Dr.Simka's Letter to Canadian Parliament

EUROMEDIC Specialist Clinics, Department of Vascular & Endovascular Surgery, Katowice; Poland

June 15, 2010
To the Canadian Parliamentary Subcommittee on Neurological Diseases

I represent the centre that I believe has performed the largest number of endovascular treatments for chronic cerebrospinal venous insufficiency (CCSVI) in the world. Although we only began those treatments in October 2009, we currently perform about 20 procedures per week, and total number of people who have been treated is now around 400. It is important to point out that the interventions for CCSVI in our Department have been approved by the Bioethical Committee of the Regional Silesian Board of Physicians in Katowice, Poland. Because we collect all data regarding patients’ history, clinical status and the characteristics of the venous lesions that have been diagnosed, the analysis of this dataset has enabled us to draw some conclusions regarding links between CCSVI and multiple sclerosis.
   First, CCSVI has been found to highly correlate with multiple sclerosis. Only 3% of the MS patients we have seen were not diagnosed with CCSVI (using color Doppler sonography, magnetic resonance venography and standard intraoperative venography).
  Second, localisation and severity of venous lesions have been found to significantly affect the clinical course of MS. For example, injury to the optic nerves were found more often in the cases with unilateral lesions in the internal jugular vein, while bilateral stenoses in the internal jugular veins correlated with a less frequent ocular pathology. More disabled MS patients were found to suffer from bilateral and/or severe occlusions of the internal jugular veins and the patients with stenosed azygous vein presented with the most aggressive clinical course of MS. These findings, in addition to preliminary observations that a substantial percentage of MS patients improved after endovascular interventions for CCSVI, favour the idea that surgical treatments for those venous obstacles should be an important part of the management of MS.
  The most important question regarding treatments for CCSVI, however, regards the safety of such a management of venous outflow blockages. Such a management strategy is actually recommended by the Consensus Document of the International Union of Phlebology for the diagnosis and treatment of venous malformations. However, although similar endovascular procedures for the treatment of other venous pathologies are known to carry very low risk, an actual rate of complications related to such treatments for CCSVI remains undetermined, mainly because these procedures are not yet routinely performed in these cases. Moreover, recently in some neurological papers it has been claimed that surgical treatment for CCSVI can be dangerous. Interestingly, these statements were based only of the beliefs of the authors, and not on the body of evidence. Contrary to those opinions, in our clinic we have demonstrated that these procedures are safe and usually well-tolerated by the patients.
   In brief, 347 CCSVI patients with associated multiple sclerosis have undergone a total of 587 endovascular procedures: 414 balloon angioplasties and 173 stent implantations were performed during 361 interventions. There were only few, rather minor and occasional complications or technical problems related to the procedures. These included: i. life threatening complications: death - 0, major hemorrhage – 0; cerebral stroke – 0; stent migration - 0; ii. major complications: early stent thrombosis – 2 (1.2%); postoperative false aneurysm in the groin – 2 (0.6%); surgical procedure (opening of femoral vein) to remove angioplastic balloon – 1 (0.3%); injury to the nerves - 0; iii. minor complications: transient cardiac arrhythmia – 2 (0.6%); minor bleeding from the groin - 2 (0.6%); minor gastrointestinal bleeding – 1 (0.3%); postprocedural lymphatic cyst in the groin – 1 (0.3%); problems with the removal of angioplastic balloon or delivery system – 5 (0.9%).

photo courtesy of Danial Neil "the sun always sets to rise again."

   Therefore, in our opinion, precise preoperative diagnostics and selective use of the stents (if balloon angioplasty was not successful) can make the endovascular management of CCSVI free of significant complications and, in terms of restoring the proper venous outflow, more efficacious than performing balloon angioplasty in all cases. However, the actual impact of the endovascular treatments for venous pathology on the clinical course of multiple sclerosis warrants more clinical studies and long term follow-ups.

ASHTON EMBRY'S DESCRIPTION OF MS SOCIETIES

Why National MS Societies Are Not Acting in the Best Interests of Persons with MS

Ashton Embry

Introduction
  With the advent of CCSVI as a major factor in multiple sclerosis, it has become painfully apparent that national MS societies do not have the best interests of persons with MS as their highest priority. This has taken many people by surprise because most people are under the assumption that the main concern of national MS societies is the well being of persons with MS. This assumption is not, and has never been, true. Perhaps one more benefit of the discovery of CCSVI as an important causal factor of MS, has been to expose the myth the national MS societies have people with MS as their #1 priority.
The Groups of the MS Societies
   To understand the priorities of national MS societies, it is essential to understand the various groups which compose their structure. These groups are the scientific advisors, the staff members, the board members, and the members of the society who are mainly persons affected by MS. Each of these groups plays a very specific role in how a given national MS society functions.
   The most important and influential group is the scientific advisors who determine the type of information the society provides to the members and to the public at large. They also determine what research will be done and what overall policies will be followed when it comes to lobbying efforts to influence government decisions. The scientific advisors are clinical neurologists who specialize in multiple sclerosis. Many of them also carry out research activities in addition to their clinical work.
   The next important group is the paid staff of the society and, in the case of a large society, they can number in the hundreds. Their salary and benefit packages are on par with workers in similar jobs in both the private and public sectors. Importantly, the staff, for the most part, puts into action the policies and plans of the scientific advisors, that is, the neurologists. There is a very strict adherence to this and no deviation or independent thinking is tolerated. The staff members are like soldiers who do what they are told and are not expected to contribute to the scientific or public policies of the society. They are simply the “go-betweens”, the neurologists and the all those seeking information from the society. Notably, most staff members are not affected by MS.
   By far the greatest responsibility of the staff is to raise money by running various fund raising projects. Most of staff time in spent on this critical activity which is understandable given the majority of the money raised goes to pay staff salaries and benefits. Staff members also arrange some programs for people with MS in terms of education but this activity is rather minor in terms of actual time and effort expended. The staff also fields questions from persons with MS and, as noted previously, the provided information is only that sanctioned by the scientific advisors (neurologists).
   The board of directors of a given national society is most often composed of people who usually have good connections for fund raising from corporations or who have strong political connections. Usually a few persons with MS are included on a board but, in most cases, the majority of board members are not affected by MS. One or more staff members also usually are part of the board.
   Most board members have at best a rudimentary understanding of science in general and the science of MS in specific. They have very little influence on any major policies of the society and, in most cases, simply rubber stamp the scientific and political policies determined by the neurologists and implemented by the staff. Their main responsibility seems to be ensuring that the society is on
a firm financial footing and discussing the merits of proposed fund raising campaigns.
   The final group in a national MS society consists of the members themselves and they, for the most part, are persons affected by MS. They are the consumers of the products of the society which consist mainly of information dictated by the neurologists and packaged by the staff. Such information is both hard copy and web-based. Some members act as volunteers and volunteer activities are related to both money raising activities and to helping other people with MS. The members essentially have no say in terms of the main policies of the society although on a local level they can help to get new member services initiated.
   In summary, a national MS society spends most of its time raising money which is used to pay fund-raising costs, the salaries and benefits of the staff members, and substantial administrative expenses. Such expenses require about 80-85% of all money collected. The amount left over is mainly used to fund research projects approved by the scientific advisors (neurologists) and, not surprisingly, projects of former and current advisors usually are well funded. Proposals from “outsiders” don’t fare so well.
Past Situation
   In the past, everything went along rather smoothly with the society advertising the need to raise money to cure MS, with such a cure being attainable through the research activities funded by the society. Given the severe disabilities sometimes associated with MS, the need for finding a cure for MS is not a hard sell, and the large MS societies raise tens of millions of dollars every year. In the 60 years this routine has been going on, the research funded by the societies has not brought us anywhere even remotely near the prospect of developing an effective treatment for MS. This impressive failure has only led to louder calls for more money for more research.
   The scientific and medical information provided by a national MS society is entirely centred on drug therapies that have been approved for use. The staff members strongly advocate the use of such drug therapies and almost all other proposed therapies are ignored, discouraged and/or denigrated. The main government lobby efforts of the societies usually are to fight for the approved use of the drugs.
   It is imperative to appreciate that most (often all) of the scientific advisors of the societies and the societies themselves have strong financial ties to the pharmaceutical companies which manufacture and market the approved drug therapies for MS. The most blatant of such ties is that of the NMSS of the United States. It partners with drug companies and gives substantial grants to them.
   The existence of such financial ties readily accounts for the policy that only drug therapies are advocated and that the value of such therapies is never, ever remotely questioned. These financial ties also create a serious conflict of interest for the neurologists and MS societies when it comes to any proposed, non-drug therapy and that is one, big reason why non-drug therapies are ignored or downplayed by the societies.
   There can be no doubt that the national MS societies are there mainly for the benefit of the neurologists (scientific advisors) in that they provides them much needed research funding. The societies also provide an excellent vehicle for promoting drug therapies which are financially very important for the neurologists. Of course the societies are also there for the benefit of the staff members who make a good living from keeping everything running smoothly and ensuring the information from the neurologists reaches the desired destinations.
   Before the advent of CCSVI, the drug therapies were the only conventional medical therapies available. By advocating such therapies, the societies could easily claim to be acting in the best interests of persons with MS even though such advocacy was driven mainly by the best interests of the neurologists and
the societies themselves. Whether or not the use of the current drugs is really in the best interests of persons with MS is a completely separate issue and will be explored in a separate document.
CCSVI Rocks the Boat
   The sudden emergence of CCSVI as an important factor in MS, and the great promise of CCSVI treatment for slowing and perhaps even halting MS disease progression for many, have caused a great problem for MS societies around the world. Given all that we now know about CCSVI and its treatment, the national MS societies would best serve the interests of persons with MS by immediately funding a major, comprehensive research program which definitively tests the effectiveness of CCSVI relief in the next few years. Furthermore, it would also be in the best interests of persons with MS if the MS societies lobbied to have CCSVI treatment available as soon as possible given the health problems associated with having impaired venous drainage from the brain and the many hundreds of credible, experiential accounts of very significant positive changes following CCSVI treatment.
   The MS societies have studiously avoided funding any clinical trial studies for CCSVI treatment as was clearly demonstrated by the rejection of proposals from top CCSVI researchers by North American national MS societies. (e.g. University of Buffalo, Stanford University, McMaster University). Notably, those who got their proposals accepted seem to have either very strong ties to the pharmaceutical industry (e.g. Wolinsky at U of Texas) or do not know what they are doing. A fine example of this latter category is Dr Kathleen Knox at the University of Saskatchewan who recently was quoted as saying “The biggest difficulty her team faces, is that they don’t know how to test patients to see if they have the blocked veins”. This is a stunning admission of incompetence and shows the type of researchers favoured by the national MS societies when it comes to CCSVI “research.
   Some national MS societies are actively lobbying their respective government NOT to allow CCSVI treatment. A fine example of this is a recent letter the director of the Ontario division of the MS Society of Canada wrote to the Ontario Health Minister emphasizing that the province should not fund any CCSVI testing or treatment. The notice on the website of the Multiple Sclerosis Society of Canada says it all - “the MS Society does not recommend that people with MS be examined or treated for CCSVI outside of an established research protocol”. All in all, any thought that MS societies are acting in the best interests of persons of MS must be abandoned. So who’s best interests are they serving with their actions?

