"Lend me your ears!'

By ANONYMOUS!!!
Lend Me Your Ears


Friends, Americans, Canadians, lend me your ears;
I come to mourn People with MS, not to praise them;
The Pain that men have lives after them,
The good is oft interred with their bones,
So let it be with these souls ... The noble MS Society
Hath told you they are wrong:
If it be so, it is a grievous fault,
And grievously hath they answered it ...
Here, under leave of the MS Society and the rest,
(For the MS Society is an honorable institution;
So are they all; all honorable men and women)
Come I to speak at our patients decline...
They are my friends, faithful and just to me:
But the MS Society says they are wrong;
And the MS Society is an honorable institution….
MS patients brought much testimony home to Canada,
Whose ransoms did the general coffers fill:
Did this Patient body seem wrong?
When that the injured have cried, they hath Liberation:
Wrong should be made of more useless stuff:
Yet the MS Society says they are wrong;
and the MS Society is an honorable institution.
You all did see that on the procedure
We have one hundred times presented a healthy glow,
When one hundred times improved: Is this wrong?
Yet the MS Society says Patients are wrong;
And, sure, they are an honorable institution.
I speak not to disprove what the MS Society speaks,
But here I am to speak what I do know.
You all did wish patients healthy once, not without cause:
What cause withholds you then to help them?
O judgement! thou art fled to brutish beasts,
And men have lost their reason…. Bear with me;
My heart is in the coffin there with fellow MS Patients,
And I must pause till it come back to me.


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


Mark Antony:

Friends, Romans, countrymen, lend me your ears;
I come to bury Caesar, not to praise him;
The evil that men do lives after them,
The good is oft interred with their bones,
So let it be with Caesar ... The noble Brutus
Hath told you Caesar was ambitious:
If it were so, it was a grievous fault,
And grievously hath Caesar answered it ...
Here, under leave of Brutus and the rest,
(For Brutus is an honourable man;
So are they all; all honourable men)
Come I to speak in Caesar's funeral ...
He was my friend, faithful and just to me:
But Brutus says he was ambitious;
And Brutus is an honourable man….
He hath brought many captives home to Rome,
Whose ransoms did the general coffers fill:
Did this in Caesar seem ambitious?
When that the poor have cried, Caesar hath wept:
Ambition should be made of sterner stuff:
Yet Brutus says he was ambitious;
And Brutus is an honourable man.
You all did see that on the Lupercal
I thrice presented him a kingly crown,
Which he did thrice refuse: was this ambition?
Yet Brutus says he was ambitious;
And, sure, he is an honourable man.
I speak not to disprove what Brutus spoke,
But here I am to speak what I do know.
You all did love him once, not without cause:
What cause withholds you then to mourn for him?
O judgement! thou art fled to brutish beasts,
And men have lost their reason…. Bear with me;
My heart is in the coffin there with Caesar,
And I must pause till it come back to me.

JUDY PENTZ: Response to BAD WSJ ARTICLE AND FLAWED STUDY

Assessment of the Doepp (German), Sundström (Sweden) and Zamboni Papers by J. Pentz
• Posted by Judy Pentz on August 6, 2010 at 9:28pm

Reference:
WSJ article by Tom Burton(Wall Street Journal)(see any conflict of interest there?)Look who has the stock interests!!!
LA Times article by Shari Roan
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
I have multiple sclerosis and I have CCSVI. I am not an MRI specialist, but Dr. Mark Haacke, of McMaster University, is. I do know how to have an MRI, just ask me. I had the pleasure for 2 hours straight the other day. I see no pictures of veins in the results. I have listened to Dr. Haacke speak, at least in the W5 broadcast. As with everything on CCSVI, we are at the VERY beginning as far as real research is concerned and finding out, and developing proper protocols. Joan Beal, of the CCSVI Alliance, said she was looking forward to hearing Dr. Haacke's response to the Swedish paper. So am I. The below are my thoughts and conjecture from a common sense perspective. I do think there are some basic truths.
I have read over both the Doepp and Sundström papers and that of Zamboni. Paolo Zamboni took 10 years to fully understand and come up with the protocol for diagnosing and treating patients who also have MS.

