Yesterday at the MS walk, our group was given a tent, tables and chairs by the MSS Walk coordinators. We certainly did not expect that and we we were grateful. The hours flew by as Elmer, Marti, Tessa, Stuart, Gerry and I manned the tent and talked to interested folks and passed out CCSVI literature. (Apparently I missed Bernie as he was there in the AM to hand out helium balloons but was told balloons were not allowed on the island because of health hazzard to the geese.) It was awesome timing on CTV's part the night before the walk to run that news segment on CCSVI as it was on just about everybody's lips that morning!
For many years a lot of us actually supported the walk by donating money or gathering donations and completing the walk. This year was a bit different. Since I first heard of CCSVI back in November 2009, the Canadian MS Society has been poo-pooing the theory and refusing to adequately fund research for it or lobby the government on behalf of MS patients to scan and treat us now on a compassionate basis. Every news article and TV show about CCSVI that the MSS has been a part of has been full of negativity and comments likening CCSVI to snake oil cures. I have been actively boycotting the MS Walks in Canada this year because I have been so disgusted with the societies loss of vision.
On May 5 when folks all across Canada marched for CCSVI Awareness Yves Savoie, President of the National MSS addressed Parliament, supposedly on our behalf and asked for ten million dollars for research. I was furious as I felt that the MSS used our blood, sweat and tears to leverage funds from the government when all along they have NEVER supported CCSVI. What were they REALLY going to do with this money?? Currently news reports are talking about a rift within the MSS during board member elections. Some of their members feel threatened by MSS members who seem to be pro CCSVI and they want them drummed off the board. CLICK HERE.
During yesterdays event a couple of the MSS folks stopped by our tent and chatted with us. They said that they wanted the same things as we did and that we were all on the same side. I asked one gal, Ms. Wong, to clarify what she meant by this statement. She said that the MSS supports MS patients being allowed to be scanned and treated concurrently with ongoing research to find a link between CCSVI and MS. I was certainly surprised to hear this. I asked her if she was aware that AHS's statement of criteria regarding CCSVI treatment had been fulfilled and so now AHS should be moving forward to get approval for the angioplasty treatment in Canada. Wong said that that was up to AHS. I told her that AHS was waiting for the MSS to give them the green light before they proceeded. If the MSS is really pro CCSVI now, they need to get together with AHS and recommend that AHS take the next step and submit this treatment to the province's health technology assessment process so that it can be introduced as a new procedure and put into practice.
Alberta Health Services Position
1. At this time, it is only a hypothesis that CCSVI contributes to, or causes, Multiple Sclerosis, and that venous angioplasty is clinically beneficial.
(The current popular understanding of MS being a brain disorder and auto immune disease is just a theory also. This point is irrelevant!)
2. Further, independent and controlled studies are required to prove, discount, or better understand Dr. Zamboni’s study results.
(How many studies are required? Buffalo is doing ongoing research and their preliminary findings are more than adequate to establish a strong link between blocked veins and MS patients.)
3. The nature and frequency of the risks on venous angioplasty are not yet fully understood.
(This is a complete lie. Angioplasties are being done every single day and have been performed for many years. The odds of dying from any type of angioplasty is 1 in 1000. A perfectly acceptable number in the field of medicine.)
Without a clear indication that venous angioplasty carries a clinical benefit that outweighs the risks, it cannot yet be supported as standard practice.(The risk of angioplasty is so minute and the anecdotal evidence of benefits is overwhelming)
4. At present, there is no proven indication for venous imaging or venous angioplasty in patients with Multiple Sclerosis. Therefore, unless part of an approved research protocol, these procedures will not be provided by AHS to persons with MS.
(This is a ridiculous statement. Whether a person has MS or not, if they have blocked veins from the central nervous system that is a bad thing! They need medical intervention ASAP!) Kidney dialysis patients suffer from collapsed jugulars and are treated with the same balloon angioplasty treatment that we want for MS patients. Many countries like, Kuwait, Australia, India, Poland and Bulgaria have seen enough of an indication to warrant treating their citizens on a compassionate basis.)
5. If, and when, there is independent scientific validation of Dr Zamboni’s results, Alberta Health Services will seek approval from Alberta Health and Wellness, under the province’s health technology assessment process (described at
http://www.health.alberta.ca/initiatives/AHTDP.html), to introduce the new procedure into practice in Alberta.
