IVCC/CCSVI, liens et articles de ce jeudi.

Publié le par Handi@dy

Barre google de traduction indispensable!

*Intéressant, car on a des nouvelles du congrès Electrims d'octobre où sera invité Zamboni, de bon augure pour les SEPiens?!

CCSVI in MS Toronto : CCSVI
presented by Dr. Zamboni at the next Charcot Foundation Symposium at
ECTRIMS. Well, it's about time. Dr. Doepp and Dr. Khan will be there
(live from the Annals of Neurology) Should be and interesting discussion

 PDF:European Charcot Foundation
Symposium
ECTRIMS 2010 Göteborg
October 13, 2010
12.30 – 14.00
“Chronic Cerebrospinal Venous Insufficiency.
Relation to Multiple Sclerosis?”

*CCSVI and Multiple sclerosis

 A trial for the Zamboni MS treatment is worth trying

*

*

Brothers fly to Mexico for controversial MS treatment

* Diagnosis & Treatment of CCSVI in Multiple Sclerosis Patients

Tories implore NDP to fund MS treatment

*

New study: 85% of Big Pharma's new drugs are "lemons" and pose health risks to users

(l'article confirme la série de vidéos "les médicamanteurs, que j'ai publiée il y a quelques temps,ndlr)

*

Multiple sclerosis charity wins access road appeal

*

Core stability training programmes are valuable for people with MS

*"

CCSVI decisions draws praise

Beth Wock couldn’t help but laugh when she heard Premier Brad Wall’s announcement in late July that Saskatchewan will fund clinical trials of the controversial CCSVI liberation treatment.

For months, Wock has been writing Wall and other members of the provincial government, imploring them to take a deeper look at the procedure, which, in some circles, is being called a new lease on life for multiple sclerosis sufferers.

“I am sure Mr. Wall was probably so sick of getting e-mails from Beth Wock,” she said. “I had to laugh out loud when I was hearing him on TV because one thing I have consistently put in all my letters, is why don’t we make Saskatchewan the leaders for MS treatment. When I heard him say that, I laughed because I have said that so many times to him.”

After getting over that initial laughter, Wock said she became very excited for her fellow MS sufferers. Although she had the procedure done in early July in Mexico, Wock has said she will continue to be an advocate for the procedure in Canada and the right to have it done here.

She said the Wall announcement gives hope to many people who have been searching for a ray of light.

“He’s taken the time to listen to us and he’s responded and that excites us,” said Wock. “It gives us more hope and we have to keep digging at that. We have to make people aware what the possibilities are.”

The CCSVI treatment is based on work by Italian doctor Paulo Zamboni. Zamboni discovered that many MS patients have blocked or malformed veins in their neck and chest which hinder blood flow. He developed a procedure that uses a basic angioplasty technique to open the veins and restore blood flow.

However, the treatment is not available in Canada, forcing many, including Wock, to travel to another country to have it done.

Although Wall’s announcement has been met with praise and excitement from many MS sufferers, there are many who have panned the decision. Despite Wall’s lobbying there are also many provinces that have said they will not follow Saskatchewan’s lead, something that disappoints Wock.

“I was just chatting with a lady on the Internet from Nova Scotia who is really frustrated. They said they were on board with us and now they’re not. But I think Saskatchewan is making a statement. We are getting recognized throughout Canada and that excites me and I’m pleased with that,” said Wock who isn’t surprised that Wall has criticized for his announcement.

“I know who is calling the shots. The drug companies are more powerful, I think, than probably even our prime minister. They have to do what they have to do to keep their jobs.”

Wock initially spoke to The Mercury for a July 21 article in which she talked about having the procedure done in Mexico and the benefits she has seen from it.

Since the initial article published, Wock said she has continued to enjoy more improvements.

“I cannot believe my resistance to heat and I just have so much more energy. When it would get to be hot, I wouldn’t even walk. My taste is coming back, which is really good.

“It’s just subtle things that you didn’t even know were wrong because you lived with them so long. I am starting physio because I have to learn to walk again because my feet still feel so big.”

Wock added that she would also like to thank the community for the incredible support they have shown her and her husband Bob. Since the article came out, Wock has been flooded with calls and well wishes from friends and has also received financial support.