This is in response to the Wall Street Journal article by Tom Burton's article, and also the LA Times article by Shari Roan, both of which flagrantly omit all of the following.

It is difficult to compare the two new papers to that of Dr. Zamboni due to the time it took either Doepp or Sundström to come up with a protocol. They are both neurologists did so without understanding of the venous system They came up with their own protocols after just a few just a few months in an attempt to diffuse Zamboni's work.
Doepp claims to have found no CCSVI by doing a Doppler ultrasound, holding the instrument at one place on the neck within a proximity to a particular valve.
Zamboni's Doppler examines the entire neck from the base of the cranium down and around the collar bone. It also can reveal where the stenosis actually is.
When I had my Doppler it was done correctly and refluxive blood found in both jugulars. If the instrument had been held at one single location on my neck, how could the length of the vein and venous flow even be seen? I was found to have almost a full second of refluxing blood in each vein.
On Sundström's paper, they claim to have used MRI (Magnetic Resonance Imaging) which is not generally used for veins. An MRV (Magnetic Resonance Venography) can see the venous activity in the brain, even in 3 dimensions, but are not always accurate.
I have heard from Dr. Byung-boong Lee, Dr. Carlos Mora (a neurologist), both from Georgetown University, and Dr. Paolo Zamboni himself states that MRV's are not the best to detect CCSVI. Even my uncle, and interventional radiologist who was in charge of five hospitals in Columbus Ohio says ONLY a venogram is the "gold standard" which does not involve an MRI/MRV/MRA machine at all.
Furthermore, a proper MRI/MRV to actually show this requires a specialized test and machine that is only in the beginning stages of development. This is something that may become more prevalent in the future (my opinion), once studies and proper techniques/ protocols to detect CCSVI advance and more information is discovered and confirmed.
These facts discredit both the German Doepp paper and the Swedish Sundström paper, as well as the fact they put this together within a few months with little apparent grasp of looking at veins.
I was advised by someone in Sweden who actually called and spoke to Dr Sundström personally that he had no intention of trying to replicate Zamboni's results or to even use one of Zamboni's carefully developed protocols.
It is very disconcerting that so much attention be given to studies and papers that are far less credible than the 10 year researched paper of Paolo Zamboni.
Neither the German Doepp study, nor the Swedish Sundström are credible in the least. What is even 4 months compared to 10 years, especially when those trumpeting these results are not venous specialists, but neurologists. And they did these in a very short few months. Simply not credible.
It is unfortunate that the authors, Mr. Burton, nor Ms. Roan did not read the papers papers involved or consider how haphazardly Doepp and Sundström came up with protocols from a neurologist's perspective in only a few months. I would hope, as a journalist, they would take the time to verify facts and not mislead the public as their extremely similar articles did.

