Letter to Newspapers exposing MS patients denied treatment.

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Letter to Newspapers exposing MS patients denied treatment.

Postby snowbound » Tue May 04, 2010 7:47 am

I am writing to you in the hope that I can interest you in investigating and reporting on why a new treatment discovered last year by Dr Zamboni for Multiple Sclerosis which is proving to have dramatic results for people who are being treated around the world is being denied to patients here in the UK on the NHS.

The purpose of this letter is not to enter into debate with regards to the efficacy of the treatment as that has already been established and there is now further evidence to prove its benefits to patients with MS. I have presented the evidence later on in this letter and am asking you to report on how the MS Societies around the world especially in the UK are trying to cover up this evidence on what is a simple low risk, low cost procedure and the benefits it truly offers patients with MS.

The newly introduced discovery of CCSVI (Chronic Cerebrospinal Venous Insufficiency) is easily diagnosed and can be treated by a procedure called balloon angioplasty, which is relatively quick (an estimated hour), and relatively simple. This is not a procedure that is new to Vascular Surgeons as it is already being performed for a myriad of reasons; it's just new as a possible treatment for MS. The patient is given a local anesthetic in their groin, and is able to leave the hospital in approximately 3 hours after walking in, finished with virtually no risk at all. The only tape that is used is surgical, but unfortunately, the colour of tape we are seeing mostly, is red!

Just do the maths 1 x CCSVI scanning and angioplasty procedure maximum cost £1,500 once V’s 1 x Disease Modifying Drug cost £10,000-£20,000 + per year, every year!

http://www2.macleans.ca/2010/04/19/the- ... 2%80%99/3/

I do not believe in conspiracies just in providing facts. The following link is research from Canada who have been facing similar difficulties in accessing treatment for CCSVI from their Government as we have here in the UK.

http://healthblog.ctv.ca/post/Why-gover ... ation.aspx

After news broke about CCSVI late last year, The Multiple Sclerosis Society quickly released the following statement which is still posted on their internet site:-
"We are not convinced by the evidence that blockages to draining veins from the brain are specific to people with multiple sclerosis, or that this explains the cause of multiple sclerosis at any stage of the condition. We are all agreed that people with multiple sclerosis are not likely to benefit by treatments that dilate blood vessels and consider these procedures to carry risks with no evidence for benefit. The treatment for CCSVI is not available for patients with multiple sclerosis in the United Kingdom because there is no convincing evidence to suggest that it is safe or beneficial to people with MS."

http://www.mssociety.org.uk/research/az ... ccsvi.html

A petition was raised calling for the CCSVI treatment procedure to be made available in the United Kingdom and the petition with over 10,000 signatures on it from people around the UK was handed into 10 Downing Street. The response from the Government was word for word exactly the same as the statement which had been released by the MS Society which made it clear to us that the Government has not conducted any independent research because at that time there was much new evidence about CCSVI proving that this information was given by the MS Society to the Government because it is both outdated and wrong.
A new research paper has shown from a study of nearly 9,000 patients with MS that vascular co morbidity is associated with more rapid disability progression in multiple sclerosis.

http://www.ncbi.nlm.nih.gov/pubmed/20350978

There are also several hundred people who have been treated privately by Vascular Surgeons in clinics overseas. Below is one example of a patient treated for CCSVI who is actually a consultant Cardiac Surgeon himself in Northern Ireland called Gianfranco Campalini. He was treated with angioplasty by Dr Zamboni and his MS symptoms improved. He has commented as follows on the subject of CCSVI.

“I believe that when a new treatment has practically only minor possible complications (as reported by Zamboni with venogram and angioplasty) and a good potential for benefits, as opposed to the pharmacological treatment rich in harmful side-effects, the need for rigorous scientific double-blind trials is nonsense. We need a few more intelligent and courageous vascular surgeons and radiologists to start treating vascular anomalies (strictures of the jugular veins) on their own merit, not mentioning MS. But the medical establishment is notorious for being conservative and generally lazy”

http://for-greet.squarespace.com/journa ... hical.html

All patients have reported improvement with their symptoms after treatment. For those that have had the "Liberation Treatment", fatigue is the most commonly reported improvement in all of the patients. Fatigue is so debilitating for almost all MS patients, as it makes normal everyday activities almost impossible. Other improvements experienced, are balance, coordination, speech, eyesight, and the list goes on. People are forced out of the workforce, at such a young age, that instead of being contributors to society, they are left with no choice to be a drain on it, instead. This is definitely not their choice. Careers are cut in half, where family & friends, turn into caregivers for these unfortunate souls. Families are torn apart, because of such a great burden.
More recently, within the last month, Kuwait announced that they were about to start diagnosing and treating CCSVI in all of their 600 patients with MS.

http://www.ccsvikuwait.com/Details.aspx?d=5

As I am sitting at home writing this letter, early preliminary results from Kuwait have just been published on the internet for the first 62 patients who have now been treated for CCSVI.
The treatment results - All successful Angioplasty with satisfactory post balloon dilatation, No complications. All patients reported improvements (1 month), Improvement or disappearance of Numbness, Loss of fatigue and increased energy. Improvement of power (Foot drop). Improvement visual acuity, (No blurred vision), reduced electrical sensation. Memory improvement.

http://www.thisisms.com/ftopict-11334.html

This is fantastic news, just look at the comments on the above links from people who are following this it couldn’t have come at a better time because I can now hand you this story on a plate  and hopefully with your involvement there is no way now that either the MS Society or the Government (new or old) can maintain its position that they are all agreed that people with multiple sclerosis are not likely to benefit by treatments that dilate blood vessels and consider these procedures to carry risks with no evidence for benefit.
These Preliminary Results from treatment of CCSVI in Kuwait confirm there is strong link between CCSVI and M.S.

http://www.ccsvikuwait.com/

Please expose this story because for some reason the MS Society who is just a private charity and is not in the public health domain seem to be calling the shots with the Government and do not appear to be working in our best interests, it’s nothing short of scandalous. The response from the Government to the petition can be viewed here

www.facebook.com/notes/ms-ccsvi-uk/repl ... 2650825713

If you would like to discuss any of the above with me in further detail I would be delighted to hear from you.
Kind Regards
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Postby sbr487 » Tue May 04, 2010 7:57 am

Jordan study came out recently and indicates towards ccsvi
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Jordan study

Postby snowbound » Tue May 04, 2010 8:00 am

sbr487 wrote:Jordan study came out recently and indicates towards ccsvi


Do you have a link to this?
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Postby sbr487 » Tue May 04, 2010 8:04 am

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Postby jackiejay » Tue May 04, 2010 10:03 am

Excellent letter....has all the facts and sources....with a few words such as country, etc. changed it could be sent to Canadian and U.S. newspapers also.....even a fact sheet to give to doubting doctors to read.
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Postby beerduff » Tue May 04, 2010 10:37 pm

jackiejay wrote:Excellent letter....has all the facts and sources....with a few words such as country, etc. changed it could be sent to Canadian and U.S. newspapers also.....even a fact sheet to give to doubting doctors to read.

This is an excellent letter. Hits straight to the point.
Thanks snowbound, if it ok with you i would like to send this letter out to the media and medical community in my area.
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