   When it comes to CCSVI, the interests of the neurologists and the societies are best served by having CCSVI marginalized, by not funding any CCSVI treatment research, and by lobbying the government to not allow any treatment of impaired venous drainage in persons with MS despite the obvious health hazard such a condition represents. The reasons for such actions are straightforward.
   If CCSVI treatment by venous angioplasty turns out to be far more effective than the current drug treatments, and there is every reason to expect it will be, then MS drug revenues will plummet precipitously. Such a huge loss of revenue will have a devastating effect on the financial well being of MS neurologists and the national MS societies themselves. Furthermore, persons with MS will be treated primarily by interventional radiologists, thus adding to the financial losses of the neurologists. There is no question that any activity which helps to bring the implementation of CCSVI treatment forward is not in the best interests of the neurologists and the national MS societies that they control and everyone is well aware of this indisputable but somewhat awkward fact.
   Because of the advent of CCSVI, we now have an unprecedented situation of conflicting interests. What is in the best interests of persons with MS is clearly not in the best interests of both the neurologists who provide the scientific guidance for the MS societies and the staff of the societies who put into effect the policies of the neurologists.
The Current Reality
   Not surprisingly, the best interests of the neurologists and the society staff members will always trump the best interests of the persons with MS. Thus the policies and actions of the national MS societies have been to avoid any funding of proposed CCSVI treatment studies and to lobby government bodies not to provide any CCSVI treatment. They also advise persons with MS not be tested or treated for CCSVI despite the obvious medical need for such treatment (blocked veins are hazardous to one’s health).
   The neurologists and the MS societies also have instituted a policy of casting doubt on the validity of the CCSVI concept and on the safety of CCSVI treatment. This has even gone as far as blatant fear-mongering when it comes to having venous angioplasty to relieve CCSVI. One good example of this recently appeared in a governmental health report written by MS neurologists. The writers claimed that the only venous blockages that exist in persons with MS are clots caused by angioplasty and the only results of venous angioplasty are injuries to the vein. This is of course sheer nonsense but, as they say, truth is the first casualty in any war.
   The current actions of the national MS societies regarding CCSVI are entirely rational once the structure of the societies is understood. The societies are acting in the best interests of the neurologists and staff members as they always have and always will. Unfortunately, when it comes to CCSVI, such actions are not in the best interests of persons with MS. However, it is the false perception that the national MS societies are there primarily to serve the best interests of persons with MS that has created the shock and disappointment with the current actions of the societies in regards to CCSVI. When it comes to the policies and actions of the national MS societies, persons with MS must fully realize that they are lower in priority than the neurologists and staff members. The CCSVI issue has clearly demonstrated this beyond any reasonable doubt.
Consequences of the Actions of the National MS societies
   We now have sufficient data to say that, each day a person with MS suffers the consequences of impaired venous drainage, they are doing harm to themselves and such a reality has to be clearly understood. It has been said, “MS Never Sleeps” and one of the main reasons for this is that impaired venous drainage never sleeps and this serious pathology is causing problems every day for persons with MS. Thus it logically follows that every dollar the national MS societies raise is potentially doing harm to persons with MS because that dollar is potentially contributing to actions that are designed to delay the availability of CCSVI treatment for all persons with MS.
   Given the above, it is clear that the interests of persons with MS would be best served by halting any support of national MS societies and by supporting groups which are actively promoting the need for CCSVI treatment research and government support for the availability of CCSVI treatment as soon as possible.
Summary
   The advent of CCSVI has revealed the highest priorities of the national MS societies. These are actions and policies that are in the best interests of neurologists and society staff members. The interests of persons with MS are a distant third in this contest of competing interests. Continued support for national MS societies is potentially harmful for persons with MS because of the societies’ deliberate lack of appropriate and much needed actions regarding CCSVI. All persons affected by MS should be supporting organizations which are funding clinical trials to test the effectiveness of CCSVI treatment and which are lobbying governments to make CCSVI treatment widely available in the near future

Aspen Grove

Willowy women with saplings,
tiny branches extended,
reaching to receive sustenance                               
photos snapped to record
 memories draped gracefully
quaking and shimmering in the branches of time

Aspen Grove by Ruth-Ann Neil
photos courtesy of Danial Neil

Wordsworth

INTIMATIONS OF IMMORTALITY FROM RECOLLECTIONS OF EARLY CHILDHOOD

I
THERE was a time when meadow, grove, and stream,
The earth, and every common sight,
To me did seem
Apparelled in celestial light,
The glory and the freshness of a dream.
It is not now as it hath been of yore;--
Turn wheresoe'er I may,
By night or day,
The things which I have seen I now can see no more.
II
The Rainbow comes and goes,
And lovely is the Rose,
The Moon doth with delight
Look round her when the heavens are bare,
Waters on a starry night
Are beautiful and fair;
The sunshine is a glorious birth;
But yet I know, where'er I go,
That there hath past away a glory from the earth.
III
Now, while the birds thus sing a joyous song,
And while the young lambs bound
As to the tabor's sound,
To me alone there came a thought of grief:
A timely utterance gave that thought relief,
And I again am strong:
The cataracts blow their trumpets from the steep;
No more shall grief of mine the season wrong;
I hear the Echoes through the mountains throng,
The Winds come to me from the fields of sleep,
And all the earth is gay;
Land and sea
Give themselves up to jollity,
And with the heart of May
Doth every Beast keep holiday;--
Thou Child of Joy,
Shout round me, let me hear thy shouts, thou happy
Shepherd-boy!
IV
Ye blessed Creatures, I have heard the call
Ye to each other make; I see
The heavens laugh with you in your jubilee;
My heart is at your festival,
My head hath its coronal,
The fulness of your bliss, I feel--I feel it all.
Oh evil day! if I were sullen
While Earth herself is adorning,
This sweet May-morning,
And the Children are culling
On every side,
In a thousand valleys far and wide,
Fresh flowers; while the sun shines warm,
And the Babe leaps up on his Mother's arm:--
I hear, I hear, with joy I hear!
--But there's a Tree, of many, one,
A single Field which I have looked upon,
Both of them speak of something that is gone:
The Pansy at my feet
Doth the same tale repeat:
Whither is fled the visionary gleam?
Where is it now, the glory and the dream?
V
Our birth is but a sleep and a forgetting:

The Soul that rises with us, our life's Star,
Hath had elsewhere its setting,
And cometh from afar:
Not in entire forgetfulness,
And not in utter nakedness,
But trailing clouds of glory do we come
From God, who is our home:
Heaven lies about us in our infancy!
Shades of the prison-house begin to close
Upon the growing Boy,
But He beholds the light, and whence it flows,
He sees it in his joy;
The Youth, who daily farther from the east
Must travel, still is Nature's Priest,
And by the vision splendid
Is on his way attended;
At length the Man perceives it die away,
And fade into the light of common day.
VI
Earth fills her lap with pleasures of her own;
Yearnings she hath in her own natural kind,
And, even with something of a Mother's mind,
And no unworthy aim,
The homely Nurse doth all she can
To make her Foster-child, her Inmate Man,
Forget the glories he hath known,
And that imperial palace whence he came.
VII
Behold the Child among his new-born blisses,
A six years' Darling of a pigmy size!
See, where 'mid work of his own hand he lies,
Fretted by sallies of his mother's kisses,
With light upon him from his father's eyes!
See, at his feet, some little plan or chart,
Some fragment from his dream of human life,
Shaped by himself with newly-learned art;
A wedding or a festival,
A mourning or a funeral;
And this hath now his heart,
And unto this he frames his song:
Then will he fit his tongue
To dialogues of business, love, or strife;
But it will not be long
Ere this be thrown aside,
And with new joy and pride
The little Actor cons another part;
Filling from time to time his "humorous stage"
With all the Persons, down to palsied Age,
That Life brings with her in her equipage;
As if his whole vocation
Were endless imitation.
VIII
Thou, whose exterior semblance doth belie
Thy Soul's immensity;
Thou best Philosopher, who yet dost keep
Thy heritage, thou Eye among the blind,
That, deaf and silent, read'st the eternal deep,
Haunted for ever by the eternal mind,--
Mighty Prophet! Seer blest!
On whom those truths do rest,
Which we are toiling all our lives to find,
In darkness lost, the darkness of the grave;
Thou, over whom thy Immortality
Broods like the Day, a Master o'er a Slave,
A Presence which is not to be put by;
Thou little Child, yet glorious in the might
Of heaven-born freedom on thy being's height,
Why with such earnest pains dost thou provoke
The years to bring the inevitable yoke,
Thus blindly with thy blessedness at strife?
Full soon thy Soul shall have her earthly freight,
And custom lie upon thee with a weight
Heavy as frost, and deep almost as life!
IX
O joy! that in our embers
Is something that doth live,
That nature yet remembers
What was so fugitive!
The thought of our past years in me doth breed
Perpetual benediction: not indeed
For that which is most worthy to be blest--
Delight and liberty, the simple creed
Of Childhood, whether busy or at rest,
With new-fledged hope still fluttering in his breast:--
Not for these I raise
The song of thanks and praise;
But for those obstinate questionings
Of sense and outward things,
Fallings from us, vanishings;
Blank misgivings of a Creature
Moving about in worlds not realised,
High instincts before which our mortal Nature
Did tremble like a guilty Thing surprised:
But for those first affections,
Those shadowy recollections,
Which, be they what they may,
Are yet the fountain light of all our day,
Are yet a master light of all our seeing;
Uphold us, cherish, and have power to make
Our noisy years seem moments in the being
Of the eternal Silence: truths that wake,
To perish never;
Which neither listlessness, nor mad endeavour,
Nor Man nor Boy,
Nor all that is at enmity with joy,
Can utterly abolish or destroy!
Hence in a season of calm weather
Though inland far we be,
Our Souls have sight of that immortal sea
Which brought us hither,
Can in a moment travel thither,
And see the Children sport upon the shore,
And hear the mighty waters rolling evermore.
X
Then sing, ye Birds, sing, sing a joyous song!
And let the young Lambs bound
As to the tabor's sound!
We in thought will join your throng,
Ye that pipe and ye that play,
Ye that through your hearts to-day
Feel the gladness of the May!
What though the radiance which was once so bright
Be now for ever taken from my sight,
Though nothing can bring back the hour
Of splendour in the grass, of glory in the flower;
We will grieve not, rather find
Strength in what remains behind;
In the primal sympathy
Which having been must ever be;
In the soothing thoughts that spring
Out of human suffering;
In the faith that looks through death,
In years that bring the philosophic mind.
XI
And O, ye Fountains, Meadows, Hills, and Groves,
Forebode not any severing of our loves!
Yet in my heart of hearts I feel your might;
I only have relinquished one delight
To live beneath your more habitual sway.
I love the Brooks which down their channels fret,
Even more than when I tripped lightly as they;
The innocent brightness of a new-born Day
Is lovely yet;
The Clouds that gather round the setting sun
Do take a sober colouring from an eye
That hath kept watch o'er man's mortality;
Another race hath been, and other palms are won.
Thanks to the human heart by which we live,
Thanks to its tenderness, its joys, and fears,
To me the meanest flower that blows can give
Thoughts that do often lie too deep for tears.

Photo Courtesy of Danial Neil

The Twins (Matt and Dan Berukoff)

Defending MS treatment


Published: August 27, 2010 5:00 PM
Regarding the Aug. 17 story, Brothers Fly to Mexico for Controversial MS Treatment.

