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Large Population Studies reinforce vascular associations with MS Symptoms

The Multiple Sclerosis Network of Care Australia recently compared the outcomes of large population studies by Multiple Sclerosis Research Australia (MSRA) in 2012, the (then) Multiple Society of NSW in 2001 and the Multiple Sclerosis International Federation (MSIF) in 2012, with published research relating to the nb: long term outcomes (2011 to 2015) of successfully treating CCSVI conditions with Angioplasty/Venoplasty.

The population studies encompassed 15,184 people with MS who had not had this treatment. This group included 70% of people diagnosed with multiple sclerosis in NSW, 12% across Australia and 10,090 across the globe. The treatment group involved 2150 examinations across 366 CCSVI affected patients independently monitored over a 4 year time span.

This comparison showed that the symptoms relieved through the successful PTA treatment of CCSVI irregularities (across all MS sub types) nb: corresponded significantly with the top 20 symptoms identified by these highly regarded population studies.

This is significant. It also paves the way for potential comparisons as between the benefits of PTA interventions and the range of non CCSVI treatment options/medications currently recommended for each of these symptoms.

See http://www.msnetwork.org/results/ccsvibenefits.htm#Figure_1

Comparisons of this type are important in translating broader based CCSVI knowledge into the “here and now” world of those living with MS. They also complement more rigorous clinical trials on this topic.  In this regard an overview of the current state of play is at

http://www.msnetwork.org/results
























 Award for Excellence in Justice and Rights Protection against a challenging selection criteria. Relief from many common MS symptoms This Award is an important part of the Australian Government’s celebration of the International Day of People with Disability. Kerri’s advocated on behalf of Australian’s living with Multiple Sclerosis for better access to long established vascular interventions shown to provide significant and, at times, immediate, relief from many of the most common symptoms of MS. Consensus based Advocacy While subsequent media coverage well highlighted this important endeavor there has been some disturbing feedback that the consensus based research supporting Kerri’s advocacy is not always properly appreciated and/or communicated. This is disturbing. Protecting the Vulnerable To better understand why Kerri’s “here and now” advocacy and leadership is so important visit  A further remarkable example RM3418MS Maree Thomson has lived with MS for more than 15 years. In 2013 Maree was bestowed with the Sir Louis Pyke Award (the highest award available) in acknowledgement of her outstanding service to people with multiple sclerosis and the MS Australia organisation.  In 2016 Maree decided to be screened and if possible treated, for any identified blood flow irregularities. Here is Maree's story We are people living with a Multiple Sclerosis diagnosis. In recent times researchers have cautioned that there is a high incidence of (undetected) cardiovascular disorders in people diagnosed with this condition – left undetected they warn that such incomplete diagnoses not only causes patients potential harm but cost health care systems (including governments) untold millions of dollars a year - Australia is no exception..

Potential Harm to Patients RM3400MS Delayed or potentially incomplete diagnoses not only means that we may be getting expensive and potentially harmful treatments we don't need, but we are also not getting the appropriate treatment for the conditions we may have. Many in the Australian MS community are currently in this position. This situation is compounded because of extremely limited access to relevant and comprehensive independent cardiovascular assessment procedures..

 Informed Patient Centred Decision Making is impeded. Without such access many of us are not able, in conjunction with our medical advisors, to make informed decisions about possible treatment options.

While this situation has been highlighted in the Australian Parliament on several occasions over the past 5 years – it is yet to be translated into policies and programs that effectively address what has become a very unhealthy situation..For an update on ongoing developments

http://www.msnetwork.org/news.htm

Patient Centred Feedback is Vital Feedback (since 2011) from more than 3,000 Australian families, friends, carers and service providers has inspired the development of this Open Letter (more than 750 since April 2016).

How your Voice can be Better Heard Your thoughts and details of personal experiences are invaluable and greatly appreciated - here is where your story can be told

http://www.msnetwork.org/bookmarks/feedback.htm

Draft Policies are on the Table During March 2016 two of Australia’s widely recognised consumer focused Multiple Sclerosis organisations (the Multiple Sclerosis Network of Care Australia and CCSVI Australia) jointly wrote to the Leaders of all Australian Political Parties on our behalf seeking clarification of each Party’s policy position on this matter.

They specifically sought the bipartisan support of the Parliament ‘’to assist in accelerating the processes whereby what is being learnt regarding cardiovascular irregularities and MS is better translated into benefits for patients and reduced government outlays’’ Details of broadly based recommended policies and programs were also referenced,

http://www.msnetwork.org/caution.htm#slow

Acknowledgement by Australian Government On 29 June 2016 the substance of these representations was acknowledged by the Australian Coalition Government - while much more is needed this should be an important step in the right direction

http://www.msnetwork.org/caution-parliament.htm#progress

Kerri Cassidy wins important Australian Award In December 2016 Judges said ''We are thrilled to announce that CCSVI Australia CEO, Kerri Cassidy, is the winner of the 2016 Award for Excellence in Justice and Rights Protection - for her long-term commitment to promoting justice and rights protection for people with disability. This is a reflection of her work in raising awareness and calling for equitable access to treatment for Chronic Cerebrospinal Venous Insufficiency (CCSVI) for people with Multiple Sclerosis.

