IVCC/CCSVI: vidéos, radio, photos et échos de murs de ce mercredi.

Publié le par Handi@dy

ccsvi ms returnedVous aurez besoin de la barre google de traduction pour les échos de murs!

Martine qui est en Inde pour l'OP.
*Radio: Christophe Alkenbrack et Francine Deshaies aplatissent le président de leur société SEP!!! Un plaisir!
ccsvi-test.jpg*Echos de murs:
 Jenna Machala  By Mary Berukoff
STOP THE MS BULLYING…START THE MS COMPROMISE
and HEALTHCARE EQUALITY FOR ALL CANADIANS!
I am not a doctor, politician, research scientist, or fundraiser...but my profession as a teacher always believes that knowledge and compromise must always prevail over bias, denials, fears, entrenchment and dominati...on. This is why the general concepts of conflict, bullying, and fair, equitable compromise must be realized as they relate to the unfortunate plight of Multiple Sclerosis citizens. There are as many as 75,000 MS patients who hope for this resolution and my twin brothers are two of them. My brothers have been diagnosed with both MS and, as well, have shown diminished blood flow because of restricted jugular veins. Both feel victimized because they can not request a proven, safe treatment to open their veins, available to every other Canadian with similar conditions, but not MS patients. It’s like as if they have a red dot on their forehead and are to be treated as outcasts.

Can you believe it? In a country that prides itself on fair and democratic Health Care, there seem to be bullies and victims and every effort must be made to resolve this difficult matter and discrimination through compromise and respect for personal equality and freedom. To do anything less is to herald more tax payers anger, theories of over paid drug conspiracies, class action legal suits and human right violations.

In general, a conflict scenario starts when two parties have reasons to believe they are both right. Bullying starts when one group tries to impose their beliefs on the opposing group because of position, money, or strength...and if innocent people along the way get discriminated against, hurt or suffer, so be it. Or even worse, assume that the bully’s bureaucratic heavy hands are sincerely protecting your best interests which you aren’t capable of making for yourself.

It seems the major MS conflict is between two groups with two theories. Is it primarily a neurological or is it a vascular (circulatory) condition? On one hand, there are the neurologists, who study neurons; and on the other hand, the vascular surgeons or interventional radiologists (IR), who specialize in CCSVI (Chronic Cerebrospinal Venous Insufficiency).

Here are some reasons the neurologists believe they are right…Is MS still a neurological disease?
• 60 years of medical training that MS is an auto immune disorder with inflammation affecting the brain and spinal cord (central nervous system). Abnormal production of antibodies attacks the patient’s own organs including the myelin lining of nerve cell fibers.
• possible causes may include unknown environmental factors, genetic, viral.
• best way to treat MS symptoms is with immunmodulatory drugs, steroids or chemotherapy for fatigue, depression, anxiety, pain, urinary, spasticity and vertigo
• high costs of drugs and serious side effects justified as the only medications available to slow down the course of the disease or for palliative care
• new paradigm points to a non-invasive, non-expensive treatment (CCSVI) but this will not be available in Canada until it is part of a research protocol duly recognized by various ethics committees.
• neurologists will not refer patients to other specialists and force them to wait years for long term studies as this degenerative disease continues to do irreparable damage.

Here are some reasons that vascular surgeons or interventional radiologists believe they are right...Is MS a vascular condition because of improper blood flow?

• recent evidence shows that 80% to 97% of MS patients also suffer from blood flow problems (CCSVI )
• possible cause of MS is venous malformations which may be congenital. Inflammation and MS cannot cause venous blood flow problem.
• diagnostic testing (sonogram, MRI, angiogram) and treatment (balloon angioplasty) are highly safe and effective techniques. They have been proven to restore normal blood circulation in a host of conditions.
• venous angioplasty means an insertion into the veins of a catheter with the objective of removing venous obstruction by expanding a balloon at the site of restriction.
• treatment results vary from dramatic improvement to general well-being. To date nearly 1000 MS patients have been treated.
• vascular doctors are being shut down for treating these known venous malformations which have rare complication or side effects.

