CMAJ Editorial: Direct-MS response

Here is a response from Direct-MS to my last post that I copied as a new topic of discussion on TiMS:

The authors of the CMAJ editorial miss a number of key points probably because they know very little about the science of CCSVI. It is unfortunate they did not do their homework before writing their inadequate and somewhat naive editorial.
The current published scientific evidence leaves no doubt that CCSVI is closely associated with MS, that CCSVI precedes the MS disease process and that there are numerous, very plausible biological mechanisms which relate the effects of impaired venous flow (CCSVI) to the MS disease process. This science, in conjunction with the availability of a very safe, established procedure to resolve CCSVI is enough to justify treatment of CCSVI for anyone with MS.
Once you add the facts that it will be at least 8 years before the proper research is done (note current MSSOC research ending in 2012\13 just looks at the already established CCSVI/MS association and will add nothing new) and that many people will suffer major added disability in those 8+ years, it becomes ridiculous and basically barbaric to deny treatment.
The final problem is the gigantic conflict of interest that almost all MS neurologists have with an effective, vascular, non-drug treatment. The financial consequences of CCSVI treatment are dire for MS neurologists and this has led them to publicly claim CCSVI is a hoax and to lobby hard to stop any treatments and to ensure no useful research (i.e. treatment trials) is done by MSSOC. It appears the neurologists have persuaded the CMAJ editors to help them beat back the obvious need for CCSVI treatment. Such are the current politics of MS which are dominated by the financial health concerns of neurologists rather than the physical health concerns of patients.

Canadian Medical Association Journal Editorial on medical research and politics

Here are the links to the CMAJ editorial and Globe and Mail article about the editorial.  There are good points made in the editorial, that medical research should be driven by science, not politics.  However, while many MSers would agree that research funding should be based upon good science, they feel that it is already driven by politics... the "politics" of money that comes from big drug companies, and the "politics" of researchers and organizations that are invested in the status quo.  As well, many MSers are tired of how they are portrayed as "desperately hopeful", as if that means that they can't make good decisions about their own treatment based upon the evidence and good arguments.  Actually, many of these "afflicted, desperate people" know more about the issue than the neurologists that have been giving their "less-than-humble" opinions.

Two months since liberation

My energy is still way up. I have more strength in my left arm. My mobility and balance are still a bit better - I haven't used a cane in a month.  My manual dexterity is still better: I wear shirts with buttons on a regular basis again, and only have problems if I'm really tired from exercising or from walking around.  So far, so good!

Clinical Trial Testing New Multiple Sclerosis Treatment to Launch in Buffalo

Hmmmm... I wonder how many applicants they're getting to be in on this trial?  Lots, I'll bet: http://www.prweb.com/releases/2010/06/prweb4199404.htm.

A call for government action on Multiple Sclerosis

It looks like this may be the Liberal Party's position on MS and CCSVI... and still no response from our Health Minister: http://www.liberal.ca/en/blog/18437_a-call-for-government-action-on-multiple-sclerosis.  Unfortunately, while the federal government could at least be putting pressure on the provinces (instead it seems to be doing nothing), it still is the responsibility of the provinces to move on this, and they've been doing nothing to advance the issue, or even worse, impeding progress.  Shame on them!

Biking and Symptoms

I went biking today, for about a half hour.  I took it easy, but by the end of it my left leg still felt tired.  After that we did some shopping, and by the time we got back home, my arms felt heavy.

That's something I notice when I've had a hard workout: my arms and even my gut feel like I'm in a high-gravity environment, with my arms and the core of my body being dragged down.  These aren't new symptoms, per se, but with my exercising ramping up a bit, I feel it more often these days.

MS Care Givers - an interesting thread

Here is an interesting discussion concerning MS care givers, their difficulties in dealing and/or empathizing with an MSer: http://www.thisisms.com/ftopict-12444.html.  For many care givers, it is not until they are able to compare MS symptoms to something that has happened to them can they truly empathize.  For example, one female MSer explained to other females that MS fatigue was much worse that the fatigue she felt while pregnant, which made it much easier for them to understand.  Of course, that didn't help the male MS care-givers in the audience...

