushton I'm pleased Yves clarified the role of the 2% pharma funding the society gets!
CCSVI at UBC MS Clinic - Information and Support Q: what will you do with pressure from big pharma?
A: Big pharma has done a lot of work in MS research that is not necessarily linked to drugs specifically. No big pharma can influence what we do with money they give us. The bulk of our funding comes from individuals who do the walks and sell carnations. A few corporations make big contributions. I want to dispel the myth that big pharma is blocking the search for a cure or can influence our decisions. We want govt of Canada to double its commitment of public funds to all health research. Big pharma is only part of the picture.
CCSVI at UBC MS Clinic - Information and Support Q: Does MSS support testing by provincial systems?
A: we advocate for care from health care systems, but there needs to be evidence for us to do that before we say public funds should be spent. Govt will ask us for evidence if we went to them to ask for funded testing.
CCSVI at UBC MS Clinic - Information and Support Q: If I didn't have MS and a blocked vein was found, could a vascular surgeon unblock my veins or would a clinical trial need to be done?
A: None of the normals in Buffalo are probably getting their veins unblocked. We don't ordinarily look for blocked veins. If they have no symptoms or problems would not be eligible for treatment.
Shirley Renshaw Murray says: NOT NORMAL TO STUDY VEINS?????????? WTF!!!!!!!! No wonder they didn't find this first. THIS IS ALL NEW INFO TO US????????? WTF!!!!!!
CCSVI at UBC MS Clinic - Information and Support Q: Is it unethical that CCSVI is being treated right now in Europe?
A: Private clinics are setting up in a few countries (Bulgaria, Poland, India). As long as there are no legal restrictions, they can do this and a bunch of unusual therapies. Strange therapies like snake venom are available elsewhere, even though these therapies have been shown to have no value.
CCSVI at UBC MS Clinic - Information and Support Q: Have children with MS been tested for CCSVI?
A: Children with MS being researched in Canada; we don't know anything about children and CCSVI.
CCSVI at UBC MS Clinic - Information and Support Q: Re: research competition. Is there a next phase of research competition that will be better funded? Will the patient voice be on a panel of experts evaluating proposals?
A: We don't know about subsequent funding yet. We need researchers to drive this process. Larger funded studies need building blocks of prior research. Everything depends on which studies will be best science. Patient voice is important -- we just started engaging a patient to bring perspective to expert review. Because we did the CCSVI funded proposals in such a hurry, we ignored having a patient at the table.
A: There seems to be a sense from patients that the funds we allocated are a limiting factor. The researchers don't think this way.
CCSVI at UBC MS Clinic - Information and Support Q: One year from now -- where will we be?
A: we will have studies underway. This is a story about the power of the internet. I celebrate that. Facebook and other forms of communication that made us act quickly is very exciting.
A: we will have more information in a year -- how many people have CCSVI and start to have preliminary results from clinical trials. Listen to AAN meeting taking place in Toronto soon. Things will be calmer and clearer, but we still won't know the long term benefit of CCSVI treatment as an effective therapy.
CCSVI at UBC MS Clinic - Information and Support Q: will CCSVI benefit different types of MS?
A: only benefits RRMS according to Dr. Zamboni and the veins must stay open.
CCSVI at UBC MS Clinic - Information and Support Q: Why was there no effects on SPMS and PPMS?
A: we have found this before -- has to do with extent of nerve damage over many years. That is speculation though. It doesn't mean benefit can't occur -- we have seen drugs that can help people with Parkinson's. A new medication shows benefits for people with PPMS and walking (can't spell drug name).
CCSVI at UBC MS Clinic - Information and Support A: My sister has been tested for CCSVI in Buffalo; no stenosis was found. How much can we trust the tests for CCSVI and where can we go to get iron in the brain measured?
Q: Iron testing requires a specialized MRI. That research has been underway for some time. I don't know if it's available in Canada.
CCSVI at UBC MS Clinic - Information and Support Now they are patting themselves on the back. Yves, this is an "interesting time." New therapies are being developed. People with MS are mobilized, they are on Facebook! Our role as a Society has been affected by this in order to invest your money in good science.
Tessa Rushton hmm... that was 2 hours of my life I'll never get back! It'll be interesting to see the spin on the news tonight!
Teresa Hauser McGough Did everyone get the fact that they said this was beneficial for RRMS, but that they still won't do anything constructive towards possibly saving these people NOW, and that in a year they hope to have a few more answers!?! Geez, that equates to letting people rot away and they don't care about anything except keeping their donations coming in and the money flowing..... holy horse dung....that stinks.
National CCSVI Society: <strong><br /><a href="http://tinyurl.com/44znbct">http://tinyurl.com/44znbct</a> ~Website<br /><a href="http://tinyurl.com/3wzmkmg">http://tinyurl.com/3wzmkmg</a> ~Facebook</strong><br />