This Is MS Multiple Sclerosis Knowledge & Support Community

1eye wrote:This the same Dr. Murray who said to a parliamentary subcommittee that if everyone was Liberated no one would go in a trial?

I think so ... in any event, I remember hearing that totally unethical statement, which betrays his bias for unnecessary human medical testing to continue even after it becomes clear that the procedure is safe and beneficial. Once it is shown safe and beneficial, the treatment should become standard of care immediately (especially for people with progression forms of MS for whom there is no standard treatment option), and thereafter blinded clinical trials are unethical.

It was also absolutely ridiculous for him to suggest that everyone could even get treated within the time period which should be required to run a trial; or that the only valid trials are blinded trials. An unblinded treatment trial may include placebo bias, but so does life; and life needs to go on more so than academic inquiry.

Yes, that is the same neurologist in both cases.

Nicknewf, in two separate meetings, a few of us pleaded with the MSSC to advocate for immediate CCSVI testing and treatment on compassionate grounds - for MSers in further stages of the disease for whom there is no other treatment options. Of course, for MSers in these further stages who want to be tested and treated - like some of the MSers we personally know.

The MSSC people were unmoved when we reminded them these patients may get worse, may die while years are spent on further research and studies. We acknowledged the need for more research and studies, but implored them to advocate for these patients' immediate need on compassionate grounds.

The repeated response was - more research is needed, as if the MSSC is so well-versed in analyzing and validating research of any kind. Their repeated references to the Buffalo study and even the German study, in a bid to discredit Dr. Zamboni's findings even though both the B & the G studies didn't follow Dr. Z's protocol, proves otherwise.

The MSSC people actually said, how could they go to the government and advocate when they have no evidence. We mentioned the many MSers(even Canadians) who had already gone abroad and returned with improvements following treatment. They said...placebo...anecdotal evidence. We asked at what number does anecdoctal count? The answer from one was - can't answer that question, don't have a background in research.

Incidentally, we now know there are many questions about the treatment options currently available and being prescribed to MSers and none of the CCSVI naysayers are rushing to prevent this.

nicknewf wrote: An unblinded treatment trial may include placebo bias, but so does life; and life needs to go on more so than academic inquiry.

Nicknewf..you've said so much with so little..

Nicknewf, please post this very powerful statement of yours on the MSSC Facebook site and other CCSVI Facebook sites.

I read your message as a whole, but seeing this statement on its own as PCakes posted it above just touched my heart, and it keeps repeating in my mind. I'm sure it will have the same effect on everyone who reads it, including any naysayers.

Chrystal wrote:...a few of us pleaded with the MSSC to advocate for immediate CCSVI testing and treatment on compassionate grounds - for MSers in further stages of the disease for whom there is no other treatment options.

... for the life of me i just do not understand how they can deny this..morally, legally but mostly as people.

PCakes wrote:

Chrystal wrote:...a few of us pleaded with the MSSC to advocate for immediate CCSVI testing and treatment on compassionate grounds - for MSers in further stages of the disease for whom there is no other treatment options.

... for the life of me i just do not understand how they can deny this..morally, legally but mostly as people.

PCakes, I really do not understand it either. Don't they have a conscience?

PCakes wrote:

Chrystal wrote:...a few of us pleaded with the MSSC to advocate for immediate CCSVI testing and treatment on compassionate grounds - for MSers in further stages of the disease for whom there is no other treatment options.

... for the life of me i just do not understand how they can deny this..morally, legally but mostly as people.

It is awful.

I think the Barb Farrell "anecdote" should be enough, for people with no other treatment options, to at least get a chance.

I am still upset about the death of the woman (Ms. Wehmeyer) who posted in Dr. Sclafani's thread, who wanted this treatment, but who ended up in the hospital and passing away in May. She had spent over six months trying to find treatment.

Chrystal, thank you for your advocacy on everyone's behalf but especially on those who are at the highest levels of disability.

Cece wrote:

PCakes wrote:

Chrystal wrote:...a few of us pleaded with the MSSC to advocate for immediate CCSVI testing and treatment on compassionate grounds - for MSers in further stages of the disease for whom there is no other treatment options.

... for the life of me i just do not understand how they can deny this..morally, legally but mostly as people.