Neurology Today: Shifting Position on CCSVI

While still calling for more study rather than treatment, stressing risks (known to be low) rather than potential benefits, and ignoring vascular specialists who say CCSVI must be mostly congenital (rather than "possibly caused by MS"), at least this article is more fact-based than others in the past and shows that the neurological community is no longer automatically pooh-poohing the CCSVI theory: http://journals.lww.com/neurotodayonline/Fulltext/2010/06170/New_Theory_on_CCSVI_and_MS_Needs_Further_Study,.13.aspx.  As one MSer commented in the CCSVI Facebook site:

First, you know, a new theory is attacked as absurd; then it is admitted to be true, but obvious and insignificant; finally it is seen to be so important that its adversaries claim that they themselves discovered it.
-James,William

More about Barb

More details about Barb Farrell after being "liberated": http://www.thebarrieexaminer.com/ArticleDisplay.aspx?e=2637475

Barb Farrell is treated

Two of my internet friends want to share further developments on the Barb Farrell story, from the Barrie Examiner: http://www.thebarrieexaminer.com/ArticleDisplay.aspx?e=2636983.  Also, since the article went up, her husband has posted on the CCSVI Facebook page to say that his wife is feeling some improvements already.  Let's hope they continue, and that Barb's story inspires the Canadian medical establishment to do the same (or shames them into it).

Zombie science?

Do some debunked medical theories have a "life after death" when there is enough money around to keep them breathing?  This TiMS thread makes the case that this may be happening with the "MS is an autoimmune disease" theory, and also tells us a little bit about a "zombie-hunter" authour who is under contract to write a book about the whole MS CCSVI vs autoimmune controversy: http://www.thisisms.com/ftopict-8768.html.

When studies disagree: cancer treatment and CCSVI as examples

This online CTV column goes a long way to explaining why a recent German/British study seemed to indicate that almost NO MSers had CCSVI: http://healthblog.ctv.ca/post/When-studies-disagree-cancer-treatment-and-CCSVI-as-examples.aspx. For MSers (or anyone), the bottom line is that we need to make sure that the methodology of the research and basis of comparison are valid if we are going to make intelligent decisions.  In the case of the German/British study, the methodology was so unorthodox that the researchers could in no way claim that they were searching for CCSVI - but yet they (or someone covering the story) did announce exactly that!

Dr. Sclafani's Proposed Trial Is Refused!

It looks like the anti-CCSVI cabal has won another round.  This was posted on TiMS today by the good doctor Sclafani himself (who was proposing to do testing and treatment in a clinical trial setting in the US):

NO!!!!
THE GOOD DOCTOR DID NOT GET APPROVED. THE GOOD DOCTOR GOT SHOT DOWN. I HAVE NOT RECEIVED THE OFFICIAL REJECTION BUT AMONG THE ISSUES THAT WERE RAISED AGSINST MY PROPOSAL WERE

1. AN OBSCURE GERMAN ABSTRACT REPORTING TEN PATIENTS THAT SHOWED NO ASSOCIATION BETWEEN CCSVI AND MS
2. A NEWLETTER OF SOME FORM STATING THAT ONLY RANDOMIZED TRIALS SHOULD BE PERFORMED.
3. THAT RANDOMIZED CONTROLLED STUDIES WERE ALREADY UNDERWAY IN BUFFALO. ANYONE KNOW ABOUT THAT?
4. THAT THE NATIONAL MS SOCIETY RECOMMENDED AGAINST TREATMENTS
5. THAT PATIENTS WERE BEING CHARGED FOR PROCEDURES. AND I HAD NO FUNDING
6. AND OF COURSE, THE WALL STREET JOUIRNAL TALKING ABOUT DAKES COMPLICATION AND DEATH

SORRY FOLKS, I AM REELING

I AM LOST RIGHT NOW.

I AM SPEAKING TO OTHERS WHO DO THE PROCEDURE TO SEE IF I CAN DO MY PATIENTS AT THEIR SITE.

I AM LOOKING FOR SOMEWHERE ELSE TO TREAT MY PATIENTS.

ANYBODY KNOW OF ANYONE INTERESTED IN INVESTING IN A PROCEDURE SITE?


SORRY TO ALL OF YOU. I AM SO UPSET

I am certain that there will be lots of MSers who are upset about this.  What a travesty!