(This is irrelevant. Blocked veins are bad! If they weren't a health risk why do Dr's bother to open the collapsed internal jugular veins of kidney dialysis patients? Clearly this is an extremely hypocritical statement and an example of the gross injustice and discrimination being carried out against MS sufferers in Canada.
If the MS Society is truly on board with CCSVI now, I would like to see some positive actions on their part. They owe the MS suffers of Canada some answers and a huge apology.
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Sooooo ..... there is CCSVI related with kidney dialysis patients? What? They have collapsed jugulars too? Do they get the same treatment that we should get? Never knew this. I was under the impression there was no such thing as collapsed jugular until CCSVI came along (I know century before that). Or am I misunderstanding? WOW, need more info on this!! Thanx Ginger :)
ReplyDelete@Shirley-YES. Kidney dialysis patients suffer from collapsing jugulars due to their treatments for their kidneys. Dr's feel that it is enough of a health risk to the kidney patients to have collapsed jugs, so they angio them. I guess it's not that big of a risk to an MS patient to have collapsed jugs though??
ReplyDeleteFYI - The MS Society doesn't (and can't, because they are not doctors) advise AHS on anything. The MS Society raises money to fund research and help people with with MS through advocacy and client services...they aren't medical advisors to provicial health boards/departments. I'm not sure where you heard that AHS was waiting for the MS Society to do anything...it's up to AHS and their doctors/researchers or what have you to determine when they will fund this procedure provincially.
ReplyDeleteHi Emily- Folks I have talked to numerous times at AHS have all said that "since the MSS is not behind CCSVI.."
ReplyDeleteSO maybe (EMILY) if you happen to know someone at the MSS who can perhaps publicly state that the MSS is behind CCSVI now, the AHS will feel that they can go ahead and move on this. PS I just sent letter to AHS and Minister of Health addressing this issue just in case the MSS doesn't get around to letting this particular cat out of the bag. Not that I'm skeptical...
Ginger - Perhaps AHS is just saying that to cover their own butt? The MS Society is whole-heartedly behind research from the people I know who work there/volunteer there. Granted, these people aren't the CEO's or anything, but still. They WANT more money to be directed towards CCSVI (the $200,000 over two years was an emergency funding measure because the regular granting period had just passed) and that likely will happen come October (when research grants are awarded/revealed). They also don't want to ignore other possible avenues of research - it's never wise to have all your eggs in one basket, after all (no matter how attractive one basket may be). The MS Society just wants more research to be done, which I believe AHS desires as well, but at the end of the day the MS Society is a charity - they don't have the resources or power to advise on anything medically other than echoing what doctors in the field are saying (which even Zamboni, the patron saint of CCSVI, seems to be saying "we need more research"). It just seems like the answer is research, and it is being expedited as much as possible, but there is still a certain scientific method that has to be followed to keep the medical community on board (that's just reality, and has nothing to do with the MS Society). You make it sound as if the MS Society is being sneaky and telling AHS not to go ahead with this; in effect, blocking CCSVI. That just isn't true and the sensationalism around this issue only means that people are emotional (rightly so) and will believe these things even though they aren't entirely true. That isn't fair to the good people who work and volunteer with the Society.
ReplyDeleteDoesn't it make more sense to all work together in this? At the end of the day we all make more friends and more progress when we can stop the negativity and antagonism and realize that at the end of the day we all want the same things - that we can find a cause and hopefully a cure for MS.
Emily-If you read AHS Position on MS above, you will see that the criterion has been fulfilled. Whether the MSS admits it or not they have become by default, the "go to group" when it comes to all things MS. I can't believe that you or anyone else affiliated with the MSS was not aware of the power you wield. Every imaging clinic I spoke with in Calgary after November's CTV/W5 show said that they were waiting to hear from the MSS that they were on board with the theory before they decided to scan MS patients for CCSVI. By the MSS negative stance and naysaying members talking to the media YOU (the MSS) HAVE EFFECTIVELY BLOCKED CCSVI. Now is the time for the MSS to make things right by moving forward and publicly embracing CCSVI.
ReplyDeleteI am ALL for working together Emily. That is why I wrote this particular post. The ball is in the MSS court now. You (the MSS) have talked the talk, now walk the walk and prove to me and everyone else that this isn't just face saving gestures on the MSS part and I will gladly embrace the MSS and shout from the towers that we are all friends again and have one common goal.