“A lot of people have phoned just to say good luck or that we read the article and it moved us so much. People come up to me and say ‘Beth, it’s so good to see you back again, the spark is back.’”

*

"Conflicts of interest at the Annals of Neurology---A Request from the CCSVI in MS Community


Conflicts of interest at the Annals of Neurology---A Request from the CCSVI in MS Community

par CCSVI in Multiple Sclerosis, jeudi 12 août 2010, à 18:54

QUOTE FROM THE EDITORS of THE ANNALS OF NEUROLOGY on CONFLICTS OF INTEREST:

 

Managing Conflicting Interests in Medical Journal Publishing By Adam F. Stewart, S. Claiborne Johnston, M.D., Ph.D., and Stephen L. Hauser, M.D. December 17, 2008

 

http://www.dana.org/news/cerebrum/detail.aspx?id=14230

 

"As editors, our most inviolable charge is to ensure that the content of our journal is of the highest possible quality, that we always operate in the public’s best interest, and that we never give readers cause to question our independence. Conflicts of interest can appear in many forms, both obvious and subtle. Only by recognizing that conflicts of interest will always exist, that human beings are fallible, and that scientific inquiry is never free from potential bias can we make certain that such conflicts are recognized and managed in a consistent manner and under the full light of disclosure."

 

 

RESPONSE:

 

 

Dear Dr. Hauser,  Editor of the Annals of Neurology--

 

Your publication has rather quickly published two studies which claim to replicate the research of Dr. Paolo Zamboni and his discovery of CCSVI.  Both studies rendered negative results and received much coverage in the lay press.  Yet neither research group contacted Dr. Zamboni regarding his specific testing protocol, nor attempted to utilize the same procedural process in diagnosing CCSVI.  The scanning methods and diagnostic criteria employed were different.

 

We question your independence.

 

As interested parties-- those actually suffering from MS and the caretakers who love them-- we demand that you immediately 

1. PUBLISH some of the many the rebuttals which have been submitted to your journal on the Sundstrom and Doepp studies.

2. DISCLOSE your personal bias towards maintaining MS as an immunological disease.  

3. INVITE vascular doctors to publish their findings regarding the correlation of CCSVI and MS.

4. WORK with the hundreds of doctors that are identifying CCSVI in MS patients around the globe.

 

Only with this transparency can you prove to the world that you are indeed free from bias.  We await your response.

 

signed,

CCSVI in MS"

*

Wednesday, 18 August 2010

GET PAID FOR YOUR OPINIONS!

*

MP urges action on MS treatment

*

par Tessa Rushton, mercredi 18 août 2010, à 15:43

Here's my letter to Dr. Phil advising that I now know it was not him saying those awful things.  It was our "friend" Colin Rose here on Facebook.  I un-friended Mr. Rose as his trash talking on posts was just tripe!

 

"I had written you the other day inquiring about a "quote" I had heard from friends which supposedly came from Dr. Phil. My friend advised me that she was mistaken and we now know the true source of the negative CCSVI/MS comments. Please ignore my last email to you. Thank you, Tessa Rushton"

 

That's why I didn't attack first - but asked if it were true...

 

:)

Tessa

  • Vous et 2 autres personnes aimez ça.
    • Yvonne Andersen hmmm Maybe Dr. Phil will look into CCSVI since so many of us have written to him. I didn't attack him, but did tell him about my improvements and did tell him that I had heard through the grapevine that he had said some negative things about the procedure. LOL Maybe we'll all be called to be on Dr. Phil! lol"

    • *
      the FDA

      The FDA Exposed: An Interview With Dr. David Graham, the Vioxx Whistleblower

      *

      FDA moves to withdraw unproven blood pressure drug

    • *

      The CCSVI train rolls through Manitoba: Who’s next?