Letter to Canadian Legislators

In case you didn't see it on the TiMS site, here is a well-written letter from the husband of an MSer who had followed the House of Commons debate on MS that was sent to a long list of Members of Parliament:

Subject: Last Night's Debate on MS


I was one of the few people who was able to stay for the entire debate on Multiple Sclerosis in the House of Commons last night. Unfortunately, and no doubt despite an incredible stake in the matter, the MS patients in attendance simply did not have the physical stamina to last the entire session.


I’d personally like to thank each and every MP who attended or spoke during the session especially those whose personal stories and passion were so evident. For the most part I was pleased to see that a non-partisan cooperative consensus was reached that “everything possible must be done to expedite and fast track helping Canada’s MS patients.” For what it is worth I will provide what I believe to be a few key observations that I hope are worthy of your further consideration.


We certainly appreciate the funding that has been made available and believe that this contribution is vital to accelerate the search for answers. To some extent I think we understand the constraints that the Federal Government is faced with under our Constitution and the Canada Health Act and thus we recognize that there is only so much you can be held accountable for. Having said that there is an incredible sense across Canada that Government bureaucracy, strong stakeholder lobbies (MS Society, Provincial Medical College’s, Neurologists) and the Canadian conservative culture might easily squander precious time and money.


From a political perspective Canadians are incredibly frustrated with the waste associated with duplication, intergovernmental jurisdictional squabbling and bureaucratic time horizons. We get that issues have political subtleties here but it would seem that this issue is a real opportunity for politicians to show Canadians what can be done with the right leadership and will.


I thought that Hon. Mauril Bélanger (Ottawa—Vanier, Lib.) properly emphasized one of the key opportunities “One should never underestimate the power to convene.” I would like to suggest that this power can be further augmented provided:

1. Time horizons are measured in days and weeks not months and years.
2. There is a detailed attention to the makeup of the invited attendees – those of us who are spending a great deal of time in review of the issues here are quite concerned that the MS Society and Neurologists may have bias fuelled by the status quo. Please ensure other voices are heard.
3. Even though we believe that the issue here is one of equality under the Canada Heath Act (why would MS Patients be subjected to a different standard than others with Vascular problems) we recognize that the issue has become one of a risk assessment. Given that we know that the risk associated with angioplasty is low enough to be indicated for those with a whole range of vascular problems we must assume that there is a perceived need to further asses the risk that MS Patients would bear an additional burden associated with the possible mental breakdown associated with false hope. Hopefully those setting the terms of reference and thresholds for the risk assessment can give MS patients the respect they deserve – yes MS Patients have their hopes up but we do not require state protection here. We are capable of assessing the risks of a letdown vs. the possibility that the procedure might halt our debilitating disease.
4. The process and decision framework for any collaborative meetings must be designed with care to ensure that all options remain open. In my mind this should not be a situation that deteriorates into and either or scenario (either we study more or we open up the floodgates) but one where simultaneous tracks can safely coexist. It seemed clear to me that the Hon. Leona Aglukkaq (Minister of Health, CPC) position was pretty entrenched in the “study more” camp. Given that there is a rapid deterioration for many MS patients day after day we would respectfully suggest that risk assessments need a low threshold. When is enough evidence enough evidence? Is there really a potential harm requiring more study here or might a dual approach be considered that simultaneously studies the results in a post operative longitudinal study?
5. At a time where PST/GST and G20 issues infuriate Canadians it would seem an opportune time to divert some national attention to a story most people can get behind. Do what you can to convene one meeting (not 13 meetings) of Provincial Health Ministers and show Canadians you can understand the issues, work together, cut through red tape, save us all some money and protect our health ideals.

Once again I’d like to thank all of those who participated in last night’s debate. We know that you have many priorities but will never-the-less be watching very closely to see if you can indeed make a real difference.


Thanks again!


D S, CA


PS. My wife has MS and we are watching her deteriorate very rapidly at this moment.

