Wednesday, September 8, 2010

Lindsey Kuglin's opinion from the Walkerton Herald-Times

Feds abandon MS sufferers in Canada

By Lindsey Kuglin
writing for the Walkerton Herald-Times
http://www.walkerton.com/

It’s horrifying to watch a young and healthy person deteriorate so rapidly, that person is like an old and frail version of themselves in a matter of months.
Those who know someone with multiple sclerosis are very familiar with this disturbing picture.
Researchers don’t know why, or how the debilitating disease attacks. After 200 years they still don’t know what it is.
News out of the federal health ministry last week says to those of us waiting for a cure that they don’t want to find out.
Health Minister Leona Aglukkaq announced last Wednesday that they won’t fund a promising clinical trial for the so-called “liberation therapy.”
That’s a pretty hard pill to swallow for those affected by the disease.
She said that the therapy, which involves angioplasty of veins in the neck, is too risky because it’s based on an unproven theory.
So prove it.
Why, when Canada has one of the highest rates of multiple sclerosis IN?THE?WORLD, are we not the ones to hold clinical trials? Why are we relying on someone else to find the cure?
An Italian physician, Paulo Zamboni, has put forward the theory that blocked veins in the neck or spine cause iron to build up in the brain, and he says that’s the cause of MS. He proposes to open the veins by inflating small balloons in them as a treatment.
Canadian Head Research Institute Dr. Alain Beaudet said that the procedure is too risky to try on Canadians. So Canadians are trying it themselves.
Many of our desperate citizens are going overseas and spending thousands of dollars for liberation therapy.
In a country, as rich as we are, and given that we have 55,000-75,000 people living with MS, there should be no reason that they’re going to India for the treatment.
Here in Canada, MS is treated with a course of daily medication that, according to my brother-in-law living with MS, costs about $1,500 a month. And those drugs just ease the symptoms, they don’t fully treat them.?But under the drug haze, the symptoms are still there.
My brother-in-law is 32 years old, and he can’t walk the couple blocks to the store. He falls down a lot, and somehow, he’s able to laugh it off, but it’s not funny at all.
How discouraging it must be to not be able control your body, and then when something comes along that might help, to be shut out. But Aglukkaq hasn’t had the last word. MS?patients are going to rally on Parliament Hill on Sept. 22 to try again.
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In other news, a cure for a bleeding heart has been found, and the feds were the first in line for it.
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http://www.walkerton.com/editorial/article/92011
Photo courtesy of Danial Neil

Monday, September 6, 2010

Litaneutria Minor; Agile Ground Mantid

Litaneutria minor, or the agile ground mantis, is native to the drier regions of the southern Okanagan Valley and some dry, desert areas in the U.S.

Also referred to as L.Minor and is a small “praying mantis”.
It likes to perch (sit) very still on antelope bush (which is also endangered less than 10% left in British Columbia.)
It preys upon other insects (moths,flies,grasshoppers katydids and crickets) but also upon it’s own species.
Cannibalism is most common during mating season, if it occurs, but is not common in most mantid species.
Ground mantids have been observed “chasing down” prey instead of adopting the “hold perfectly still”approach.
The ground mantis is very aggressive in the insect world and will defend itself against predators or “prey” that is putting up a fight.
It will make itself appear larger than life by stretching it’s arms out all the way and standing really tall to frighten off predators.
The males have diaphanous wings and the females, smaller wings. They are capable of short bursts of flight usually near their ‘habitat” such as the antelope bushes.
They can adapt their colouring to their environment to remain “safe” from predators.
They can be predated upon by spiders and other insects when they are in the “nymph” stage of maturity.
They are also prey as well to birds, snakes, and other native predators.
In the late summer and fall the female ground mantid lays her eggs. They are small “egg masses” and are sometimes on the ground or attached to low bushes or ground cover.
She might lay more than one “capsule” with 50 to ~400 eggs.
The nymphs are mature in about 13 weeks.
Female ground mantid lives ~156 days and Male ground mantid ~47
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Mantid


Praying on the ground
Praying ground mantid
agile and running after prey
Praying for sustenance
Praying for antelope bush to remain
for prey to come and prosper for millenia
Silent cycle of prayer
Pray


by Ruth-Ann Neil
September 5, 2010

photo courtesy of Danial Neil
picture taken just above Oliver, BC

Wednesday, September 1, 2010

THE TWINS ARE BACK!!!!!!!!!