My twin brothers, Matt and Dan Berukoff, who had treatments in Mexico for their CCSVI, are doing very well. We will share more information when they return.
We cannot understand why Lonnie Facchina, coordinator of the MS Society’s Kootenay chapter, made several negative statements about our trip without talking with us. It was the journey of our lifetimes prepared with careful research and instead of supporting and wishing my brothers well as MS patients, they were knocked down.
In fact, her area of expertise is not medical advice about venoplasty. I think this is why the MS Society, playing the role of research scientists and doctors, is dragging down the Canadian medical system in reference to one of the most exciting medical breakthroughs in multiple sclerosis in decades.
If she would rationalize these statements to our family and I’m sure the public would be interested because whether the MS Society is on track or not, medical history is being changed around the world and Canada is a non-participant in treatment protocols.
I sincerely hope there was no information drawn from the recent Albert Health Services bulletin now described as incomplete and full of false claims.
In the story, a “rogue clinic in Albany, NY” was mentioned.
What qualifies a clinic to be called rogue and who can make this judgment? For example, Matt and Dan’s doctor in Mexico has 24 years experience as one of their top vascular surgeons. Is he a rogue doctor because he extended a hand to help them and 17 other Canadians with congested veins?
Could the term “malpractice” be extended to doctors who know their patients are suffering from venous anomalies and do nothing about it because health boards cry “controversial and unproven?”
Statement: “venoplasty is prone to failure – the veins collapse.” One patient’s veins constricted out of four cases mentioned.
Would most people agree that a 75 per cent success rate in good blood flow is more successful than drugs where the standard rule is nine per cent effectiveness in randomized trials? Many cardiovascular surgeons now use 15 to 20 mm balloons with better results than Dr. Zamboni’s protocol of 10 mm balloons. Every day 75 venous angioplasties are done in many parts of the world (over 2,000 procedures so far) and this number continues to rise. There have already been “statistical improvements in cognition and motor function,” and MRIs confirm fewer new brain lesions.
Statement: “Clinics are popping up everywhere and you have to pay a lot of money. The MS Society doesn’t like that.”
Why are so many people talking about how the MS Society is fomenting this rebellion under the sentiment of protecting us with more scientific trials that do not include treatment? How can doctors gather data without treatment of blocked veins and follow up? The MS Society has several high-priced lobbyists who strangely seem to overpower real doctors’ rights to do their jobs as vascular surgeons.
They even seem to overpower government regulators in order to approve CCSVI within the public health care system. What an illogical, sad and hurtful reversal of order for Canadians with MS and Canada’s health care budgets. The good news is many politicians are starting to listen to their constituents.
In the story, Facchina suggests the Berukoffs “see the MS Society as pandering to big pharmacy and administrative bureaucracy.”
Is this wrong, as shown with information from the MS Society’s own website where six drugs are approved as therapy . . . nothing else. This is the greatest injustice because the MS Society has no other options for treatments besides drugs versus a walk-in mechanical procedure. One of the drugs listed is Tysabri. The latest news account from Biogen, the company that produces this drug, reports five more cases of brain infection with Tysabri patients which brings the total number of cases to 63 as of Aug. 4 and the number of deaths at 12. Regulators say the “benefits of the medicine outweigh the risks.” Be honest. The term “risky” best describes which situation . . . a procedure performed under local anesthesia where most patients are discharged within one or two hours or taking Tysabri for life?
Lack of optimism about a “cure” was mentioned. After 60 years of drug pandering, is there anything that even comes close to the treatment of MS with CCSVI that hopefully can replace current drug treatments?
We do agree on one point. We need more trials to help standardize clinical procedures among investigators. There needs to be a more global perspective to document the prevalence of venous problems with MS conditions versus healthy individuals with no restricted blood flows.
We need more after-care and follow-up measurements of neurological assessment of the central nervous system, along with certain measures of disability and restriction in daily life whether used for drug or endovascular therapies.
We need more clinical evidence to assess the long-term effects of these venoplasties in restoring normal blood flow which in effect may slow down or even halt the inflammatory and demyelinating processes.
But these clinical trials and treatments should be done in Canada by our own qualified vascular surgeons and interventional radiologists. New specialists should be trained so we can take our rightful professional place at the top of the research and progress. We need to be active participants in International Societies for Neurovascular Diseases rather than trying to reinvent the theory.
Currently what some might consider Third World countries now hold the crown while, in Canada, non-medical lobbyists bind doctors’ hands and make research rules. As only non-medical expensive lobbyists, the MS Society must not stand in the way of doctors and let them do their own research and treatments. Let Canadian doctors shine on the world stage and celebrate the healthy progress of their patients.
Stop the absurd situation where a MS Society co-ordinator, well meaning as she may be, rather than supporting MS individuals, berates their choices for health freedom. Even more absurd is that this situation is being played out on a national scale where Canada’s renowned medicare system is sadly dragging its feet.

Mary Berukoff

Castlegar

 
 
 
 
 
 
 
 
 
 
photo courtesy of Danial Neil
Nuttall's Cottontail (special concern"blue list") living at Hester Creek Winery
Status: Special Concern: Alpha-numeric code: n/a
Reasons for Designation:
  This rabbit was first recorded in Canada about 70 years ago and has since increased its range in the Okanagan, where it may have reached the maximum possible extent of its distribution. Remaining rabbit habitat in the Okanagan is less than 8000 hectares, increasingly fragmented, and continues to be lost to urbanization and agriculture. The total population size, based on available habitat, is probably less than 3500 individuals. Rescue potential from Washington is minimal because of the declining availability of habitat. There are substantial uncertainties about the current area of occupancy, which may have declined over the last few decades as habitat has been lost.

SIR (Society Of Interventional Radiologists)

Society Of Interventional Radiology Supports Research For New M.S. Treatments


27 Aug 2010

Recognizing that venous interventions may potentially play an important role in treating some patients who suffer from multiple sclerosis -- an incurable, disabling disease -- the Society of Interventional Radiology has issued a position statement indicating its support for high-quality clinical research to determine the safety and effectiveness of interventional M.S. treatments. SIR's position statement is endorsed by the Canadian Interventional Radiology Association and will be published in the September Journal of Vascular and Interventional Radiology.

"The Society of Interventional Radiology would like to be actively involved in developing evidence-based therapies for the potential treatment of patients with multiple sclerosis," said SIR President James F. Benenati, M.D., FSIR. "Completing high-quality studies -- for example, on chronic cerebrospinal venous insufficiency (CCSVI, a reported abnormality in blood drainage from the brain and spinal cord) and interventional M.S. treatments -- should be a research priority for investigators, funding agencies and M.S. community advocates," added Benenati, who represents nearly 4,700 doctors, scientists and allied health professionals dedicated to improving health care through minimally invasive treatments.

About 500,000 people in the United States have M.S., and SIR understands the public's desire to advance treatment for M.S., generally thought of as an autoimmune disease in which a person's body attacks its own cells. Currently, medicines may slow the disease and help control symptoms. The role of CCSVI in M.S. and its endovascular treatment (through a catheter placed in a vein) by an interventional radiologist via balloon angioplasty and/or stents to open up veins "could be transformative for patients and is being actively investigated," said Benenati. "The idea that there may be a venous component to the etiology (or cause) of some symptoms in patients with M.S. is a radical departure from current medical thinking," he noted.

"SIR recognizes the challenge and the potential opportunity presented by promising early studies of an interventional approach to the treatment of M.S.," said Benenati. SIR is moving rapidly to "catalyze" the development of needed studies by bringing together expert researchers in image-guided venous interventions, neurology, central nervous system imaging, M.S. outcomes assessment and clinical trial methodology, he added. While the use of balloon angioplasty and stents cannot be endorsed yet as a routine clinical treatment for M.S., SIR is committed to assuming a national leadership role in launching needed efforts, said Benenati.

SIR's position statement agrees with M.S. advocates, physicians and other caregivers that the use of any treatment (anti-inflammatory, immunomodulatory, interventional or other) in M.S. patients should be based on an individualized assessment of the patient's disease status, his or her tolerance of previous therapies, the particular treatment's scientific plausibility, and the strength and methodological quality of its supporting clinical evidence. "When conclusive evidence is lacking, SIR believes that these often difficult decisions are best made by individual patients, their families and their physicians," notes "Interventional Endovascular Management of Chronic Cerebrospinal Venous Insufficiency in Patients With Multiple Sclerosis: A Position Statement by the Society of Interventional Radiology, Endorsed by the Canadian Interventional Radiology Association."

If interventional therapy proves to be effective, M.S. patients should be treated by doctors who have specialized expertise and training in delivering image-guided venous treatments, said Benenati. Interventional Radiologists pioneered balloon angioplasty and stent placements and use those treatments on a daily basis in thousands of patients with diverse venous conditions. "Interventional radiologists are steeped in a tradition of innovation and invention -- of pioneering modern medicine with the devices, drugs and methods to treat patients minimally invasively," said Benenati.

Source: Society of Interventional Radiology

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Article URL: http://www.medicalnewstoday.com/articles/199131.php
Main News Category: Multiple Sclerosis

Also Appears In: Radiology / Nuclear Medicine,



 photo courtesy of Danial Neil________________________________________

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CCSVI:The How and the Why ::: by Dawn Lazelli

This poem reminds me of the beginning of Living Color's song, "The Cult of Personality." The recording starts with a sound byte from Malcolm X, "...and during the few moments that we have left...we want to talk right down to earth in a language that everybody here can easily understand."

I wrote this poem to explain Dr. David Hubbard's theory of CCSVI in a simple, fun way. Please feel free to spread it around. I only ask that you mention my name, Dawn Lazelli, as the original author.