    • *

      Essential Health Clinic Logo

    • *

      Baillie says he will support provincial funding into liberation treatment research

    • *

      Brent Wheaton Liberation Treatment for MS

    • *

      Alberta Health to study how best to serve MS sufferers

    • *

      New Website with Graphic CCSVI Tracking Data on Treated CCSVI

    • Patients

    • *

      Patient Information

    • *"
    • click here to expand
    •  
      News
      Aug 05, 2010

      April Morrissey was elated with the medical news coming out of Italy. Word had spread that Dr. Paolo Zamboni, an Italian vascular surgeon had uncovered a potential cause and effective treatment for multiple sclerosis (MS), shedding light on one of medical science’s most enduring mysteries. And with this joyous news, the New Dundee woman, one of an estimated 60,000 Canadians afflicted by MS, cautiously began to feel a glimmer of hope for her future.
      The Internet buzzed that Dr. Zamboni’s research, carried out at the University of Ferrera in Italy, linked MS to Chronic Cerebrospinal Venous Insufficiency (CCSVI) a condition where veins in the neck, and leading to the spinal cord, have become obstructed.
      Zamboni found that a simple balloon angioplasty could open these veins, improving blood flow and reducing MS symptoms.
      Up until this point, medical science had yet to uncover a cause for MS, suggesting that it‘s the result of a malfunctioning immune system.
      So far, an effective treatment has been elusive.
      Morrisey learned hundreds of MS patients had since undergone the procedure in Italy, Poland and India. “Surely” she prayed, “they’ll be doing it here soon too.”
      Little did she imagine that over a year after Zamboni’s findings were announced, the provincial and federal governments were still dragging their collective feet, calling for more studies, before treatment is offered to Canadians.
      Morrissey, 39, had her first “attack” of MS at age 20 while she was studying at university.
      “It started with numbness and tingling in my baby toe and baby finger. I felt no pain, but I was unusually fatigued,” she recalls.
      Worried, she got herself to emergency at the local hospital. She was seen, diagnosed with “a virus” and sent home. The symptoms lasted approximately one week, then faded.
      Her second attack occurred about a year later. Symptoms were similar to the first incident, but this time she had numbness on one side of her face and under one eye. The symptoms were worrisome enough for her mother, a nurse, to make an appointment for her daughter with the family physician.
      He made a referral to a Toronto neurologist. A year passed between the second attack and the appointment. After another wait of several months for a MRI scan, April was formally diagnosed with multiple sclerosis.

      Dealing with the Diagnosis

      She remembers her reaction to the news: “Honestly, I was more concerned with my wedding that was coming up in a month or so than the diagnosis.” April credits the attitude of the Toronto neurologist with helping her deal positively with what might lie ahead.
      “He told me that I had the ‘best’ kind of MS — if there is any ‘best’ in receiving such news. Mine was the mildest form of MS, called ‘remitting and relapsing.’ That means the symptoms come and go, and there was a chance that I might not even have any more attacks at all.”
      The neurologist also advised Morrissey that women like her, in their 20s when they are diagnosed, seem to have a better prognosis than females diagnosed in their early teens, or men, diagnosed after 40.
      Morrissey didn’t have another MS attack for two years. She had entered nursing training and was in her second year of school when the telltale symptoms returned.
      “Numbness and tingling in my hands and feet, but this time I was also having severe pain and blurriness in one of my eyes.”
      She also remembers “wicked headaches” as a spin off from the eye pain.
      A visit to an ophthalmologist revealed optic neuritis, or inflammation of the optic nerve, a common MS symptom. This time she’d need to go on a course of the steroid Prednisone to bring the inflammation down. After a time on the drug, Morrissey’s condition improved and she could resume her nursing studies.  

      Becoming Knowledgeable about Multiple Sclerosis

      Coming to the stark realization that her MS was here to stay, Morrissey vowed to become pro-active and knowledgeable about the condition.
      “I read everything I could on MS. And I started to take supplements, like vitamin D, fish oils and evening primrose oil, all which are said to help. I also watched my diet carefully, cutting way down on red meat and eliminating saturated fats. Exercise became part of my regular routine too.”
      Two healthy pregnancies and two “good labours” followed, with Morrissey virtually symptom-free of MS. “Pregnancy seems to improve MS in many women,” she offers, “and both of mine put me into beautiful remissions.” But a year after the birth of Morrissey and her husband Kevin’s second child, Isaac, she had a full-blown MS attack. The usual numbness was this time followed by loss of mobility, temporary paralysis in one of her hands, and bone-numbing fatigue.
      April was started on Rebif, a “disease-modifying” drug, touted to lessen the frequency and severity of attacks. Three times each week, Morrissey injects herself with Rebif and waits to feel sick.
      “I hate the Rebif because it gives me flu-like symptoms after the injection,” she says. And while she does admit that her attacks have become less frequent on Rebif, she’s noticed that with each episode, it takes her longer to bounce back. “MS does permanent damage to your nerves,” April states. “You’ll never recover to the same degree of physical ability you had before the last attack.”