Of Interest to MSers

There have been quite a few interesting developments related to MS and CCSVI lately, all gleaned from TiMS discussions, including:

1. Here in the most recent postings of Dr. Sclafani's thread is an interesting discussion about some venous anomalies that may be missed when the catheter venography is done through the right femoral (as was done in my case) rather than the left: http://www.thisisms.com/ftopic-10680-2010.html.  Going through the right femoral is easier than using the left, but going through the left femoral allows you to check some additional veins that may also cause poor blood drainage away from the central nervous system.  This is could mean that the 90-95% of CCSVI found in MSers by Dr. Simka's team may actually be low! 
2. As reported by the Dutch TiMSer joge, there is another site for CCSVI testing and treatment: Dr Beelen in Belgium is conducting CCSVI and screening AND treatment.  In a reply to a journal article (described in the next point below) Dr. Beelen says that his team has diagnosed 97 out of the 107 MS patients tested as having CCSVI... so the 90+ percent seems to be holding up very well in independent diagnostic centers: http://www.thisisms.com/ftopicp-118447-beelen.html#118447.
3. One of the recent active discussions (from which the point #2 above was taken) relates to an article written by doctors in a neurological center in Amsterdam that tested 20 MSers and found NO CCSVI: http://www.thisisms.com/ftopict-11029.html.  Through the usual collaborative, multi-party internet sleuthing that is one of the great benefits of sites like TiMS, it became apparent that this article is really not a very good rebuttal of evidence for CCSVI at all, that the "researchers" did not use the Zamboni techniques and may not even be vascular specialists... perhaps they only produced what some neurologists wanted to hear?

Father's Day and Button Shirts

My wife gave me shirts for Father's Day... button shirts, which is a hint, I guess, that I have to maintain my newly regained ability to button my shirts!  *smile*

Anonymous Donor Helps Barbara Farrell

I looks like Barbara is going to be liberated!  Thanks to Shelley who put me on to this latest development: http://www.thebarrieexaminer.com/ArticleDisplay.aspx?e=2630382.  I hope everything goes well for Barb.

Dr. Ashton Emery - a letter to Parliamentarians

A good reference letter to keep around: http://www.ccsvicalgary.org/wp-content/uploads/2010/06/Letter-to-Parliamentarians-16-06-10.pdf.  Also, while I have not checked out all of the initiatives funded by Direct-MS, if I'm satisfied after doing some due diligence that this organization does fund projects that I agree with, it gives me an alternative place to put my MS donations - 2% for administration and fund-raising versus 48% for the Multiple Sclerosis Society of Canada!

Which charities spend the most on administration?

I've tried hard not to bash the MS Society because, despite their poor attitude vis-a-vis CCSVI, I don't really know the organization and they may, in general, be doing good for MSers.  However, it's really hard not to get angry when I find out that almost half of any donation to them goes to administration and fund-raising: http://www.moneysense.ca/2009/12/21/canadas-40-biggest-charities/ - that's scandalous!

Try to read this one...

without a tear in your eye: http://www.thisisms.com/ftopict-12268.html.  Beautiful!

Parliamentary Sub-committee Hearing: Drs. Zamboni and Simka Testify

Some very interesting testimony at the Parliamentary Sub-committee hearings, including strong statements from Drs. Zamboni and Simka concerning the efficacy and safety of CCSVI, and questioning the ethical stance of waiting for more clinical trials before allowing treatment:

1. First part of Dr. Zamboni's testimony: http://www.youtube.com/user/famillejoyeuse#p/u/2/YkQtstOvcGA
2. Conclusion of Dr. Zamboni's testimony, and Dr. Simka's testimony: http://www.youtube.com/user/famillejoyeuse#p/u/1/1hwgnZ32s80
3. As well, here is the statement of President of the Canadian Institute of Health Research concerning that organization's commitment to MS research, its intention to convene a meeting in August of top Canadian and international medical researchers in neurovascular disease (to discuss CCSVI) and an invitation to researchers to propose research projects aimed at investigating the links between MS and CCSVI: http://www.youtube.com/user/famillejoyeuse#p/u/0/xeqOw05JnKA

Hospital CEO denies woman an opportunity for CCSVI treatment

Here is a heart-breaking story about a woman with MS who was two days away from "liberation" when Dr. McDonald's team was told to stop doing CCSVI treatments: http://www.thebarrieexaminer.com/ArticleDisplay.aspx?e=2619856.  Beyond the fact that it appears more than a little unethical to deny her treatment because she has MS, she is failing rapidly and it seems to me that the CEO of the hospital (Janice Skot, skotj@rvh.on.ca, according to my good source Shelley) would at least let the treatment go ahead on compassionate grounds.