YVES SAVOIE'S RESPONSE TO ME

READ THIS ONE SECOND!!
Dear Ms Neil,
 Thank you for your email of June 16, I apologize for the delayed response. I appreciate you taking the time to bring to our attention your views and concerns and for your feedback on the important topic of CCSVI.
First, I want to note that the Multiple Sclerosis Society of Canada respects and honors the right of individuals to make decisions as it relates to their personal health. In this regard, the MS Society will do its utmost to provide timely, credible and relevant information so that these decisions can be made with as much information as possible.
 The MS Society is proud of our corporate partnerships with Canadian businesses such as RONA and A&W. Our affiliations with these organizations help us to support Canadians living with MS through helping us achieve our fundraising goals and through their capacity to increase awareness about MS across the country.
 On the topic of CCSVI, there is a great deal of information to consider. Dr. Paolo Zamboni observed a link between multiple sclerosis and CCSVI and there remain many questions about the relationship between it and MS. By funding research into CCSVI and MS, the Multiple Sclerosis Society of Canada hopes the relationship between the two will be clarified and that any treatment potential CCSVI may offer can be identified. Dr. Zamboni himself is an advocate for more research and urges people seeking CCSVI treatment to do so only within the context of a clinical trial. The MS Society agrees with this position for two reasons:   1) a clinical trial provides appropriate safeguards for the participants through things like ethics approvals and follow-up care and 
2) clinical trials provide the appropriate protocols for the information that flows from the patients' response to the therapy in a way that will advance research. Although the CCSVI treatment has been performed on a number of individuals, self-assessments of the benefit of a particular treatment does not form the basis for robust scientific evidence.
 While the pace of scientifically rigorous research may seem frustratingly slow, it is critical to producing the very best answers for people living with MS around the world.
 The MS Society is not alone in our position of being open to any possible outcome as we accelerate research and search for clear answers. The Ontario Health Technology Advisory Committee (who advises the Ontario Ministry of Health and Long Term Care), the Quebec Neurologists’ Association, the Collège des médecins du Québec, the Canadian Medical Association Journal, and Alberta Health Services all agree that more research is needed to move this theory forward.
 The $2.4 million that has been committed by the Multiple Sclerosis Society of Canada and the National MS Society (USA) to support seven new research projects focusing on CCSVI and its relationship to MS will help this cause significantly. The funded projects take a comprehensive look at the structure and function of the veins draining the brain and spinal cord in people representing a spectrum of MS types, severities and durations, and compare them to the structure and function of veins in people with other diseases and healthy volunteers. The studies incorporate accepted high standards of experimental blinding and controls designed to provide unbiased results. They also use a variety of imaging technologies including the Doppler ultrasound technology originally used by Dr. Zamboni and his team. I am confident that these studies will bring us much closer to the answers we all urgently seek.
In regards to your comment about the advancements around vitamin D, the MS Society of Canada continues to fund Dr. George Ebers and Dr. Dessa Sadovnick in their joint study, the Canadian Collaborative Project on Genetic Susceptibility to MS. Read the research pages of our website for more information about studies currently supported by the Multiple Sclerosis Society of Canada.
 I hope this information helps to address your concerns. I would like to assure you that the MS Society of Canada continues to stay true to its mission to be a leader in finding a cure for multiple sclerosis and enhancing the lives of people affected by multiple sclerosis while keeping the people affected by MS at the centre of our work.
Sincerely,
Yves Savoie

READ THIS ONE FIRST
Sent: Wednesday, June 16, 2010 3:25 AM

To: The MS Society of Canada
Subject: My views
To whom it may concern
  Firstly, you whom have been "elected" do not represent me as a person with M.S.
   None of you have M.S. I do.
  I am very much dismayed that the old "hamburger" scenario(A&W) is underway in a disgusting "partnership with the Society. I am sure that the "new buddies" will pony up for yet more funding of anything that is deemed by the "out of touch" people that you seem to be.
 To be encouraged to"eat one"...is sick!!
 I know!!!!..study "junk-food consumption in m.s."
  Reminds me of Palin's, "Drill, baby, drill"!
   $400,000???? (contribution to promote MS and hamburgers?)
Where are you going to put that?
Gross.
To encourage consumption of "teenburgers" and promote the aforesaid as a great accomplishment is irresponsible and negligent for peoples health, M.S. or otherwise.
This begs the question why would you as a society accept that "blending" of corporate relationships and "toot" that horn.
 Meat is a LARGE protein...so is cheese (we have leaky blood brain barriers)don't need big proteins to cross it and if you are talking about us people with this diagnosis of M.S. and you are really were promoting health...you would be encouraging HEALTHY choices for food and sponsorship not unhealthy combinations of both.
Probably the "bun is wheat and sugar combined", many of us have celiac too!!
"I will take a side of fries (with a liberal dose of acrylamide) with that"!!!!
Go way back and study heart and brain health. A and W is NOT "good food".
When I went on my 5 k run, food was offered that echoed your trumpeting of A and W!
Cakes with cream filled icing...hot-dogs...chips...juice with 10% real juice(from concentrate), whipped cream on other cake and of course, pop...!!! They are removing these from schools!!! Childhood obesity and heart disease and liver disease in young children from JUNK FOOD!!!
People who are trying to endure the downgrading of our health daily do NOT need this stuff to eat or their "dirty" money from the proceeds of the same.
 Kind of like "blood for oil" and the other oxymoronic situations that drive the "helpless" of the planet like the "sheep" that we appear to be as we must NOT know how to live intelligent lives empowered by our own intellects!
 Do you actually think that we are that unintelligent or do we need to be "grateful" for this generous nail in our coffin??
WHO is actually listening there?
 Perhaps you need to listen to the voices of vascular surgeons and recognize that venoplasty is probably a really good way to alleviate the build-up of inter-cranial pressure from restricted blood flows in our bodies and brains!
CCSVI more than likely IS a condition that exists comorbid with M.S and many other auto-immune issues in the general population and WHY are you not further funding George C. Ebers studies on Vit D and suggest a mutual study of the two bodies of work (Zamboni's as well) as they suggest a big "WHICH CAME FIRST THE CHICKEN OR THE EGG???
Look at the info..low or no Vit D inutero results in improper venous formation=CCSVI
WAKE UP FOLKS and put our money to good use instead of on the "grill" sizzling while Rome becomes a burger(A&W) with carcinogens and stenosed/plugged veins from CCSVI and fat plaques in our arteries from the burgers you want us to eat.
I certainly would have voted for the"renegade" people who better stood for us with their hearts on their sleeves.People with MS and/or their loved ones who wanted to be on the Board and who were rejected.)
Real people..."unscripted". People who "walk and talk the walk"!