      Looking Beyond the Mainstream

      Frustrated with the attitude of the mainstream medical community towards MS, a community that she feels only treats her condition with prescriptions, Morrissey decided to investigate how alternative therapies would deal with the condition. She began to see Guelph physiotherapist Terry Moore at his Moore Muscle Therapy and Rehabilitation Clinic. The clinic had experience treating other MS patients.
      For Morrissey, her Guelph visits soon produced a double benefit.
      “I like my physiotherapist’s attitude. He helps me believe that there are steps I can take pro-actively, including specific exercises, to fight the MS.” She also met other MS patients there and was comforted by their fellowship. It was here that Morrissey first heard the news of Zamboni’s “Liberation Treatment.”

      Zamboni’s Startling Findings


      Dr. Paolo Zamboni, an Italian vascular surgeon had begun his investigation of MS after his wife, Elena was diagnosed with the condition. He read everything he found on the subject, and came across early sources that suggested that a build-up of iron in the body might be a factor in the development of MS. Zamboni pondered this information and reasoned that, if indeed MS was linked to an excess of iron, might this not be caused by blockages in the body’s “roadways”— its arteries or veins? Being a vascular surgeon, he was well aware of how such blockages around the heart are cleared — by the straight-forward medical procedure of coronary angioplasty.
      Zamboni put his theory to the test by ordering a Doppler Ultrasound and MRI on Elena. He was astounded and elated by the results.
      In several of her neck veins, including the jugular, there were significant blockages. Blood flow between Elena’s brain and body was clearly being restricted. More significantly and if the old “iron build-up” theory was accurate, the iron was surely causing damage in the myelin sheathing of the cerebral nerves…with MS being the result. 

      Eliminating the Block

      Zamboni scheduled immediate angioplasty surgery for Elena. A catheter was inserted in one of the blood vessels of her groin; the catheter promptly made its way up to the blockages in her neck. A small balloon was then inflated and the blockage was cleared. The results were immediate and dramatic. Elena had been “liberated” from MS. 
      With this success, Zamboni began tests on other MS patients. He found that a staggering 90 per cent of them showed similar blockages as Elena had. The more severe the blockage; the more severe the MS.
      Over a period of some weeks, angioplasties were performed on a total of 65 MS patient, all with venal blockage. All were eager to undergo the experimental procedure. As had been the case with Elena, the results were life-changing, with dramatic improvement of MS symptoms. Two years after the surgery, 73 per cent of the test patients remained MS-free. With just cause, Zamboni called his procedure “The Liberation Treatment.”

      Immediate Reaction Round the World

      An expected storm of reaction resulted from Dr. Zamboni’s research, much of it surfacing on Facebook, YouTube and other social networking sites.
      MS patients worldwide began to beat a ready path to their physicians’ offices, demanding access to Zamboni’s treatment.
      In Barrie, ON, Dr. Sandy McDonald, a vascular surgeon, was particularly interested in the Italian surgeon’s work, and travelled to Italy to study the procedure from him.
      After returning to Barrie, McDonald opened up the Barrie Vascular Imaging Clinic (BVI) and invited MS patients, on referral from their family doctors to seek consultation. In the succeeding weeks, BVI staff also fielded thousands of telephone calls from MS patients themselves.
      “They were heart-rending pleas for help from utterly distraught patients, parents and spouses,” McDonald says.
      McDonald’s early statistics confirmed those of Dr. Zamboni. Over 90 per cent of patients diagnosed with MS had venal blockage in the neck or leading to the spinal cord. The first six of what Dr. McDonald hoped would be “an army” of MS sufferers undergoing “Liberation Treatment” were referred to the Barrie hospital for balloon angioplasty.
      In McDonald’s May 11 address to the government Subcommittee on Neurological Disease of the Standing Committee on Health, he reported that after the procedure “all six MS patients have had significant improvement; four of them have seen dramatic improvement.”