TEN BIGGEST LESSONS LEARNED FROM MY BROTHERS’ CCSVI VENOPLASTY in MEXICO


These are some personal thoughts (no advice) about a recent trip to the Clinics of the Heart in Los Cabo San Lucas. I accompanied my twin brothers who have been diagnosed with CCSVI as well as MS, to open their vein restrictions there. Yesterday, they returned home, proud of doing the treatment and looking forward to their "new legs" and lives.
Lesson 1: What a number of different people are affected with MS…but who wants to be 30 years old and sentenced to a wheelchair existence? Some had suffered for 53 years...some had been diagnosed for just 4 months. Farmer’s wives, lawyers, accountants, real estate developers, business owners, insurance brokers, health care workers, even a physiotherapist who at one time cared for MS patients…it didn’t matter the occupation or environment. MS had struck them all at various stages. Some were bound in wheelchairs or scooters...others had leg braces and canes, some shuffled along with help of partners.
No one seemed to have the illusion that treatment for CCSVI was a magic catheter or wand. Thoughts of liberation were linked to small steps of improvement. Articulate understanding of the issues…intelligent conversations…Nothing is working for me...and I’m getting worse. I’m having reactions to drugs. Why not open our blood veins...that’s all we ask for. I just want to play with my children again.
There was a community of shared feelings...instant bonding. It was commented about the numbers of wives and husbands still supporting their spouses...families who persevered together.
Only words for the MS Society were frustration, disappointment and betrayal.
Lesson 2: The treatment protocol was similar for all 17 people that week. Each person received a MRI with venography, Doppler Ultra Sound of neck veins and neurological assessment scale of 8 functions.
The medical staff was efficient and understanding.
The catheter insertion was a tiny opening. The opening of the balloon was temporarily painful but dealt with medication if too uncomfortable. If an occluded vein proved too difficult to open, then as a last resort, a stent was used. A couple people did receive it.
After the treatment, the next day, the neurological test was reviewed again to check for signs of improvement. If no improved evidence, then the doctor would want to do another treatment.
Lesson 3: The number of varied responses following treatment was to be expected. Everyone talked about the unique treatments to open their veins and degrees of recovery. This was logical because each person started with various symptoms, suffered for different time periods, with different prior health status.
Here are some of the comments shortly after the treatment:
I can see the veins in my hands again...
My daughter’s mouth droop is gone...
My hands and feet are warmer...
The purple discoloration in his foot is gone...
My sense of well-being is clearer...
My numbness on my side is gone…my fingers don’t tingle...
I couldn’t do this before...quick two-step or pirouette....
I don’t have to take bladder control meds...
I can do some of my yoga poses...
Why is everybody’s response so different?
Is it the duration of disease…months versus years?
Is it because of physical fitness prior to treatment? More weight or less weight?
Is it degree of stenosis? Procedures varied from one and half hours to four hours.
It certainly seems, logically, the sooner this condition is treated…the faster the recovery with proper blood flow can be expected.
Lesson 4: A big surprise was the unexpected nature of twin brothers’ irregular veins. The imaging and actual venoplasty showed very similar restrictions and blockages in both jugulars and azygous veins. Could be this be a genetic factor here? However, both brothers have widely differing symptoms at the beginning and different results after treatment. It would seem that similar vein structures didn’t seem to play a part in development of MS symptoms.
Therefore, what kind of practical information can neurologists hope to conclude by studying veins for the next two years when twin brothers can have such similarities and differences?
Lesson 5: Another exciting possibility that warrants more investigation is physiotherapy following venoplasty. On one hand, patients get the benefits of normal circulation and vein reflux control. But on the other hand, for people like Matt, who had increasing problems walking with a spastic left leg, now some exciting possibilities were seen with physiotherapy. It makes total sense that leg muscles that haven’t been used properly for years now need to be restimulated to make original connections to normal walking.
In fact, this is exactly what happened. A registered physiotherapist did some neuro-stimulation on his left thigh quads and noticed his tibia anteriors (front leg muscles) were also interacting. He could curl his left foot toes with the neurostimulators on or off. She was amazed because it showed there was nothing wrong with the nerves in his leg but they needed more reconditioning to reprogram the brain to correct footdrop and inversion spasticity.
Can this be the other side of the coin…proper circulation then proper stimulation for reco-ordination and mobility?
Lesson 6: No doubt, there is a worldwide medical revolution happening. A young MRI radiologist said he wanted to be known as an imagist because the growing medical emphasis is to image the body to see internal structures and implications for disease. The focus is to try and correct abnormalities versus taking a host of synthetic drugs that often mask symptoms at best...at worst, create a cascade of side effects. Correct structural problem…correct body’s own homeostasis.
What causes veins to constrict or azygous veins to twist seems largely unknown.
It is understandable why neurologists are standing their elitist ground on their 100 year old theory about autoimmunity. Nobody likes to be wrong. Some have even refuted images of better blood flow. Double blind studies are a scientific paradigm but when a new theory takes flight without need for prescription drugs and side effects and such informed patient advocacy, then due diligence must be paid to honor patients’ choices for care.