Waiting in line for "liberation".
Ruth-Ann Neil

BRAVE MAN

Guelph man hopeful Liberation treatment will cure his MS


August 04, 2010

BY JOANNE SHUTTLEWORTH



GUELPH — From the moment the doctor blew up the balloon and opened the constricted veins in his neck, Mel Roumeliotis said his hands and feet felt warm — a condition he hasn’t known since being diagnosed with multiple sclerosis 15 years ago.

It’s still early days since the Guelph man travelled to India with 10 other MS patients from cities in Canada and the United States to receive the controversial treatment called chronic cerebrospinal venous insufficiency — CCSVI for short — that’s shown some success for patients with MS. Roumeliotis said he is buoyed by his result so far and is hopeful the treatment will halt progression of the disease or even reverse itself.

“I felt instant warmth to my hands and feet and they always used to be cold,” he said describing the procedure in a phone interview from his Guelph home. “I’m in healing mode now, so we have to wait. Time will tell if it’s going to work.”

CCSVI is a procedure developed by Italian doctor Paolo Zamboni who theorized that MS is caused by blockages in the veins in the neck and chest that impair the flow of blood from the brain through the body. The procedure he developed is similar to angioplasty, where balloons are inserted and inflated in a vein, thus opening the blockage.

The procedure, also called the Liberation Treatment, has been in the news of late as many Canadians are flocking to countries like India and Poland where CCSVI is available. It is not available here. At least yet.

Last month, Saskatchewan’s Premier Brad Wall said his province will be the first in Canada to fund research into the therapy but Ontario Premier Dalton McGuinty said the Ministry of Health won’t fund the research or the procedure until it’s been proven effective.

It’s the politics behind the treatment that makes Roumeliotis angry. He raised some $20,000 to cover travel, accommodation and the procedure. He left for India July 25 and returned Aug. 1.

“I had to do it,” he said. “You can’t watch your health diminish, then learn about a promising therapy and not want to jump at it. The government here, they procrastinate so much.

“If this works, I’ll be telling everyone.”

Roumeliotis said the hospital in Delhi was big, clean and professional and he called his surgeon “outstanding.” While the obstruction was in the veins in his neck, the doctor inserted a surgical instrument in his groin and threaded it through his vein to his neck. Roumeliotis was awake during the procedure. He was kept overnight for observation and released the next day.

“It’s not a quick miracle but now the blood is flowing,” the 43-year-old said. “Now we wait.”