CCSVI: The How and the Why
(A poem based on the Hubbard Theory)

Why do neuros exhibit anger and hostility?
Maybe what they need is a dose of humility.
Dr. David Hubbard, have you ever heard of him?
He studies CCSVI, and not on a whim.
He has a solid theory about why myelin is lost,
And a way to fix it at a very low cost.
There's oligodendrocytes, but don't ask me to pronounce it,
They're cells that make myelin, I'm here to announce it.
Lack of proper blood flow creates a stagnant swamp,
Without a normal system, the "olies" just get stomped.
An excess of other cells which to olies are a toxin,
Further weaken the poor dears, it's like they're forgotten.
Too much nitric oxide, too much glutamate,
Leftover neurotransmitters, they make olies abate.
Then myelin falls apart, white cells barge in the door,
To clean up the fragments, just like you sweep a floor.
The white cells are not the ones going on attack,
They have a job to do, so please cut them some slack.
So this is Hubbard's theory, why myelin's destroyed,
A viable premise, not the auto-immune void.
Forty years of research, billions of dollars expended,
On a worn-out theory no doctor has cemented.
Hubbard's done the scanning, Hubbard's done the tests,
That show abnormal results in people with MS.
Doctors open blockages in the jugulars and azygous,
To get the system flowing, with good blood they provide us.
As soon as the blood flow is properly restored,
Patients regain function. This cannot be ignored!
Your nerves may not be permanently damaged,
They're in hibernation, they cannot be managed.
There was a study with rats that were diabetic,
Remove blood flow to nerves and they are pathetic.
The nerves do not function. The rats cannot move.
Restore the blood flow and those rats, they improve!
There's evidence that flow relates to nerve function.
Move over auto-immune train, CCSVI's in the junction.
In forty years of research, have you ever seen such promise?
So why is your neuro being a Doubting Thomas?
It's time to give them the research and the statistics,
Demand that they notice. Demand that they fix this.
Demand they join forces with vascular doctors,
Demand this is where they put their research dollars.
If you don't demand and provide back-up facts,
They'll try to push away, they'll call you a hack.
There is evidence that blood effects the nerves!

Now go out there and fight! I know you've got the verve.

Milky Way

"If you are uneasy around spiders, you'll be happy to know that no spiders have wings. However, they can fly, but only when they are tiny. Baby spiders, called spiderlings are fully equipped with web-spinning apparatus and the first product many of them spin is a 'parachute' to take them on an airborne journey."

quote: Nora Bryan

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

"Spiders use simple parachutes to ride the wind wherever it may take them. The tiny creatures, weighing only a few milligrams, typically crawl up to the edge of a blade of grass, stick their backside in the air and release a thin line of silk, like that used to build their webs."