Time to treat CCSVI condition

Although acknowledging that more research needs to be done and welcoming the research funding from the American and Canadian MS Societies (with some quibbles), this doctor/blogger feels that it is time for governments (and the MS Societies) to get off the fence and start treating CCSVI: http://healthblog.ctv.ca/post/CCSVI-trials-and-tribulations-Do-we-already-know-the-answer-to-the-question.aspx.  After all, poor blood flow to one of the most critical organs of the body should be fixed, regardless of the nature of the relationship between CCSVI and MS.

Is the MS Society of Canada becoming irrelevant to MSers?

None of the CCSVI advocates vying for positions in the MSSC Board of Directors for 2010/2011 were elected at yesterday's annual general meeting.  As a TiMS member noted the other day:

"as reported in the Montreal Gazette, one Board member e-mailed members and potential members urging them to register their vote to re-elect the current Board members and prevent CCSVI supporters from getting on the Board."

So it appears that the entire slate of directors favouring the status quo were elected.  However, that is not the spin put on it in the MSSC message from the chair of the national Board of Directors, Linda Lumsden:

Clearly the topic of CCSVI has been one that has raised a spectrum of opinions. I offer the words of board member James Orr to provide perspective:

“I hope and believe that today’s annual general meeting shows that all of us impacted by MS have more similarities than differences. Anyone who has a loved one with a disease as difficult as MS would want nothing but the best for them. My wife Adriana progressed through various stages of MS and now requires the support of long term care, even though she is still young and competent. She has experienced many treatments and many disappointments. If the CCSVI procedure were available across the country as part of a trial, Adriana would want to try it as soon as possible, assuming she was cleared of any medical risks. We all want a life without MS or at least a life improved. I hope that we can all work together to make this happen.”

In this spirit, the national board of the MS Society will be convening a special CCSVI working group, chaired by a member of the board. The group will include persons with MS, members of the clinical and research community and members of the national board. The group will provide for continuing dialogue about the important issues of CCSVI research and treatment and will inform the work of the board.

So there will be CCSVI working group that will probably include "esteemed" researchers like Freedman, clinical neurologists and Board Members who are fine with the MSSC's current approach, which includes some small funding for peripheral issues related to CCSVI diagnosis (not treatment).  I wonder if the CCSVI working group will include a "tame" vascular specialist, for appearances?  Interestingly, the UBC/Saskatoon will receive some funding, though the McMasters group will not receive any.  And none of the funding will be aimed at studying the treatment itself, or at studying people who have been treated (of which we now have quite a cohort in Canada, most of whom were treated in Poland).  It appears to me that this means that anyone hoping to see treatment available in Canada in anything less than 5 years will be disappointed, if these people get their way.

Am I being too cynical?  I hope I am and would appreciate it if someone could provide me with information that would quell my apprehensions.

Too much wine?

I'm at the cottage again, up here to meet my cousin who, together with two friends, is continuing his annual (almost annual, except when health problems get in the way) coast to coast odyssey.  They started from Vancouver about five years ago and this year they are doing the Montreal to Halifax segment.  We put away a LOT of wine last night and today many of my MS symptoms were as bad as they had been before liberation, except that I don't feel the fatigue at all.  I hope this only means that I need to practice moderation, because I would hate to think that I would have to give up wine in order to maintain my liberation benefits!

Is social media changing medicine?

Here is another interesting article found (by the CCSVI facebook folks) in the Huffington Post: http://www.huffingtonpost.com/riva-greenberg/are-doctors-losing-their_b_596060.html.

One of the observations in the article that particularly struck a chord with me was:

While physicians do not have the time to keep themselves up-to-date on every disease and condition, they can actually take advantage of their patients who are becoming knowledgeable on their specific condition. Patients sharing what they are learning from social media sites offers doctors an opportunity to be educated by their patients.

I am fortunate to have a GP who was quite interested in and supportive of my research into CCSVI.  I hope other medical professionals can begin to see their patients as partners in overcoming or living with health problems.

Happy with Liberation?

A new discussion thread has been begun by "scorpion" on TiMS (http://www.thisisms.com/ftopict-12080.html) that some of you might want to follow.  Basically, he is asking the liberated:

How are you feeling? Do you agree with the the posts on this forum calling for a rebellion against the MS Society, neuros, and pharmas? Could what you are experiencing be a placebo effect or are you positive you are experiencing improvements due to the liberation procedure? Is there anything that you can identify that has gotten worse since the procedure? Would you recommend people go off theie MS medications? Have you changed your way of thinking, in a positive or negative way, about CCSVI?