His wife Heather, is a nurse and was therefore concerned about flying halfway around the world for treatment. Language and culture differences were among her concerns.

“But not the procedure itself,” she said. “We had first-hand information from someone who recently had it done, so we knew what to expect.

“I know it’s controversial but all 11 patients said they felt something. I’m curious. I’d like to see the studies done.”

Roumeliotis said he’s still adjusting to this time zone and he tires easily. He may have to travel to Hamilton for followup treatment. McMaster University recently linked with Zamboni to further study his treatment.

Joanne Shuttleworth is a Mercury staff writer. She can be reached at jshuttleworth@guelphmercury.com

My Proposal

I want to gather stories/ written pieces/poems/prose pieces/ or journal chunks from people with MS who are journeying with us , be they the "MS'" community...written by them/scribed for them/ /recorded for them or by them/ embracing their experience from a support persons perspective...
support person defined as such

:/spouse/partner/buddy/friend/relative/advocate/friendly physician and so forth

This would be the CCSVI experience/( treated or not)/ (imaged or not)/or watching and waiting/(able to pay for this or not)

I am looking for a publisher or someone who has contacts to help me do this

Funds generated to go to assisting the research and so forth, shining a light and speaking up with a voice/experience of people who often are dismissed!!! 

Ideas/input appreciated

Monarch's Declaration

MONARCH’S DECLARATION

Isaac

We laid him to rest in the spring.
He asked to be tucked into “the warm, warm earth”.
A sweet son. He remains my benevolent angel.
He encountered cancer three times in thirteen years. Much of his life, he spent hospitalized, or on an intravenous at home. His journey was a magnificent adventure.
He met each challenge with courage and humor, whether he lost a body function, or was too tired to do the things we all take for granted.
He always found a new gift to explore, a new soul to help and bless along the way.
As he experienced cancer, I sojourned with M.S..
A year before he died, I tended to his needs in the night.
Isaac watched me limping and was moved to extraordinary compassion.
My beautiful son had tears in his voice, as he expressed to me that he wished “he would get cancer back and die”, so that he could release me from my care giving of him.
He thought that he was causing my disease to worsen by “making me tired”.
He was prophetic in his innocence.

I would have given my life for his.

Isaac was unaware that his cancer had not left but was “on board” and advancing.
I had the precognition and the “mother’s instinct” to pick up the “signs”.
I was already in intense communication with his physicians and arranging the “tests” to find out where the “cancer” was “hiding” this time.

I didn't want to be let go, but I was.

How many of us ever hear that kind of gratitude from someone, or witness such beauty or strength?
He fills his sister’s lives with birdsong and sends swallowtail and monarch butterflies to follow them.
He anoints us with the mist of rains to kiss our cheeks and wash away our sorrows.
Isaac is painting the glorious sunsets that we stand beneath awestruck.
He will always be our sparkling gem, our perpetual rainbow.

His life well lived, is our inspiration to dance in wild abandon and his invitation is
to live every moment in the present and in it's entirety.

Thank you for the gift of your life well lived my son
Mom                                     Ruth-Ann Neil        
Isaac August Reiter  Dec.16 1986--May 30 2010

"Paulo's Mission" of uncommon valour

Currents of Liberty



And so they came
shaking and crying,
the halt and the lame
rolling, tapping, staggering
flying through dark clouds of uncertainty
airborne to be reborn
fear clutching at them and wisps of terror
trailing like the plumes of jet exhaust dissipating

Freedom so tantalizingly close yet ephemeral
in their clutch, flying to the light of possibilities
a genesis in Italy
a birthing of hope

Nascent and ridiculed,
a humble man stepped forward
in courage, brought to life by love
head high and steady with resilience
shouldered on through the barbs of the naysayers
as her gentle beauty fed his soul

and the whisperings of miracles
spread like melted honey across the world
from the boot that has been kicked
heel, toe, heel, toe
spinning in joyful abandon
from the cobblestones of antiquity
uniting, igniting, beginning


illumined




by Ruth-Ann Neil


July 24th 2010
copyrighted
Reprints with permission only