PS Zamboni is saying more research is needed, (I am not arguing that), but he he has also said that MS patients who are extremely ill should be treated ASAP on a compassionate basis.
Ginger - First of all, I'm not the MS Society. I know a few people who work there, and many more who volunteer (I have volunteered myself on occasion a few years ago). I happen to support them and not believe all the hyperbole that they are awful people blocking this procedure (purposely or not). Did they do things wrong? Absolutely - the initial reaction in November was not what anyone would have wanted. As someone familiar with PR it was basically a PR disaster....and then it snowballed. False infomation flew around and suddenly the MS Society is in the pocket of Big Pharma and wants MS patients to suffer (note: I am not saying you said this, I just heard this bantered about in the last 6 months or so). I just think it is unwise for any charity to effectively encourage people do seek a treatment that doesn't have the research to back it up yet (in relation to MS patients, that is). What if it's proven in a few years through research that re-stenosis rates are exceedingly high and there is actually a better procedure that prevents this but people who've had the first procedure can't get this? Imagine the uproar! I am not saying this will happen, I just use it to illustrate the necessity of research. If the MS Society said they were wholeheartedly behind CCSVI and a few years from now people who've had this procedure have set backs, where is the MSS now? Are they being blamed for backing a procedure too early? Jumping the gun? They have a responsibility to people with MS and their donors to use research money wisely and to temper enthusiam with caution. I think caution was confused for contempt when CCSVI initially made headlines.
ReplyDeleteHey Emily. No worries. Everyone is welcome to their opinions. I DO believe there is a connection between Big Pharma and the MSS.Follow the money honey. They made HUGE blunders in the beginning and continued to do so time and time again.Make no mistake: There is a monumental difference between optimistic caution and outright disdain. The whole reason for the formation of the MSS was to help and support MS patients and their families. When CTV/W5 ran their show in November the MSS already knew about CCSVI but hadn't posted anything on their web sites or news letters. Patients started calling them for information and in many cases were made to feel like idiots for calling and inquiring about it. When the media contacted MSS reps they made it clear that they held CCSVI in contempt. My currently low opinion of the MSS is based on these actions.This is what I know. This is what I have experienced. Had you been in the trenches along side me from the beginning you would probably feel the same way. Take note that i had no quarrel with the MSS pre CCSVI. I too made donations and did the walks. I have said it many times and will say it many more until the MSS proves me wrong. I will state this again: If the MSS really wants to support CCSVI now, like Ms. Wong stated to me on the day of the walk, I am skeptical but optimistic. Once I start seeing positive actions on the MSS's part I will turn the other cheek. The ball is in the MSS's court now.
ReplyDeleteI agree that the MSS probably did not wish to be seen to be against CCSVI, but I also think that unknown to them (The MSS) they had probably been groomed by the drug Rep's. as they were a perfect tool or 'vehicle' to push their product at a certain community, namely MS'ers. I think the sooner they show the public that that was never the case, and move forwards. Only then can everyone be friends or allies again.
ReplyDeleteIt still comes down to time frames for many of us. I approve of the research also but NOT at a rate of 2+ years down the line...My first power scooter was just delivered to my door and I am PISSED off... Just shut up and let us be tested and then we can all put our heads together and take it from there...but for now get out of my way and let me get this done! I don't need anyone but my family and my own good sense to make the decision of how, where and why to do this. i am only getting worse daily and you are all costing me mobility!!!
ReplyDeleteOK now the gloves are off.
ReplyDeleteAs far as I am concerned even though the MSS feel that CCSVI is their territory IT IS NOT. It belongs to the Vascular community and that is where CCSVI belongs too. My collapsed veins has NOTHING to do with MS. The ONLY REASON the MSS is involved is because they DO NOT WANT us to have them treated like diabetic patients do. (Thank you so much on the information BTW Ginger!) As long as the MSS keeps this crap up they will have people with MS. They have NO RIGHT to roadblock CCSVI treatment. If they had acknowledged this theory when Dr. Schelling and Dr. Swank introduced it FOR SURE we would not be wasting our time on this now. The MSS has become so redundant with their research and testing mantra it has become a mute point and I no longer feel they have any credibility. Therefore, give it up and leave our choices to us. The MSS has no stake in this except keeping us in unnecessary misery. This has now become a turf war and I will not be part of that game. Leave us alone and do whatever you have been doing on your researches or whatever other BS you do. The MSS has done NOTHING in the past 40 years for MS and now we find out the DMDs scheme is a fiasco too. You know Ginger I think you have used your precious time on another nay sayer (probably hired by the MSS). Cynical? Me? You freaking bet'cha!