Even the MS Society of Canada feels they are doing right things…

• advocates for MS rights to change government policies, private industry practices and public attitudes in ways that will benefit people affected by MS
• drug programs and rehabilitative aids, supported by neurologists, maintain the view that CCSVI “needs more robust evidence…hasn't yet been proven to be involved with MS…” Mr. Savoie (CEO and fundraiser...note he has no medical background to allow him to make any judgment calls on medical procedures).
• recent election of new board members precluded any CCSVI nominees who were in the majority. Linda Lumsden, director, was joyful about raising more money by buying a hamburger at AW this summer. Is this the reason why directors get paid huge, undisclosed salaries to partner with AW (unhealthy fatty diet) but not confer with CCSVI specialists.(1)
• proud fact that 10 million dollars has been requested to investigate CCSVI. But their research grants are falsely misleading as you can see under bullying. For example, their first approved grants would involve 430 people for studying scans only...no treatments allowed.

STOP THE MS BULLYING

1. Vascular surgeons must not be prohibited from doing an angioplasty on any MS patient by hospitals and Health Review Boards. These boards must readjust the claim, “This “controversial” issue needs more clinical experimentation and review to justify a 40-year old angioplasty technique to improve blood flow.” Are we to believe that our most vital and, in many ways, most delicate organ, the brain, stands alone in being impervious to impaired venous drainage? Hard to imagine." Dr. Lorne Brandes

2. Recent research grants were granted by MS Societies to neurological teams to duplicate established facts by respected scientists about CCSVI. The label CCSVI indicates the general purpose of ONLY imaging and comparing veins for TWO YEARS with NO treatment options. Note that NO GRANTS were awarded to vascular specialists with experience to further study treatments for malformed or restricted veins. For example, the research team from McMaster University and St. Joseph's Hospital in Hamilton, which had applied for funding, and are preparing for a study, were not given any funding from the MS Society. (2)


3. Health Canada has referred this issue to Canadian Institutes of Health Research. The peer reviews data base shows that TOTAL GRANTS in the last 10 years amounted to $79,375,232 for the topic of Multiple Sclerosis. Not one match was found that linked the words sclerosis and stenosis or narrowing of the veins.

4. A recent provisional Health Minister reported to the media “that there are risks with experimental procedures…and it is not all appropriate to move forward with a procedure before it’s gone through appropriate reviews.” Kevin Falcon (BC Minister of Health) Province June 8). What does he offer as appropriate reviews...turn it over to the Michael Smith Foundation for co-ordination with not one neurologist or vascular specialist on the Board of Directors.

5. Serious concerns must be addressed by any neurologist who offers the newest oral drug being pushed by FDA which works by preventing the release of white blood cells; thereby, leaving the whole body vulnerable to infection and cancer.
Two studies published in the New England Journal of Medicine in February point out that some serious side effects have been linked to this new MS drug. (3)


START THE MS COMPROMISE and HEALTHCARE EQUALITY

As with any conflict, entrenched paradigms can take years to redefine and change. The term “cognitive dissonance” explains why adaptation to new ideas or theories are so difficult because “status quo” systems have to be re-evaluated, particularly with the medical establishment…Sickness, after all, is very lucrative.

Unfortunately, the neurologists and MS Societies who are deeply entrenched with neurological disorders and their pharmacological treatment rich in harmful side-effects cannot be expected to change without tough resistance. MS patients are “hung out to dry in the prevailing pharmaceutical competitions” and pay the ultimate price in indignity and agonizing disability.

The only solution is through compromise and co-operation. This will ensure fair balance, independence, objectivity and scientific research for all doctors as well as safe, quality care for all patients.

Here are seven starting points.

1. Neurologists must stop thinking that their 60 year old auto immune theories and drug solutions are the only answer. It is their choice to stay entrenched, but, in the meantime, if they feel, that brain and drug research is the ultimate solution, then they can proceed till the cash cows come home, but DO NOT drag individual MS patients who see and demand an alternative...

2. Vascular specialists and interventional radiologists qualified to deal with CCSVI must be allowed to do their jobs. Remove the blatant double standard in the Canadian medical system, where someone without MS can get their blood flow fixed, and those with MS, cannot get the very same blood flow problem corrected.