There are some fairly good responses in that thread already.  My own response was:

I was "liberated" April 29th, almost six weeks ago. I did not notice any sudden and miraculous improvements at the time. A couple of weeks after the procedure I noticed some increased strength on my weak left side. My daily energy levels have slowly increased to where I can schedule and look forward to doing several tasks in a row rather than building up my energy to just do one thing. The physiotherapist checked me today and I seemed to have improved a bit in my mobility and balance since the time my benchmarks were set a few months ago. I cannot say, however, that these are not placebo effects. Ask me again in a year, because the real test of the benefit of CCSVI treatment, for me, will be if my deterioration has stopped.

I am not pleased with the attitude and actions of the MS Society of Canada, and feel that if the same Board with the same attitude gets elected, the organization risks become irrelevant to MSers in this country.

I am disgusted with those neuros that dismiss the whole idea out of hand without actually studying the issue. I am angry that Canadian medical organizations have forced vascular specialists to stop doing their jobs just because a patient has MS. However, I don't want all medical professionals to be tarred with the same brush, because some are quite open-minded about the possibility of a causal link between CCSVI and MS and, while recognizing that this needs a lot of study, also understand that MSers who are deteriorating quickly need to make timely treatment decisions.

A pharma exists to make money. I don't have to be conspiracy theorist to recognize that their goals may not always coincide with mine.

I am still on Betaseron, but will discuss with my neuro (who is currently studying the information I brought back from Katowice) whether I should continue the medication.

Given the information I had and the information I have up to today, I did the most logical thing when I became "liberated". I would hope that all MSers could be assessed for CCSVI and then given the option to be treated locally.

Benchmarks

I was at the rehabilitation centre this morning, having my mobility and balance tested against the benchmarks set a few months ago.  Despite still being sore and a bit stiff from Saturday's work at the cottage, I did score a bit higher in this series of tests.  Although it was only a bit better than I might have done on my better days before "liberation", it is still trending the right way.  Let's hope that this keeps up!  Oh, and I haven't used my cane for the last couple of weeks, which is also a good sign.

Sore today...

Perhaps I overdid the cottage work a bit yesterday: I woke with lots of sore muscles this morning, muscles I hadn't used much lately.  What a great feeling!

At the cottage again

I got lots of work done today... finished fixing the steps to the beach, did some shopping, then re-piled and put a new tarp on the woodpile.  That woodpile task took over three hours, most of it working in the rain.  I was quite tired at the end of it, but good tired, no MS fatigue.  Another good day.

5 weeks and feeling... stronger!

It's now five weeks since I was liberated, and I'm definitely feeling stronger... in my walking, in my exercises, in the energy I have to do things, I continue to see small improvements.  They come slowly, in dribs and drabs, they sometimes regress, but overall I continue to see a gradual improvement in my strength, my balance and my endurance.  Today was another good day.

Letter from Dr. Simka to esta, a Canadian liberated MSer

Here is a reply, posted on TiMS, to an inquiry from a Canadian lady who was worried that she may have restenosed.  It answers quite a few other questions people may have, as well:

I will give you some details on our current policy, and also on our findings coming from gathered data. perhaps, you can post these information on TIMS, since many patients are looking at this forum.

Our main goal of diagnostic procedures is to find all significant (i.e. impairing the outflow) venous lesions. Consequently, we perform Doppler sonography and MR venography as screening tests. Theoretically, both these examinations are not necessary, but in some patients (~10%) they are very important (anatomical variants, borderline pathology, unoperable lesions). Doppler sonography and MRV are only screening tests, i.e. they reveal that there is a pathology and in most of the cases they predict were the pathology is situated. But they are not 100% accurate. Intraoperative venography is far more reliable, but even this test is not perfect. So a combination of Doppler+ MRV + intraoperative venography is better. Now, we think about applying also IVUS (intravenous ultrasonography), but it will substantially increase the cost, so most likely we will use it only in selected cases.