It is awful.

I think the Barb Farrell "anecdote" should be enough, for people with no other treatment options, to at least get a chance.

I am still upset about the death of the woman (Ms. Wehmeyer) who posted in Dr. Sclafani's thread, who wanted this treatment, but who ended up in the hospital and passing away in May. She had spent over six months trying to find treatment.

Chrystal, thank you for your advocacy on everyone's behalf but especially on those who are at the highest levels of disability.

Cece & others,

Such deliberate acts don't go unpunished. It may sound a little unfashionable these days but there is almighty who is watching everything ...

Cece, I am humbled by your thanks, but you and many others have done soooo much more in this fight, and I could never thank any of you enough. We are all fighting and none of us will stop doing so - most especially on behalf of those who are not able to fight.

What truly boggles my mind is the fact that the MSSC was the first out the door, after the November 2009 W5 CCSVI piece, to claim our vascular condition as their territory...and yet they keep also saying that evidence is needed to establish a link between MS and CCSVI before further studies can be done to establish whether treatment of CCSVI will have any improvement on MS.

So the move to claim CCSVI from the get-go - was it just to stall any actual testing and treatment of MSers for this condition?

SBR487, these are deliberate acts, aren't they? I feel now that every step taken/not taken by the MSSC has been a deliberate and calculated step with a specific agenda in mind.

good morning,

'msfitz' Wehmeyer ..there was an outpouring of emotion, sadness and anger, here on TiMS. Where were the ms societies? Is it not their primary objective to advocate for the ms population? am I simple? If someone is dying, as our advocates, should they not step in and take the fight for life to the next level?

Today a woman from Canada, forced to travel out of the country at great personal expense, will be treated. She had declined quickly and had exhausted all other 'allowed' avenues. Her own doctor stood over her in the hospital and advised "there is nothing more that we can do". Prayers go with. I will post the results. But, again I say.. where are our advocates? where is the MSSC?

Chrystal wrote: SBR487, these are deliberate acts, aren't they? I feel now that every step taken/not taken by the MSSC has been a deliberate and calculated step with a specific agenda in mind.

Very much, Chrystal. There are two kind of people here -
1) one who have deep conviction that ccsvi does not make sense, for whatever reason. That is a matter of viewpoint. I respect that.
2) people who dont care whether ccsvi makes sense or not (or know it does). They oppose it for ulterior motives.

It is the motive that matters ... lets see where their bad Karma takes them ...

Chrystal wrote: What truly boggles my mind is the fact that the MSSC was the first out the door, after the November 2009 W5 CCSVI piece, to claim our vascular condition as their territory...and yet they keep also saying that evidence is needed to establish a link between MS and CCSVI before further studies can be done to establish whether treatment of CCSVI will have any improvement on MS.

So the move to claim CCSVI from the get-go - was it just to stall any actual testing and treatment of MSers for this condition?

SBR487, these are deliberate acts, aren't they? I feel now that every step taken/not taken by the MSSC has been a deliberate and calculated step with a specific agenda in mind.

It is an organization. A corporation. If you work full time for it, your job depends on it. So do the jobs of everybody you work with, and a lot of the people you see all the time. If you have invested time or money in the MS industry, you don't want to see that go down the drain.

You will defend. You will tell yourself, and everyone else, you are only interested in the patients. But it isn't true.

Regardless of how you might feel about it, you will be ordered to defend, which will enhance that impulse quite effectively.

PwMSS (Persons with MS Societies) are interested in the continuance of their jobs and business dealings Though they profess interest in sick people, they also have economic agendas which come first. They work for a charity with a high overhead, and are paid well.

Though they want to help, they also want the status quo. Liberation threatens, and some people do not suspect the end. Some who are too young or too sheltered, don't see MS from personal experience, have no idea. I hoped they never have to experience what some TiMS members go through. (Certainly some do seem to deserve to.)

It is heartless, the mind-numbing blatherings about placebo, when so many could be helped, saved from suffering, and saved from death. Science can be wonderful, but it is very boring to someone who is dying.

It is horrifying to see psychotic people who gain positions of power over the sick, and then are threatened when someone else tries to help them. They lash out in public against the would-be helpers, disgracing themselves and their peers.