quote: Roxanne Khamsi

Milky Way
~~~~~~~~~~
Only here for a moment then caught up, wisped away like miniscule spiderlings
caught on the hot dragon’s breath of summer
tears must go somewhere,
sadness blown like hot sand grit whipped into my eyes stinging and burning,
salted into my lacrimal ducts like chunks of sharpened debris that I can scratch out of the corners
and fling up into the cosmos like flecks of stardust going home
by Ruth-Ann Neil
August 21, 2010

First Flight

Butterflies began to take flight
The inaugural lift off, flitting all about them
They seemed confused by the light at first
as they reckoned with the renovations to their bodies
but soon lifted above the jars and began to circle
Rising higher and higher like birthday balloons
And beyond the canopy, grasses and wetlands of the free world

Excerpt from "the Killing Jars"
by Danial Neil
Photo courtesy of Danial Neil

Butterfly Soul

Butterfly Soul



I remember..... how you loved them so,
I remember..... you said they were free.
I remember..... the day they spun their cocoons;
I remember..... we waited so long.
I remember..... the day they came from their cocoons,
I remember..... how we let them go.

I remember you went with them.

by SASHA
Photos:
courtesy of Danial Neil

Reformed MS Society

Dear Friend,
OPEN THE SITE HIGHLIGHTED BELOW;
It is incredible

This is your August update from ReformedMS. This report deals with the following:

1. Making CCSVI legal and paid for by your provincial health plan
2. The key arguments against CCSVI
3. Welcome to our full time administrator Elizabeth Zinder de Jesus
4. ReformedMS is included in government consultations
Making CCSVI legal and paid for by your provincial health plan.

We know what living with MS is like. We know that time is not something that those of us that are suffering with MS (or caring for a loved one) and are struggling day by day just to exist, can afford. We know for certain that the treatment of CCSVI provides immediate, significant relief to MS symptoms to most MS patients including progressives. We will not lose sight, that each day of delay, lengthens the suffering of over 40,000 Canadian MS patients. Our objective at ReformedMS is to provide Canadian MS patients relief from pain and suffering b y legalizing the treatment of CCSVI now!

To make the treatment of CCSVI legal, medical policy decision makers must be educated. They need to learn that treating CCSVI not only benefits MS patients, but benefits society as a whole, reduces provincial health care costs, and benefits the medical profession. Health care policy makers must have facts and valid arguments for approving CCSVI, clearly and convincingly presented. Skepticism raised by anti CCSVI forces must be overcome. Bureaucracy is inherently conservative and slow to act. Change in thinking is difficult. ReformedMS provides the push.

The opposition to immediate approval of CCSVI comes from the MS Establishment. (Professional Medical Associations, Neurologists, companies selling MS drugs, and the Canadian MS Society). They have strong organizations with multimillion dollar budgets and heavily funded lobbyist. These folks have a lot to lose if CCSVI is approved as a treatable abnormality. They are on the defensive. They are working the System. They are working for delays. They are praying for some unforeseen calamity to happen that will preserve their portion of the $15 billion annual MS budget.

The Reformed MS Society presents to governments and other decision makers rational arguments for the immediate approval of CCSVI. ReformedMS is the most effective spokesman against the MS Establishment, whose skepticism about CCSVI dominates medical and bureaucratic thinking, with the following arguments:

The key arguments against the immediate approval of CCSVI:

1. The scientific evidence is small, weak and potentially flawed;
2. Double blinded clinical studies are required to prove safety, efficacy, duration of the treatment before CCSVI approval;
3. The Liberation Treatment (angioplasty of the jugular and azygos veins) is potentially dangerous; needs to be tested, does not work on everyone; has been harmful to some;
4 . The link between MS and CCSVI needs to proven;
5. How long veins stay open is problematic;
6. Placebo affect is significant,
7. Anecdotal evidence (individual patients' experiences) is not evidence
8. It is wrong to raise false hope in MS patients

ReformedMS is able to effectively address these arguments head on, put them into perspective and to present valid and scientifically acceptable counter arguments. The treatment of CCSVI provides immediate, significant relief to MS symptoms to most MS patients including progressives. Fighting against CCSVI is fighting against Canadian MS patients. We are starting to prove this to those that are making the decisions. The recent announcement by the Government of Saskatchewan that they will be funding treatment trials is evidence that we are making progress.

Welcome to our full time administrator Elizabeth Zinder de Jesus

Please welcome Elizabeth Zinder de Jesus as our Administrato r. Elizabeth has been spending the last two weeks training on our integrated computer system which she is starting to master. Elizabeth is the first full time paid Administrator that will insure among other things that all monies are properly recorded, mail is answered, and volunteers are kept productively occupied. You can reach Elizabeth at our office between 9 and 5, West Coast Time, at 604-435-4405 or by email zinderj@reformedms.org

ReformedMS is included in government consultations

I am pleased to report that we are also being heard and included by Government. The ReformedMS was included in the August 11, 2010 meeting held by the BC Ministry of Health in Victoria BC and chaired by Ms. Valerie Tregillus. ReformedMS provided the patient focused input and responses to some of the above listed arguments that has been missing from official CCSVI discussions. The purpose of the meeting was to assist the Ministry of Health advise the government on C CSVI policy.

Your support is essential to the success of our cause. We need volunteers in all areas to help us. We need your help to set up small meetings with MS patients and caregivers across Canada.

There will be another update next week.

Warm personal regards,

The Reformed Multiple Sclerosis Society

(A British Columbia Nonprofit Corp. #S-56416, Application for Charitable Status with Revenue Canada is pending ),

Steven Simonyi-Gindele    http://www.reformedms.org/

MS Caregiver and Founding Director

Angioplasty for All

http://www.angioplastyforall.com/

Great people launching a class action in Ontario
Go Tim

Go Brian

Will to Survive ::Megan McNeil

http://www.willtosurvive.org/

PLEASE GO AND VISIT THIS SITE
It is a beautiful site.
Dan Mornar is a very dear friend of mine. He has been through so much and still holds out his hands and heart to help others.
" If I can ease one life the aching.".
Read Megan's story and blog and visit with the sweet people.
Listen to her song....
Dan's son and mine were friends.
Dan's daughter was my friend and his daughter that remains, is also my friend.
Dan's wife is also my dear friend.

Isaac was diagnosed in January 1987.

He travelled on in May, 2000.........

Gossamer

Gossamer
I remember when I was a full ten-spot
gossamer and resplendent in my incarnation
diaphanous and then torn, left on the edges of the garden
with my memories of play with the giggling
cascading cabbage whites, fluttering, flickering, fanning
I hovered above them with my wings still whole
and not understanding the tear of predators
I could dip and zap and dart to elude their beaks seeking my abdomen
then suddenly I was missing a shred of wing
and I couldn’t fly fast anymore and the cabbage whites
taunted me and the other dragonflies out flew me and left me behind
But I grew in wisdom and I have laid my eggs
and they will hatch and fly free and higher than I could ever
have imagined
written by R. Neil
August 17 2010

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The Meaning of a Dragonfly: What Does a Dragonfly Symbolize?
The dragonfly has been a subject of intrigue in every single continent it is found in, and with each civilization, has developed a unique meaning to it, its behavior and its lifestyle.
The word Dragonfly and the family it belongs to, Odonata, have evolved from the many myths associated with Dragonflies and their taxonomic cousins, the Damselflies. The word Dragonfly has its source in the myth that Dragonflies were once Dragons.
The family name Odonata comes from the Greek word for tooth as Odonates were believed to have teeth, it is a verified fact now that while they don’t have ‘teeth’ per say, they have strong mandibles that they use to crush their prey.
Symbolisms of the Dragonfly:
Maturity and a Depth of character
The dragonfly, in almost every part of the world symbolizes change and change in the perspective of self realization; and the kind of change that has its source in mental and emotional maturity and the understanding of the deeper meaning of life.
The traditional association of Dragonflies with water also gives rise to this meaning to this amazing insect. The Dragonfly’s scurrying flight across water represents an act of going beyond what’s on the surface and looking into the deeper implications and aspects of life.
Power and Poise
The dragonfly’s agile flight and its ability to move in all six directions exude a sense of power and poise - something that comes only with age and maturity.
The dragonfly can move at an amazing 45 miles an hour, hover like a helicopter fly backwards like a hummingbird, fly straight up, down and on either side. What is mind blowing is the fact that it can do this while flapping its wings a mere 30 times a minute while mosquitoes and houseflies need to flap their wings 600 and 1000 times a minute respectively.
The awe inspiring aspect is how the dragonfly accomplishes its objectives with utmost simplicity, effectiveness and well, if you look at proportions, with 20 times as much power in each of its wing strokes when compared to the other insects. The best part is that the dragonfly does it with elegance and grace that can be compared to a veteran ballet dancer. If this is not a brazen, lazy, overkill in terms of display of raw power, what is?
 Defeat of Self Created Illusions
The dragonfly exhibits iridescence both on its wings as well as on its body. Iridescence is the property of an object to show itself in different colors depending on the angle and polarization of light falling on it.
This property is seen and believed as the end of one’s self created illusions and a clear vision into the realities of life. The magical property of iridescence is also associated with the discovery of one’s own abilities by unmasking the real self and removing the doubts one casts on his/her own sense of identity. This again indirectly means self discovery and removal of inhibitions.
 Focus on living ‘IN’ the moment
The dragonfly normally lives most of its life as a nymph or an immature. It flies only for a fraction of its life and usually not more than a few months. This adult dragonfly does it all in these few months and leaves nothing to be desired. This style of life symbolizes and exemplifies the virtue of living IN the moment and living life to the fullest. By living in the moment you are aware of who you are, where you are, what you are doing, what you want, what you don’t and make informed choices on a moment-to-moment basis.
This ability lets you live your life without regrets like the great dragonfly.
 The opening of one’s eyes
The eyes of the dragonfly are one of the most amazing and awe inspiring sights. Given almost 80% of the insect’s brain power is dedicated to its sight and the fact that it can see in all 360 degrees around it, it symbolizes the uninhibited vision of the mind and the ability to see beyond the limitations of the human self. It also in a manner of speaking symbolizes a man/woman’s rising from materialism to be able to see beyond the mundane into the vastness that is really our Universe, and our own minds.
The Tall Tales and the short stories
What can one say, for a harmless insect that does not bite, does not sew snakes’ wounds, and definitely does not measure human souls for good and evil, there have been a wide variety of myths and mythology associated with the life and the existence of the dragonfly.
But before we go down to the lore by location, one very striking aspect comes to mind.
Change.
In many regions and as a norm of this day, the dragonfly is considered to be an agent of change and presumably symbolic of a sense of self realization. Self realization from how the dragonfly uses its power to control its movements and so elegantly. And change and evolution is all about the dragonfly’s ability to fly and the way it can be comfortable on water, land as well as the air.
Asia and America