Lesson 7: There is so much more scientific research needed. But for the first time in history, putting together a data base of empirical evidence is on the shoulders of people who have undergone the procedure. What is Health Canada doing? Still looking to see if venous problems exist...still investigating equipment to image veins correctly…as mentioned by Dr. Traboulsee (head of UBC MS Clinic) on a recent radio show as to why he couldn’t accelerate his research. Still planning a double-blind randomized study where 50% MS patients have blockages and 50% of non-MS patients do not with “blinded” radiologists is no longer feasible in the vortex of world research.
How can any doctor image veins, find blockages and leave untreated. Would any doctor find angina or atherosclerosis in arteries and leave untreated? Do you have to be a rocket scientist to know a healthy circulatory system includes function of both arteries and veins?
Even the latest scanning techniques do not always show vein abnormalities...the true test to find and open restrictions is via a catheter.
The latest 2.4 million dollars awarded by MS Society for “imaging” will probably turn out to be a stop-gap, superfluous red herring. Dr. Traboulsee pointed out that he has funds to study veins but no research money to treat them. Even more hopeless is when his research partner, Dr. Knox, admits she doesn't know how to test patients to see if they have blocked veins which “may or may not be related to MS.” It is so indescribably sad to note other doctors are applying their knowledge and training new doctors while Canadian authorities are still trying to find similarities or the proper equipment.
Lesson 8: Most importantly, true CCSVI research really begins after the venoplasty. Currently, foreign clinics can only make initial observations and the patient is gone without the opportunity to study long term evaluations of improvements. They are shortchanged in their ability to report their clinical data. What if, there is restenosis? What exercises help to restore normal activities? Is medication to be continued? What after care is available with family doctors? How can medical documents to be shared in professional communities?
Lesson 9: A special thank you to Dr. Moguel. His reputation as one of the world’s top cardiovascular specialists is well deserved. He worked to open stubborn veins for as long as he could and stenting was an option only in the most difficult cases. The procedures were scanned, documented and will be shared as reports within the medical community. He attended one of the group suppers to see "patients getting healthier and being happy." What a special opportunity is being missed by Canadian doctors!
Special gratitude is given to the other doctors, nurses and technical assistants who applied rigorous testing, procedures and understanding to their foreign patients. Who would dare cast the first stone that the Mexican health system is lesser than ours because they are not restrained by bureaucratic mazes to prove constricted veins even exist? The doctors found 100% of MS patients had vein restrictions of one degree or another and did something about it.
My brother, Matt, is now walking without a cane…and our little town is impressed.
Lesson 10: As you can see, the journey opened more questions than answers. There was nothing observed that first-class Canadian doctors could do as well with the greater benefits of proper clinical follow-up and a chance to celebrate a return tohealth. Ten years from now, with exponential growth, more formalized training and maturity of technique, these foreign clinics will probably continue to lead the research. Our country has fallen behind the learning curve, not because our cardiovascular surgeons and interventional radiologists aren’t also brilliant, capable and eager to learn. Other countries understand that it is the entrenched neurologists with non-adaptive mindsets and non-medical MS Society directors who have appointed themselves guardians, allocate research grants, influence decision makers in order maintain nice salaries with approved drug therapies.
   I felt embarrassment, not pride, in trying to explain why an advanced country like Canada is discriminating against its own citizens. What is wrong with our society as a whole when Facebook and YouTube become a medical source of information? How has this severe medical reversal happened…when patients need to gather clinical evidence to show their doctors how new scientific discoveries work…instead of doctors “doing no harm and helping their patients.” Stop this hunkering down mentality imposed by neurologists and non medical lobbyists that Canadians must cross this "experimental, controversial territory" by themselves. This is not a competition. The MS Society must back off playing “house doctor.” Canadian vascular and interventional specialists deserve better. Canadian citizens deserve better. World wide science and advancement and co-operation will make our world a better place and our right place in it.

PPS: Dr. Traboulsee ...something else to add to your research data file. My twin brothers had CCSVI treatment in Mexico. Now both are thinking about starting a local contracting business versus possible institutionalizing for one brother. How would your “wonderful drug therapies and stronger ones yet to come” stand up to this CCSVI therapy?    sincerely, Mary Berukoff
















Photo courtesy of Danial Neil                                                                                                                         

Tuesday, August 31, 2010

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.

Monday, August 30, 2010

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

Sunday, August 29, 2010

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

Saturday, August 28, 2010

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