Regarding the treatment, we opt for the most safe and the most efficient treatment, which of course is not possible, since those two parameters don't meet it every case. Balloon angioplasty has already been demonstrated to be very safe in a short time, and most likely safety in long time is also nearly perfect. But balloon angioplasty is not very efficacious. In some cases it doesn't work at all, in the others there are late restenoses. The short-term efficacy of an alternative treatment - stenting is much higher. But long-term efficacy (risk of late occlusion) is not known. Although occluded stent can be opened, but probably not in every case. And of course there are known early complications related to stents, namely the migration, that exclude some anatomic variants from stenting (at least using currently available stents). There is also possible the open repair of the vein, but risk and efficacy of such procedures are not known. Thus, all treatment modalities should be regarded as experimental, with still unknown efficacy and safety. The doctors always try to balance the risk and the efficacy factors, but the best solution is not always possible and is not always chosen (importantly, we don't have data on long term consequences of ballooning or stenting).

Now, what about impact of the treatment for CCSVI on clinical course of MS. Our data indicate that the things are far more complicated than it might be suspected.

1. CCSVI is not an equivalent for MS; most likely, MS = CCSVI + some (probably more than one) other factors
2. Consequently, treating CCSVI does not mean that MS is gone. Most of the patients experience good and bad days following surgery, importantly, during infection, stress, etc. the symptoms usually go back. But the symptoms also go back in a case of restenosis.
3. Treatment of CCSVI does not guarantee improvement. There were some patients (not much, still, they were) who experienced worsening. Most of those patients presented with severly narrowed veins that could not be sufficiently managed with ballooning or stenting, but there were also cases with "perfectly" done surgery. So, a patient can improve after surgery (a majority, especially relapsing remitting patients), but no improvement or even worsening is also possible. A reoperation can improve the symptoms in the latter two groups, but again, not in all cases.
4. Probably, surgery for CCSVI + pharmaceutical treatment will improve outcomes. Try to continue your neurological medication if it were working before surgery.
5. Many patients who suffered from transient worsening of symptoms, improved after inclined bed therapy. You can try it, even if not efficient, at least it is 100% safe
6. Postoperative Doppler examination is sometimes puzzling. In most of the patients the flow just after the suregery is still pathologic. Threfore we don't perform it after operation (we don't want to stress the patients). Even after some days there are still flow abnormalities, especially after ballooning. So, we think that patient should look at his/her symptoms first.

And, importantly, current situation when patients must travel thousands of miles to have the treatment is neither normal nor is it safe. At the moment healthcare systems seem to overregulated. It must be changed. Especially, cooperation with neurological community and big universities with access to big public money is pivotal. Surgery is not the only solution, it must be augmented by something else.

Testimonials from two liberated MSers

Two great liberation testimonials, one 30 days after liberation, one only a few hours after the procedure(!):

• Denise: http://www.youtube.com/watch?v=l-EVEik_0dg
• Jeanine: http://www.youtube.com/watch?v=hcvCjzNYYR4

Comments of a non-MSer Friend on Blocking Behaviour of Medical System

These are some comments from a friend who is concerned about the blocking behaviour we've been seeing from some in the medical system:

This is going so much faster than anything the medical establishment has ever dealt with.

A new stakeholder group is at the decision-table: Patients.  This group , while unwelcome, is not leaving.

I think the real medical miracle may not be in MS, rather a miracle of transparency in the eco-system of medicine.

We are watching it in real time play out.

Decision maker transparency is what is fuels this revolution.

Web-publish the people and their positions that made the decision to block key CCSVI practices.  Catalog the procedure (eligibility, delivery, etc) and connect the people and the position from which the decision was made; add to this table a paragraph description of the decision made; and a forth column containing a paragraph of its implementation.  When decision are made by committee publish all the names and the committee's mandate.

He and I are thinking about putting together an on-line database of all the individuals and groups that are making decisions that block progress on CCSVI assessment and treatment.  We'll keep you posted about our progress.

The Parliamentary Sub-committee on Neurological Health - Part II

In case you haven't already heard of this on TiMS or elsewhere, here is the audio for the second Parliamentary sub-committee meeting that was held this morning: http://parlvuvod.parl.gc.ca/StreamLogger/2010/2010-06/00019ede.wmv.  This includes presentations by Dr. McDonald, Dr. Haacke, Lianne Webb and Steve Garvie.  Note that the audio only begins after a minute or so of silence.  WARNING: Contains very emotional, heartrending testimony by Lianne and Steve (liberated MSers).

And here is the CTV piece on the meeting, but giving some context, as well: http://www.ctv.ca/servlet/ArticleNews/story/CTVNews/20100601/ms-ccsvi-parliament-100601/20100601/