      The Ministry of Health Reacts

      Shortly after McDonald’s appearance before the government committee, he received word from the Ministry of Health that the imaging procedure being done at BVI would no longer be covered under OHIP. McDonald was also advised that if BVI billed clients for the imaging, they would be shut down.
      Hospital referrals that McDonald had made for angioplasty surgery were also cancelled. On the heels of this bad news, notice from the provincial health ministry advised that there would be no further CCSVI surgery for MS patients until government had given the matter “further study.”
      In speaking by telephone to McDonald’s BVI Clinic last week, I was informed by staff that Dr. McDonald continues to book between 25 and 30 MS patients a week for venal scans as part of a double-blinded study for assessing CCSVI and its treatment. He is trying to put together a more extensive test group than preliminary trials first published by Paolo Zamboni.
      “And he covers the entire costs out of his own pocket,” one employee revealed.
      “Dr. McDonald just feels he just can’t cut off this hope for people.”
      As of this month, angioplasty for MS patients with CCSVI remains illegal in Canada. Those whose condition has been verified by venal scan at BVI or other similar imaging clinic across the country have only two options. They can wait (indefinitely) for Canada to approve “The Liberation Treatment,” or they can go abroad for treatment.
      Those with deep pockets are choosing the latter option, in droves.

      Venal angioplasty for MS patients with CCSVI is available in various countries around the world, including India, Costa Rica, Israel, Mexico, Bulgaria and Poland. Zamboni is presently not doing surgery in Italy, but focusing on research instead.
      Costs before travel and accommodation can run upwards of $10,000.
      One MS patient who recently elected to travel outside Canada for treatment was Andrea White of Kitchener. White and eight other Ontarians flew to New Delhi, India for the venous angioplasty surgery at a private Indian hospital.
      In an interview with the Waterloo Region Record in June, White said that almost immediately after the one-hour operation, she had regained feeling and warmth in her affected leg. Her mobility also improved greatly. White no longer needs pain medication.

      April’s Hope

      April Morrissey feels a mixture of happiness and frustration in reading such stories as White’s. “Anyone who has MS knows what we all go through on a daily basis with it, so I’m happy when I hear that someone is much better. But not all of us are in a financial position to cover the costs of a trip to India or Poland.”
      April is on the waiting list for venal imaging and possible angioplasty in Albany, New York, one of a handful of American clinics and hospitals performing the procedure. There is a wait list. April has received confirmation that she will be booked for the procedure during the first quarter of 2011.
      “That’s not so long,” she says optimistically, “but it’s so frustrating and wrong that people like me need to go outside Canada for treatment that has been proven effective elsewhere.” 
      April speaks for 60,000 Canadians afflicted by MS when she asks that pressure be put on the Canadian governments, both federal and provincial to step up their approval of “The Liberation Treatment.” 
      “For me, my MS is still not severe, but for others it’s urgent.”
    • *

      la SCSP investit 2,4 millions$ pour la IVCC... Ce n'est pas négligeable...

      par Suzie Desrochers, mercredi 18 août 2010, à 23:39

      Plus de 2,4 millions de dollars seront alloués à sept subventions de fonctionnement devant servir à explorer la relation IVCC-sclérose en plaques L’examen rapide des propositions de recherche permettra d’amorcer dès le 1er juillet le versement des subventions de recherche sur l’IVCC Toronto, Ontario, le 11 juin 2010. Plus de 2,4 millions de dollars ont été accordés par la Société canadienne de la sclérose en plaques et la National Multiple Sclerosis Society (organisme états-unien de la SP) à sept nouvelles études sur le lien allégué entre l’insuffisance veineuse céphalorachidienne chronique (IVCC) et la SP. Toutes les demandes de subvention ont été soumises à l’évaluation rigoureuse d’un comité d’examen international composé d’experts dans divers domaines : radiologie interventionnelle, chirurgie vasculaire et neurologie. La Société canadienne de la SP et la National MS Society ont collaboré à la composition de ce comité chargé de juger de la valeur scientifique et de la faisabilité des projets soumis ainsi que de l’expérience des équipes candidates."

    • * 

      Vascular Surgeons in Ocala (FL)

    • *

      Ça pourrait bouger au Québec !

    • *


 

 

Commenter cet article