I renounce my association with those wanna-be scions of neurology, my diagnosis of MS, the MS Societies, and my reticence to speak against them. I will fight them with all the breaths I have left.

Chrystal et al, brilliant. Simply brilliant.

We should hold the Societies accountable. We are the community that they are here to serve.

Beautifully done!

I have to say that I cannot forget the good the MSSC has done and continues to do for MSers on one hand. That is what makes their actions/inactions concerning CCSVI so very difficult to understand.

But even more, I will never forget the way the MSSC has let us all down so terribly now - when their advocacy would have helped us the most.

In good conscience, I honestly cannot really say if the MSSC's actions/inactions are deliberate or calculated - I can only say that they are questionable, hence the many questions we have all been asking of them...many still remaining unanswered, which only leads to more questions.

I would have thought the MSSC would be jumping for joy over a procedure that has been providing relief to symptoms of MSers who have been able to travel abroad for treatment.

I thought the MSSC would be banging at the government's doors strongly advocating for immediate testing and treatment in a caring and compassionate attempt to provide relief of symptoms and hopefully a stay in progression for people like Ms. Wehmeyer, the woman PCakes mentioned, the relative of a friend, or many others in further stages of this disease.

I thought the MSSC would be outraged at the thought of MSers with little to no energy and varying levels of disability having to petition, lobby, rally, beg, plead, and finally drag their fatigued and MS-riddled bodies out of their home country in order to seek testing and treatment that should be available to them here.

Even now, after seeing how well Barb Farrell is doing - I thought the MSSC would have at last embraced CCSVI at the very least for those in further stages, first and foremost...rather than risk losing even one more MSer to this disease.

I will continue asking questions of the MSSC in hopes of receiving answers and I encourage others who have questions to do the same. But we must keep banging on the doors of the decision-makers with our letters and appeals for the discrimination against MSers to end asap, for the sake of those who cannot travel out of Canada for treatment.

This fight can and is taking a toll on many of us. Please take care of yourselves and be sure to enjoy the blessings in your life.

Still no answers to any questions of mine or fellow MSers on the MSSC Facebook site.

Please read the following message posted by C.P. on http://www.facebook.com/MSSocietyCanada

Mon. Aug. 16:

Alberta's Health minister Gene Zwozdesky has informed me that he is putting together a working committee to address Alberta's MS position and recent developments with MS research (including the Liberation procedure), he had indicated that a senior official from the Alberta Chapter of the MS Society will be part of this committee as well as ministries from Housing and Urban affairs, Children and Youth Services and Alberta Health Services. Not one mention of any MS patient representatives or CCSVI advocates who actually might have factual information. I have asked these questions at the Alberta chapter FB page and get no response there as well.Rob; I rec'd a letter from Gene Zwozdesky (AB's Health Minister) about CCSVI, he had indicated that he has formed a working committee to determine AB's MS strategy starting the end of Sept 2010. He also indicated that this committe will include reps from the MS Society of Canada - AB Div, Alberta Health Services, housing and Urban Affairs etc.

Please advise who from this MS Chapter will be attending, and what will their recommendations be to Mr. Zwozdesky? It seems odd that there will be no representation in this committee from any persons who have MS and who have been treated for CCSVI. I'm afraid that the info that will be given will not be accurate or be representative of the MS population that supports CCSVI testing treatment. How do we ensure that the facts are presented and our voices are heard?

(C.P. still hasn't received a response. C.P. said she had also posted the above questions on the Alberta Chapter's Facebook site and hasn't received any answers there either.)

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Fellow MSers, we need patient representatives on the above-mentioned Working Committee and at any CCSVI meetings with the Government, to ensure that accurate and timely CCSVI information is always presented.

Please write to Gene Zwozdesky, his e-mail address is:

gene.zwozdesky@gov.ab.ca

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We also need the Alberta Chapter FB page to respond to questions asked about this Working Committee. If you want answers about the working committee, please post your questions here:

http://www.facebook.com/pages/MS-Societ ... 6302027709

or e-mail them to:
info.alberta@mssociety.ca

Individual Staff Contact Info:
http://mssociety.ca/alberta/contact.htm

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Thank you for any help you can give with ensuring our voice is heard/read by e-mailing, posting, and commenting.

Take care and keep well.