3. CCSVI research, testing and treatment must be inclusive. Proper funding must be provided to study the relationship between CCSVI and MS where CCSVI is identified and treated first. Proper research protocols have already been set in place by world renowned scientists for long term follow-up study of “liberated” patients.

4. The cost of diagnosis and treatment and the reduction in social assistance, ODSP and reduced hospital visits, home healthcare costs and all the other government funded MS services can be substantially reduced compared to drug and rehabilitation interventions (average yearly drug costs for MS is $30,000 plus supplementary aids).
.
5. Non-medical people in government and the MS Society must stop referring to a promising, safe and effective angioplasty treatment to improve blood flow with such favorite buzzwords as “new, controversial, experimental, unproven risk.” They can not make judgment calls or give second opinions on any medical treatment recommended by doctors. Totally unethical.

6. MS Citizens must own their individual rights to second opinions and freedom of choice for health care. When neurologists turn them down for lack of clinical evidence and offer a new drug for symptom management, they must have the right to be referred to a vascular specialist for consultation.

7. CCSVI awareness and advocacy is not going away and will continue to mobilize research and treatment across national boundaries and languages. Vascular doctors and interventional radiologists will continue to find bilateral jugular stenosis or venous reflux. People who have had the treatment will continue to report a return of energy, balance, walking, and thinking more clearly. Why? Because there is nothing else that even comes close to a new reality. Nobody can change the reality of hope and independence…unless you have tried to walk a few steps in MS shoes.

STOP THE MS BULLYING…START THE MS COMPROMISE

What can you do...share this email with everyone you know, media, health advocates, politicians, and theMS Society

Sincerely,
Mary Berukoff
gethelp@telus.net


(1) http://www2.macleans.ca/2010/06/14/ms-society-of-canada-a-house-divided-ceo-says/print/

(2)http://www.ctv.ca/CTVNews/TopStories/20100611/ms-society-ccsvi-research-grants-100611/
(2)http://mssociety.ca/en/releases/nr_20100611.htm

(3) http://pagingdrgupta.blogs.cnn.com/2010/06/11/fda-panel-urges-ok-of-first-oral-ms-drug/?hpt=Sbin

 *Michelle Walsh  Very thankful everyday since July 15th that the Doctors in Bulgaria saved my life and restored proper blood flow in my body so I can now see my two young children grow up. WAKE UP Canada and the rest of the world MS patients are dying and need this simple procedure done now!!

 *Ginger MacQueen  http://angioplastyforall.com/ PLEASE contribute to this cause!!! WE are fighting for the rights of every Canadian MS'er to be allowed to have angioplasty.

 *Maria Meszaros Dekleer  I saw my gp today for 8 days post follow up He was amazed! Normally my husband drives me and takes me in the wheelchair, today my daughter dropped me off and I WALKED in using my walker! oh and yesterday I bent and lifted my previously paralized left leg 12 times ! Thank you God :)

 *Ken Torbert  Dale Melnechuk feeling even better this morning. Day 36 and I have noticed the largest improvements coming in the past 3-4 days. Angioplasty for ccsvi is changing my life! I am standing taller while walking with the walker. Able to get up off the couch with less use of my hands. Everything is improving just a little mo...re. I can't wait to see what I'm like in September.

Ken Torbert Caroline McNeill My lovely hubby just reminded me of something....I used to cry b/c I couldn't be there for my kids. I was so tired I couldn't even play....but now I am there for my kids!! Thanks sweetie for reminding me of how different things are now...and how blessed we are!! I love you!! xoxox


 *Tessa Rushton  why is the guy from the MS society (who is on cbc calgary radio right now) talking about vascular treatment? Where are the vascular specialists?

 *Sonia Arsenault  Quel est LA PREUVE que l'angioplastie ne se donnait pas au Canada le 12 juillet?
C'est la demande que les assurances nous demande... j'ai le goût de leur dire; écoutez les nouvelles, christ!!!

* Kathleen Lynch  Still living inside a miracle. Still pretty doggone fun.


Commenter cet article