Let’s start with something nice. To the Japanese, it symbolizes summer and autumn and is admired and respected all over, so much so that the Samurai use it as a symbol of power, agility and best of all, Victory.
In China,
people associate the dragonfly with prosperity, harmony and as a good luck charm.
Amongst Native Americans, it is a sign of happiness, speed and purity. Purity because the dragonfly eats from the wind itself
Europe and subsequently Australia
Beginning from calling the dragonfly, the witches’ animal, and that Satan sent it on earth to cause chaos and confusion, to calling it, Ear Cutter, Devil’s Needle, Adderbolt and worst of all, Horse Stinger, which soon spread Down Under, when the British colonized Australia. The name Horse Stinger comes from the misinformed observation that horses that were kicking and stamping around usually had a few dragonflies hovering around them. Fact remains though, that the dragonflies could well have been helping the horse by eating some of the parasitic insects that were doing the actual ‘horse stinging’.
the Welsh call the dragonfly the snake’s servant and think they follow snakes and stitch up their wounds…and continuing with the misnomers, they are called eye pokers and eye snatchers in Portugal.
In Sweden, folklore suggests that dragonflies come around to check for bad souls - to weigh souls to be more ‘accurate’ and elsewhere, believed to sneak up to children who tell lies and also adults who curse and scold, to stitch up their eyes, mouth, and ears respectively.
For a species of insects that have inhabited our planet for almost 300 million years, it is only natural perhaps that they have such a wide and varied perception amongst various civilizations.

Author unknown but greatly appreciated



Photo courtesy of D. Neil

SPRING

Spring



Wet with coastal rains, misted flowers gently bob
In tufts of whispered wind.
I dream of life, of rebirth, of reawakening
Cycles soothe my trembling spirit within
Faith returns sung by birds in glorious symphonies led by
the hand of God
As your eyes look into my soul
I weep with joy

ruth-ann neil

written for Isaac Reiter

in Children’s Hospital
Rm.10
3B (outside on the “deck”)
Looking toward the “Lion’s” on the North Shore

1988

Magnificent Quilt

MAGNIFICENT QUILT

Time slips gracefully into the next moment and soon it has stitched a magnificent quilt of smiles and tears and lumps and bumps.

It smells good, like cookies and flowers and paste and fur from critters.
It is a tapestry of the journey.
Bound tight with the sparkling threads of love and compassion
and snuggled under as we grow up and age with joy and wrinkles on the surface.

by Ruth-Ann Neil

Dec.28 2009

POLISH LIBERATION

http://ccsvi-ms.ning.com/video/my-polish-catheter-a-tireless

FANTASTIC LADY WITH LOTS OF ATTITUDE AND HUMOUR

MATTHEW'S STORY/ REFORMED MS SOCIETY

http://www.youtube.com/watch?v=l9syfTlcTrs&feature=related

watch this:)
 this is a retired GP who had the procedure done in India

Mary Berukoff's second Letter to MS Society Canada (Savoie)

From Easy to Serious Questions for MS Society of Canada and Mr. Savoie, CEO


Thank you for your recent letter called
CCSVI: New Hope for MS? By Yves Savoie, President and Chief Executive Officer, Multiple Sclerosis Society of Canada
    Matt and Dan, my twin brothers, are going to Mexico this week to open their restricted veins. One report states “there is considerable delay in contrast enhancement of both arterial and venous systems…right jugular enhancement is noted at 103 seconds… the left jugular vein optimally enhances at approximately 225 seconds…It is abundantly clear there is significant delay in both arterial and venous contrast enhancement ...the left jugular vein particularly demonstrates delayed or diminished blood flow.” AIM Medical Imaging MRI Centre.. attending physician Dr. Henderson
    They are going because hope is keeping them alive for a normal and better future. They are going because they are informed enough about the scientific evidence that unplugging congested veins will result in better blood flow which may dissipate some of their MS symptoms over time.
   Mr. Savoie, you have provided some easy answers with little hope for their future because the serious questions with life-changing answers have yet to be addressed. We hope you will read this letter, dig a little deeper, and answer the questions that really matter.
   Your first comment:
The MS Society is privileged to play a role in better understanding CCSVI and look forward to seeing research results, as quickly as possible, in order to best help those living with MS.
   Serious questions:
So what kinds of research studies have been recently approved with the CCSVI tag? It seems the 7 studies with small selected groups are mostly designated to radiology and neurology specialists to compare pictures of restricted veins. Will researchers take the next obvious step to open up blocked veins or will they not be permitted because that would be considered treatment? See descriptions
http://mssociety.ca/ccsvi/pdf/Research%20funding%20recipients%20-%2....

What is your timeline in discovering or replicating vein irregularities in a double blind studies specifically set for large trials for single drug reactions in normal versus sick people? It is a clear assumption that 60 years of experimenting with the brain’s neurons have delivered very few positive testimonials…(estimated 9% effectiveness vs 97% improvement to some degree with better blood flow.) It is common knowledge that most medications involve large randomized trials because huge numbers are needed to offset marginal effects.

Your question: What is CCSVI?...CCSVI as a condition in which the venous system is not able to efficiently remove blood from the central nervous system

Serious question: Why not initiate clinical trials that study both structure and function at the same time with vascular specialists who can actually help to improve blood flow? At the same time, open up communication with many international doctors who are actively learning about veins, right balloon sizes, right stents if necessary, better outcomes with the azygous vein which is difficult to image, and evaluating techniques and long term results.

Your question: What is the MS Society’s position on CCSVI?

The concept of CCSVI as a cause of MS, and the use of stents or balloons to widen veins as treatments, are ideas that need to be replicated and validated in much larger, well-designed studies

Serious question: What if, scientists need to rethink some other concepts for the cause and progression of MS as an autoimmunity disorder? After all, the conventional wisdom about demylienation where the immune system attacks the body's own cells is theory only with an unknown origin, an unknown trigger, no known cure, and is still a mystery within the medical fraternity. Oddly, the link between vascular abnormalities and MS was seen at least 30 years ago (Dr. Schelling) but was largely dismissed by the medical world. In the meantime, if your focus is to prove blood flow is a causal factor, not a side-effect, this could reasonably take decades in the same manner as current experimentation with the immune system. Because MS is such a complex disease, double blind studies may prove unfeasible because clinical outcomes are so subjective and the natural history so irregular.

Has there ever been a double blind study for any other form of angioplasty or heart transplants?

Besides, the serious question is how to improve blood flow and reduce reflux, a standard procedure for several other conditions.

Your question: What are some of the research questions that need to be answered?

First, there must be a consensus about how to image narrowed veins—this will take research.

Serious question: What is wrong with the current state-of-the-art methods available such as MIR, MVR, and Doppler Ultrasound? In time, there may be more standardization, but many vein occlusions are found only with catheter venoplasty actually on site rather than on scans. This is still the Gold Standard for assessing veins, including the azygouz vein, a main contributor to venous outflow resistance.

Your comment: There also has to be a clearer understanding of the relationship between narrowed veins and MS...and the best way to treat narrowed veins.

Serious question: Why not, take into account, that there are possible 2,000 to 3000 venous angioplasties already performed by world class doctors, interventional radiologists and vascular surgeons? Lead from their results. Recent formation shows the International Society for Neurovascular Disease, CCSVI seminars, conferences and other symposiums are actively discussing the best techniques to open veins and keep them open. The history of MS is changing and Canadian doctors are missing out on this rapid learning curve.

Better yet, take MS out of the equation. In fact, CCSVI is a condition in its own right that needs intervention…Venous angioplasty is not experimental or controversial.

Your comment: Some of this research can be accomplished in a relatively short time, but as with any MS therapy, measuring the real impact requires long-term observation.

Serious questions: First, is there any illusion here that a minimal physical intervention has implications similar to long-term drug use? Here’s where the so-called impact becomes really confusing. Hopefully, you have seen the numerous effects of CCSVI treatment as video testimonials at this time because clinical trials are not allowed which would also show similar benefits …people walking better, less fatigue, less brain fog, better speaking...even after two days. Is it any wonder it has been dubbed Liberation?

Show me any MS drug with a similar impact or story. This is the sharpest point that hurts the most…there is nothing else with hope for improvement!

For example, one of the most recent drugs is FTY720 (fingolimod) described as “an encouraging and important milestone for the MS community," said Dr. Patricia O'Looney, Vice President, Biomedical Research at the National Multiple Sclerosis Society” Further down is a long disclaimer: You should not place undue reliance on these statements. Such forward-looking statements reflect the current views of management regarding future events, and involve known and unknown risks, uncertainties and other factors that may cause actual results with FTY720 to be materially different from any future results, performance or achievements expressed or implied by such statements. FDA Advisory Committee Unanimously Recommends Approval Of Novartis Investigational Treatment FTY720 To Treat Relapsing Remitting MS07 Aug 2010

If you’re concerned about proper protocol, why did the FDA granted FTY720 priority review status in February 2010, reducing the standard 10-month review to six months?

Second, here’s a personal question: Given a choice, what would you choose... a simple safe 45 minute treatment to open restricted veins or swallowing some “sphingosine1-phosphate receptor (S1PR) modulators, which work by retaining certain immune cells (lymphocytes) in the lymph nodes, preventing them from reaching the central nervous system and causing damage.”

Would you rather pay $1500 for this treatment or have Health Care pay out $30,000 yearly?

Remember, the MS Society approved the anti-body drug Tysabri in November 2004 which was pulled from the market the next year after cases of a rare but lethal brain inflammation in some patients. It was reintroduced in 2006 under an FDA-approved distribution program.

The problem is that the newer drugs work — although in different ways — by suppressing parts of the immune system. That leaves patients vulnerable to infections and even cancers.

Ashton Embry - New Studies Show the MS Drugs Don’t Slow Progression:

http://tinyurl.com/25jrtmk

Your question: Why does the process take so long?

There are many important questions relating to CCSVI and MS, and the research must be done properly so we will have answers that can guide people with MS, their physicians, the MS Society and governments in making reliable decisions about treatment options.

Serious question: Do you really believe that your guidance as a fundraiser and the MS Society will competently “open the box” for treatment options now considered non-conventional and even dangerous? Honestly? What are your medical qualifications? See The Saddest, Maddest Letter in Reply to Canada’s Health Minister...previous blog.

Your question: Can CCSVI be tested or treated now?

The CCSVI concept is not a proven therapy for MS… not widely tested or treated at this time in Canada.

Serious question: What do you consider a proven therapy? Your MS Society Home Page lists the following six therapies: Avonex Interferon beta-1a, Betaseron Interferon beta-1b, Extavia Interferon beta-1b , Copaxone Glatiramer acetate, Rebif Interferon beta-1a, and Tysabri Natalizumab.

Is the implication here that only drugs are proven therapies? Pharmaceutical companies have never been in the business of making people well but managing symptoms for long term care customers.