Oh, and LaVonne HEAR, HEAR!!!
Same to you Shirley! Well written!
ReplyDeleteThat's fine Shirley...if collapsed veins have nothing to do with MS then why is everyone mad at the MS Society? They should have nothing to do with it and perhaps everyone in the world should be tested for collapsed veins to ensure they don't have them either because it is a big health concern. It can't be both ways: the MSS can't be evil and unsupportive if it has nothing to do with it. I am not a naysayer - it sucks that anyone who supports the MSS or has a different opinion on the issue is assumed to be against CCSVI. I am not. I have a very close friend with MS. Do I want her cured? Of course I do, who wouldn't? Am I still allowed to be cautious and make up my own mind and have my own opinion - I think so. It isn't fair to assume that I'm some paid naysayer. Please.
ReplyDeleteGinger - The MSS receives something like 2% of their yearly income/monies from pharmaceutical companies and NONE of this goes to research (it funds conferences and stuff, from what I've heard). This is pretty much public knowledge and availble in their yearly reports or tax returns I'm sure. Do you have any evidence to the contrary (that they are in the pocket of Big Pharma and rely much more heavily on their money? If so I'd like to see it). I appreciate this discussion Ginger, I think it is important to talk about things and work together and not be antagonistic like others are being and have been in the past. Another point: one of my friends I spoke of who works for the MSS mentioned that after the W5 program aired they did receive a lot of calls - so much so that it was daunting. That's fine, it is their job. But it is not their job to be yelled and insulted, these are good hardworking people who were insulted over the phone. Is that right? No, so perhaps that's why these people got a little frustrated? My own friend was called names I wouldn't call my worst enemy! All because the MSS allegedly was blocking this procedure (not true - they have never said to ANY clinic/government don't do it).
Anyway, I am going to stop responding as it doesn't matter what I say - apparently I am a hired gun. Cheers and good luck to all of you, I truly hope you are all well in the near future and find the cure we all want.
Best hired gun in the West Ginger! We're behind you all the way. Heated debates drain me, especially when the logic goes out the window and you were smart to stop posting. Ears and knowledge are somehow lacking - sort of like Question Period!
ReplyDeleteHi Ginger, I think this was a really good post. And for some of the commenters, Wow. Some people don't know what it feels like to be fighting for something that can make their lives a whole lot better. It seems there are people out there who just want fight to prove they are right about anything, not just about this topic. And when they can't win, they QIUT fighting. Well they haven't tried fighting people like us. We're not going to quit fighting because a naysayer doesn't agree with us. Thats cool, they can post their comment, but why do they keep pushing? because they want you to say, "ok you're right." Well I didn't do anything to deserve 18 years of hell with ms, I'm pretty sure noone with ms has. I think people who have nothing to do with MS or CCSVI should get out of our way. There are a lot of birds that are covered in oil that could use some help. I want this treatment because nothing else has helped and ccsvi is the only thing that makes sense. And Ginger, I'm glad that you still continue to fight for the rest of us. Thank you, shawn
ReplyDeleteThanks guys. You are so correct Shawn about CCSVI being the only treatment with any promise that we have so far come across. The one comment from Emily, as she was justifying why the MSS has given very little money for CCSVI research, about "not putting all of the eggs in one basket" is ludicrous in this case. All the so called "other baskets" are full of useless and often toxic and deadly DRUGS that have given very few folks any relief. Yet Emily thinks we should just allow the millions of dollars that could be channeled to CCSVI to be given to other avenues that have yielded little to no hope. Here we have basket #1 called CCSVI. Let's see, close to 1000 folks have been liberated around the world by now and the results are amazing! Hmmm. Oh, and here is basket #2 full of all kinds of DRUGS, FAIL!!!
ReplyDeleteBasket #3 is a study on stem cell research by Dr. Freedman. Oh wait! Whoopsie! One person already lost their life in that study! YIKES!! But hey, let's keep throwing millions into it because we all know that ablating one's immune system is definitely the way to go! FAIL!!!
So how can we NOT put all OUR eggs in the CCSVI basket? It is the only treatment so far, that has showed so much promise to so many people.