Your statement: While testing and treatment is available in several other countries, Dr. Zamboni recommended that people not be treated until more research is completed.

Serious question: Why do you think this statement has been frequently quoted out of context with such miscomprehension? Dr. Zamboni, a vascular surgeon and prolific scientific writer, understands the importance of long term, longitudinal studies following this procedure. This cannot happen if you are forced to travel to other countries for a single treatment with limited follow up. Why not mention that he has also advised for medical treatment for compassionate reasons if drugs have had no effect?

Your question: What is the MS Society of Canada doing to bring pressure on the Governments… to make CCSVI screening and treatment available?

… Over the past 15 years, the MS Society has led advocacy efforts for inclusion of scientifically proven drug therapies on provincial drug-funding plans, once Health Canada approval has been secured.

Serious question: Have you seriously read this answer, word for word?

Your words: If the treatment of CCSVI is proven to be a valid therapeutic treatment option for MS, then the MS Society will advocate to make it widely accessible.

Serious question: Who is the MS Society with such power and competence to advocate for medical scientific procedures? Your advocacy so far has been woefully couched in drugs and more drugs. You are part of the buck-passing, finger-pointing cycle...talk to your family doctor who says talk to your neurologist who says it is unproven because pharmaceuticals can only deal in drugs as a lifetime solution which MS charities add to their proven therapies and vascular surgeons are shut down by Internal Review Boards in hospitals while MS patients are dying. This is the reality and your stated position.

Why should we trust you now? If supporting evidence shows that stenosis (vein restriction) is a factor in the onset of autoimmunity...then drug companies have been shamelessly exploiting medical experimentation on the immune system of long suffering MS patients for decades. And the National MS Society and MS Society of Canada have been riding shotgun all the way.

You recently stated after the contentious election of board members (who still have not disclosed their backgrounds) that the MS Society’s “house” is divided. But remember this is the house built on behalf of MS patients and you have closed the door indefinitely, if, you believe that, somehow, you will structure our medical rights without our input. Do not treat us as servants to follow your “competitive” bidding and condone your high salary. Treat us as equal partners and advocates who can see that the status quo is simply not acceptable. “We must insist that new ideas be taken seriously, and demand that the vested interests of those who have profited from our collective misery not hold sway any longer.” (Mark)

Mr. Savoie, in conclusion, it seems you have made a sincere case in simple rhetoric and a little bravado (words like privileged, first MS organization to establish research competition). To the public, it may even sound that the MS Society is riding with the times and looking forward to “rigorous” research to facilitate standardization and safety.

To the MS sufferers we can see through the smoke and mirrors. Your main excuse is lack of randomized trials that work best for drugs and you have overtly omitted undeniable, indisputable clinical evidence of CCSVI and treatment results.

But you now have the opportunity to answer these serious questions:

Why keep CCSVI research exclusive of treatment? If doctors find a vein confluence…use a gentle balloon to open it.

What is a reasonable timeline in discovering or replicating similar vein patterns and procedures to treat them with the understanding that every body is different?

What if, there are other concepts for the cause of MS as an autoimmunity disorder? What if, the standard MS inflammatory response is more related to vascular structures and the immune system is only trying to naturally help relieve toxins?

What is the best way to plug into current CCSVI procedures from 1000’s of case studies with improved results to maximize scientific research and not “reinvent the wheel”? Time is such a precious commodity for this devastating disease.

Why is it a good idea to set up a tracking system to gather data about everyone who is tested and treated within a global community of doctors?

Why not listen to MS patients who are interested in opening their diagnosed stenosis (vein restrictions) to pursue an elective procedure and pay a fee for having it done if a certain lack of trials restricts it from government funding? At least the money would stay in Canada and you will honour your mission statement to respect “the right of individuals to make decisions as it relates to their personal health.”

We look forward to your thoughts and ongoing dialogue.

In the meantime, there is no hope with the MS Society outside of hamburger sales and Christmas dinners where 48% of money raised goes to pay administration salaries.

There is no hope when non-medical personnel at the MS Society override professional doctors.

There is no hope if the MS Society aligns itself with neurologic circles, as well as with the pharmaceutical industry, which stands to lose untold billions in the sales of drugs designed to suppress the immune system.

We will not live in a hopeless house with your rules. This is the 21st century and we will choose diagnostic tests and treatment for ourselves with health-care professionals we want. You may block some of the reality…but you will not continue to block our veins with simple bureaucratic answers.

There is hope with abundant evidence and astonishing testimonials worldwide.

There is hope in seeing real pictures of once narrowed veins that are open and flowing freely with benefits of lesser symptoms.

There is sadness that these medical breakthroughs will happen in countries outside of Canada.

There is hope that CCSVI will reduce the huge spiraling health care costs in provincial budgets in tough economic times.

There is hope, even with the many variables about understanding CCSVI and the new treatment, that only experienced doctors will provide the proper information.

There is a magnificent gratitude for all the doctors (and politicians) who have offered their hands and expertise to help this unprecedented possibility to repair broken lives.

There is hope that CCSVI is the most important advance in MS research in 50 years, maybe ever.

There is optimism that the treatments for Matt and Dan will provide first steps to recovery. The excitement is real…the worst fear is no treatment and a terrible subsistence. The Mexican surgeons are looking forward to the challenge of twins’ venoplasties. Medical images and results will be gladly shared.

For the first time in years, my brothers are viewing the world with a glass full of hope, not half empty or filled with drugs. And that is making all the difference, with or without you.

MARY BERUKOFF

GINGER MacQueen's Rebuttal

Ginger MacQueen’s Rebuttal to Paula Simon’s Article in The Edmonton Journal
(Simon's article is being picked up on the wire, like a virus)


Dear Editor,

Clearly Paula did not do her research! Zamboni's theory is not based on veins blocked by iron as she states in her article. CCSVI is chronic cerebro spinal insufficiency and is theorized to be caused by blocked internal jugulars and/or azygos veins that drain the blood from the brain back down to the heart. The iron deposits are believed to be the lesions in the brain and spine that have always been classic signs of multiple sclerosis. Multiple sclerosis by definition means "many scars".
   To call Zamboni's theory a "unicorn" is so grossly childish it boggles my mind. CCSVI is not a fairy tale creature, a blind alley or a false hope. CCSVI is a real medical phenomenon that has been scientifically validated and published in medical journals. Veins are made to move blood.
   Blocked veins are therefore bad. Regardless if there is a link between CCSVI and MS any person with dangerously blocked veins should be able to have them fixed whether they have a pre-existing condition of MS or not.
   I am appalled at Paula's cynical and heartless view of not following Saskatchewan's lead in funding research and clinical trials. If we all thought this way we would have never had such surgical breakthroughs like heart bypass and brain surgery! So essentially, Ms. Simons is telling the roughly 75,000 Canadians afflicted with MS is that they are not important enough for our government to risk funding studies that could potentially rid them of suffering and consequent death? Simons says "...it would be an enormous error in judgment for the Alberta government to sanction or fund this surgery-- or to divert any of the province's limited research and public health dollars toward clinical trials of a technique both dangerous and deeply dubious."
   The fact that she uses terms like "dangerous and deeply dubious technique" only intensify the overall ignorance of this story. Angioplasty has been performed for many, many years and the risk of death is rated at 1 in 1000 and that is for ALL types of angioplasties. The benefits from angioplasty far outweigh the 1 in 1000 risk or it would not be performed in our country. These studies and clinical trials will put to rest any doubts whether this treatment is beneficial or merely placebo effect.
   Of course Paula could not help but grab hold of the two recent studies by the Swedes and Germans that did not find any correlation between MS and CCSVI. The truth of both those studies has been out for awhile now. (maybe Paula didn't get the memo) Neither of those groups followed the Zamboni scanning protocols so to try and compare them is ridiculous. She goes on to state that the angioplasty referred to as the Liberation treatment is only used to treat relapsing remitting MS. How she ever came up with that tidbit is beyond me. Thousands of patients with ALL types of MS have been reaping the benefits of this procedure! I know many PPMS and SPMS patients who are now out of their beds and wheelchairs! There has never, ever been any treatment for PPMS or SPMS before this. There has never been any treatment that has made so many MS patients feel this good!
   So naturally, it must be placebo effect right? Placebo effect can account for a number of positive effects but cannot be given credit for bladder and bowels spasms going away, balance returning and gait improvement and eye sight improving. She also cites in her article that Alberta Health has stated that "As of today, no Canadian neurologist has found significant or sustained improvement upon examination of patients who had venous angioplasty performed, despite the fact that most returning patients report feeling better and sometimes note improvements in sensation or walking."
   I would like to know who these neurologists are that are examining the returning "liberated" patients? My neuro won’t even see me anymore since I have had the angioplasty! He is not interested! Why would they be? If this angioplasty works then it is proof positive that MS is vascular and all these years the neuros have been treating us with ineffective and often dangerous drugs. If I were a neuro I would be very worried right now.
   Another statement by Paula: "Provinces only have so many medical research dollars to spend -- and a full-fledged clinical trial of Zamboni's surgery would be both extremely expensive and ethically complicated given the inherent dangers of cranial venous angioplasty." I agree about the expense part but when you compare it dollar for dollar to the millions per year that we as patients are spending on ineffective drug therapies there is no contest! I am glad she brought up ethics! How ethical is it that medical professionals and members of MS Societies can own “stocks” in pharmaceutical companies and be paid to do research and clinical studies by these pharma companies? That is a HUGE conflict of interest! When Alberta does go ahead with trials and studies the ratio of neuros to vascular specialists should be even at the very least.
   Another profound statement by Simons: "We mustn't politicize or sentimentalize the independent grant process, allowing elected officials to decide which pet project to fund.
   Money needs to be channeled to the most promising research, research that meets every rigorous, peer-reviewed scientific standard."
   Brad Wall of Sask. And Ed Stelmach of Alberta did not independently decide to fund trials and research. Hundreds of thousands of Canadian voters have been inundating our politicians with their desire for help in this matter. Anecdotal or not, thousands of MS patients are better after the angioplasty and Stelmach and Wall listened and, thankfully, are doing their jobs!

Ginger MacQueen