Emily, who does not work for the MSS, makes a lot of defense for the MSS's bad attitude.
ReplyDeleteEmily's only argument against CCSVI is that the angioplasty MIGHT create a problem in the future! WEAK argument! Angioplastys have been done for years - what problems have they created?
John B.
Does Emily even have MS? She mentioned a friend has it, big deal. This is not her fight.
ReplyDeleteEmily, Just by your wording confirms that you are not on the same page as me. First of all...people who keep referring CCSVI as a CURE are obviously cynical. IT HAS NEVER BEEN CALLED A CURE. This has been touted by nay sayers and the press. As far as I am concerned I want nothing to do with the MSS and this has been since November 22/09 when I made that idiotic phone call to my neuro. Oh my God we were enquiring about something that the MSS was already aware of. They were hoping that the weakest would just give up and go away. WRONG. The only abuse given to the unfortunate person taking our calls was by the MSS themselves because they once again dropped the ball and let their staff take the abuse. Right then and there it confirmed that this was going to be a battle FOR MY RIGHTS AND MY LIFE. The ONLY reason I have to include the MSS is they DO have the resources and they should AT LEAST assist us in JUST TESTING. THAT IS ALL WE WANTED. The funding is minimal for testing and should have been given from the get go. Why the refusal? It is and now 7-8 months later the results are overwhelming and YES the testing theory is TRUE. It's too bad the MSS is losing and more likely has lost credibility and are still keeping their heads in the sand TO THIS DAY.
ReplyDeleteYES the MSS should have nothing to do with the practise of CCSVI and should stay out of this. I FOR SURE do not want to deal with someone who does not want to help me. I really would be afraid if I had to deal with Dr. Freeman. Because of his thinking my best interest WOULD NOT BE his best interest! If he gets the grant I would be obligated to go to the press and put a mass warning to be extremely cautious if dealing with the MSS. I have no right to stop anyone but I feel I have an ethical obligation to put it out there.
Emily, your comment on everybody should get tested for CCSVI is a comment I agree with!!! May I suggest for the present time people who HAVE CCSVI that FOR SURE blood tied family members should get tested. Hey, that’s what we want. Good one on ya!! I can’t figure this being BOTH WAYS but what the heck…so be it!!
Being a nay sayer involves the language used such as…..CURE and your statement like this…
.”..if collapsed veins have nothing to do with MS then why is everyone mad at the MS Society? They should have nothing to do with it and perhaps everyone in the world should be tested for collapsed veins to ensure they don't have them either because it is a big health concern.”
OF COURSE IT IS A BIG HEALTH CONCERN. Geeeeeeez………….. AND yes your opinion counts BUT so does mine. Glad to read you are not being paid for your comment …..I was concerned about that one!
She is absolutely right in so far as the MSS doesn't have the right to recommend or deny this to us...so if that being so why do they spend so much time and energy doing all they can to block us?? It is by their own words none of their business...so back off. Be happy for those who have had positive results from their treatments. Show that the MSS really does care about us...? That is why we don't rely on them for this treatment...we want to be "allowed" to go to the professionals in this area...FSIR's
ReplyDeleteAs apparently I'm being ridiculed for having an opinion that is different to everyone's here I chose to respond to defend myself from this. I realize I am not in the trenches fighting like people with MS, and I am thankful for my health in that area. But because I don't have personal experience with it this means I can't have an opinion on it? My good friend with MS feels the same way - she is disgusted at the misinformation floating around about the MSS and feels that yes, while the top brass could and should be doing more, that they aren't an evil organization that they have been painted as. Paradigm shifts take time, it is hard to be patient but it will come, liklely sooner rather than later. The MSS is, as far as I can see, not really spending any energy denying MSers this treatment - they are just saying they want more research and governments and health boards are the ones "denying" it. Patients are welcome to go to a private clinic and get the tests (at a cost, I'm sure, and this is where patients get upset. But governments are responsible for everyone's money and they have to be responsible with it and cross all their t's and dot the i's. This involves at least a small study, I'm sure, to access the risks and benefits).
ReplyDeleteIt's a little sad that anyone with a different opinion, who as been more than respectful here (I don't think I've said anything insulting or mean-spirited to any of you) is brushed off - there is no debate, anyone who doesn't agree with you is wrong and ridiculed as a paid spy. No wonder people don't want to work with you at the MSS - there is no conversation to be had with anyone who has a slightly different opinion (that the MSS isn't evil - that is my only opinion, I am all for testing, treatment, everything to get everyone with MS better!). The opinion the MSS has is that more research should be done (and quickly). It's just different, not wrong, no matter how much you want to think it is wrong.
Ginger - What about patients who have already had irreversable damage. Isn't it worthwhile to continue to research possibilities for reversing some of this damage? I don't know but I'm sure there are other promising avenues of research that haven't the star power of CCSVI (I don't know this for a fact, but much of medical research has gone on without our notice...I'm sure it still is).
I just wanted to correct some of the lies (yes, lies) I've heard here, Ginger. Please stop saying the MSS is in the pocket of Big Pharma. There is no "money honey" other than the 2% I quoted you. If you're curious and care at all about getting it right you'll look it up. The MSS also isn't blocking any treatment. So there, please stop going around saying they are, it's irresponsible to spread lies (just like the press is spreading lies about CCSVI? Ya'll get pretty upset about that, but it's okay to do it the other way around? Interesting).
Take care and best of luck to all of you. I want CCSVI to be the answer and I want everyone to work together as much as all of you. I hope that Alberta/Canada can offer this treatment here at home very soon, just as you all do.
Emily,
ReplyDeleteMy wife had the liberation treatment 3 weeks ago. She is feeling much better now and improves daily.
@Emily-This is a public forum and everyone, including you are entitled to post your opinion. I appreciate that you took the time to respond to my blog. I am aware of the 2% funding by Big Pharma that is claimed on the books of the MSS.
ReplyDeleteSpeaking of lies-what irreversible damage are you talking about? I know there has been many deaths sickness related to the MS drugs we have been prescribed over the years.
The point is Emily-CCSVI treatment is the BEST THING WE HAVE. ITS THE BEST WE THING WE HAVE EVER HAD. IF THIS WOULD HAVE COME TO THE PUBLIC YEARS AGO JUST THINK HOW MANY PEOPLE WOULD STILL BE ALIVE!!!!!
Next time you should think before leaping into the lions den if you are afraid of opposition
Ginger - The 2% isn't just "claimed on the books". From what I know, the MSS like any registered charity is audited extensively every year by a third party (not sure who), it seems like 2% is really just 2%, no secret funding schemes going on here (really, I like a good conspiracy theory as much as the next guy, but come on...at least in this instance it really just is 2%).
ReplyDeleteWhen speaking of irreversible damage I was speaking to damage already done to myelin and nerves (I know some MS patients with zero mobility, they are in effect paralyzed and can barely speak or feed themselves. I am not sure if CCSVI treatment would help them walk or improve much or if too much nerve damage has already occured to make something like that possible. Would it not be lovely if CCSVI could help patients who have yet to suffer extensive damage and researchers discovered some other treatment to help repair nerve damage? Then MS would really be history). I wasn't speaking to drugs or any other treatments at all. I was not arguing that CCSVI isn't amazing and isn't great and shouldn't be pursued whole-heartedly. Indeed I believe I'v said many times that I think it should be! I was speaking to your position on the MSS which of course you're entitled to...I just wish it wasn't based on false assumptions. I am not afraid of opposition, that's a corner stone of any good debate or discussion. It's disheartening to read that I'm not even allowed an opinion on the issue because some people assume I am not personally affected by it, or that I am a hired gun of some "enemy" because I have a different opinion - that isn't a good discussion or debate.
As I've said...good luck to everyone and I wish you continued improvements, Ginger. I hope that in the near future we can all be on the same side.
Cheers
Thank you, Ginger, and all of you who inspire logic and reason in a sea of embarrassing answers from the medical community and MSS – and well, sorry Emily, but you, too. With the former, however, it is hard not to feel that there is a bigger agenda at work. (Of course, there is, but to what extent may be debatable) With the latter, it’s understandable. For those who are on the front lines of this, they have tuned in to every bit of research, every article, every television program, every blog/post – anything, that can help them better understand the issue and the risk/reward. I am a daughter of a woman diagnosed with secondary progressive MS. As the familial connection in this disease begins to rear its ugly head, the impetus to be truly informed takes on a new vigor. For this reason, I wish the medical community, MSS, politicians and all of the Emily(s) of the world would please respect that in many cases MS sufferers are much better able to speak to these issues than physicians, neurologists and certainly other lay people. Make no mistake, CCSVI threatens the future of many in the medical community, MSS, not to mention untold billions for drug companies. (also, if I were a politician I would want to get on the right side of this issue, fast) Thanks to the Internet, MS sufferers no longer have to accept that they are patients (receivers of medical care), but rather medical consumers. The difference? Power. Our family has also boycotted the MS Walk and we are signing up to vote for the new MSS board. We are talking with politicians and anyone who will listen. Why? Because we've resarched the heck out of this and understand the issues as well as any "authority" on the subject. This whole argument reminds me of the Vitamin D story. Ten years ago, a small army of well-researched smart people started to tell the story of the dangers of vitamin D deficiency. The "powers that be" argued that they could not sanction increased Vitamin D useage until it could be proven that Vitamin D sufficiency was better than Vitamin D deficiency. In 2010 they are still waging that battle with only minor results with the medical community. (this, too, compromises Big Pharma as Vitamin D is safe and cheap - but my main point is the lack of logic) Today, MS sufferers are told that CCSVI is on hold until it can be proven that unrestricted blood flow to the brain is better than restricted blood flow. Seriously??? Where is the common sense? Thanks to all of you on the front lines across Canada and beyond. The fight can be won and will be as long as CCSVI supporters refuse to back down. The anecdotal evidence is beyond overwhelming and it continues to grow (check out the Saskatoon Star Phoenix this morning: www.thestarphoenix.com 2 stories: one from Rosetown, the other about a family named Walsh) -- When Zamboni gets the Nobel Prize for Medicine, I hope Ginger gets the Order of Canada! Thank you for everything you are doing to help out others, and I wish you continued success in your own recovery! Please let me know if there is anything I can do to help.
ReplyDeleteThe more I read of Emily's words, the more I think she is a secret employee of the MSS. Emily reminds me of the Member of Parliament who recently(when the feces hit the fan) had staff and relative(s) write complimentary letters about her.
ReplyDeleteAnd I'm also skeptical that Emily has an MS friend who agrees with her position. Everyone with MS wants more safe angioplastys done quickly to help prove or disprove CCSVI!
The evidence so far indicates CCSVI is beneficial for MS'ers in the early stages. So why is the MSS still stonewalling?
Emily, "methinks thou protests too loudly".
John B.
2% of billions is still quite a haul and what about the "little" perks to the neuro's for prescribing the DMD's? You can yell all you want I know there are incentives made to individuals for prescribing them...if you truly don't believe so then you are naive. Even my PC knows this. I also have friends in the pharma industry...you know, the ones who come in with their bags of goodies...samples, who go right straight back to the Doc, while the rest of us sit in waiting room wondering what is taking so long to get in to see our docs?
ReplyDelete@Emily: regarding this: "What about patients who have already had irreversable damage. Isn't it worthwhile to continue to research possibilities for reversing some of this damage?."
ReplyDeleteHow do we know what is irreversible? Before Ginger's treatment she couldn't feel some of her fingers and her feet. Was that irreversible damage or just continued oxygen deprivation to her brain? Only once the surgery was done and she saw the physiotherapist was it determined that she didn't have any permanent damage. Should we have treated her as if she did have permanent damage and do things like kill off her immune system? Give her dangerous drugs like Tysabri?
Why would we do anything like that until we are sure what is permanent and what is temporary?
What is certain now is that her body has a chance to recover on its own while no longer fighting whatever you want to call it that she had before the surgery. Who knows what the long term affects of removing this condition will be. Maybe more of those people considered to have permanent damage will continue to improve despite the claims of their neurologists. Let's give them a chance to do so because this is the only 'basket' that has shown to do anything like this.
I don't understand why Emily would spend so much time and effort to respond to a person's with MS personal blog. She said that she is not an employee of the MSS and has only volunteered there. She does not have MS but has a friend with MS. I used to volunteer at a battered women's shelter but the last thing I would do is search out one of their personal blogs and begin stating my opinions. There are alternative cancer treatments out there that I may not agree with but I would never think about going into a forum shared by sick people and argue with them because I feel I have a right to my opinion.
ReplyDeleteIt's not so simple. I would like to know Emily's occupation. Yes, the lady "doth protest too much".
I just want to make two typo corrections in my last comment...I want to replace 'diabetic' with dialysis and I called the MSS on November 23rd not the '22nd'. I want to also say more but all the comments here Ginger have said it all! And them some!! Thanx for being here Ginger. XOXO
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