Kerri has demonstrated her determination and commitment to raising awareness about the need for justice and rights protection of people with Multiple Sclerosis (MS) through the equitable access to Chronic Cerebro Spinal Venous Insufficiency (CCSVI) treatment”

http://www.msnetwork.org/expectations/ccsvipatient.htm

Involving Your Elected Representatives Bipartisan commitment is also being sought from individual representatives. Ask your local elected member/s to register their support  by signing this petition.

Further Important Warning Bells A study of 140,020 people - 23,382 with MS and a matched control group of 116,638 - confirmed our concerns that the prevalence of other chronic conditions (including cardiovascular conditions) may be common in people newly diagnosed with multiple sclerosis (MS). While the scope of this study does not appear to include chronic cerebro spinal vascular insufficiency (CCSVI) it does ring important warning bells.

Separate research identifies up to 80% of the MS population as having CCSVI related comorbidities - adding even greater weight to our concerns about underlying cardiovascular disease

http://www.msnetwork.org/caution.htm#cardiovascular

Drawing a Line in the Sand Since the early 1990's neurologists have underpinned the management of Multiple Sclerosis on the belief that it is strongly associated with an overactive immune system. Treatment invariably involves''dampening down'' the immune system via a diverse range of immuno suppressant drugs. The global market for these drugs is approaching $20 billion p.a. - much of which is achieved through government subsidies.

The highly respected National MS Society (USA) drew an important line in the sand in relation to these drugs when it said ''there are FDA-approved therapies that can impact the underlying disease course in people with the more common forms of MS. However, none of these can stop progression or reverse the damage to restore function".

http://www.msnetwork.org/bloodflow/medications.htm

The over-riding Issues

The over-riding CCSVI issues are about Access and Protecting the Vulnerable.- see http://www.msnetwork.org/evidence/index.htm

Your Commitment is Important to Us We would greatly appreciate your bipartisan support in progressing what is a very ‘’unhealthy’’ situation.

Yours Sincerely Your Constituents

This Open Letter is facilitated by Peter Sullivan and Kerri Cassidy, on behalf of CCSVI Australia Reference Group PO Box 10, Blackburn, VIC, 3130 Email  election@msnetwork.org

  • TO: All Elected Australian Parliamentary Representatives, Parliament House, Canberra 2600                                                                                     April 2016

     

    Multiple Sclerosis and the 2016 Australian Elections   An Open Letter

     

    Dear Elected Representative

    Testimonials We are people living with Multiple Sclerosis. In recent times researchers have cautioned that there is a high incidence of (undetected) cardiovascular disorders in people diagnosed with this condition – left undetected they warn that such rm2218MS incomplete diagnoses not only cause patients potential harm but cost health care systems (including governments) untold millions of dollars a year. See

    Potential Harm to Patients Polytrak

    RM2226MS A delayed or potentially incomplete diagnoses not only means patients may be getting expensive and potentially harmful treatments they don't need, but they are also not getting the appropriate treatment for the conditions they may have. Many in the Australian MS community are currently in this position. This situation is compounded because of extremely limited access to relevant and comprehensive independent cardiovascular assessment procedures.

    Informed Patient Centred Decision Making is impeded

    Without such access many are not able,HoriZons in conjunction with their medical advisors, to make informed decisions about possible treatment options. While this situation has been highlighted in the Parliament on several occasions over the past 5 years – it is yet to be translated into policies and programs that effectively address what has become a very unhealthy situation.

    Draft Policies are on the Table

    During March 2016 two of Australia’s widely recognised consumer focused Multiple Sclerosis organisations (the Multiple Sclerosis Network of Care Australia and CCSVI Australia) jointly wrote to the Leaders of all Australian Political Parties seeking clarification of each Party’s policy position on this matter.

    They specifically sought the bipartisan support of the Parliament ‘’to assist in accelerating the processes whereby what is being learnt regarding cardiovascular irregularities and MS is better translated into benefits for patients and reduced government outlays’’  Details of broadly based recommended policies and programs were also referenced -  

     

    Further Important Warning Bells

    openletter Subsequent research (a study of 140,020 people 23,382 with MS and a matched control group of 116,638) confirmed concerns that the prevalence of other chronic conditions (including cardiovascular conditions) may be common in people newly diagnosed with multiple sclerosis (MS). While the scope of this study does not appear to include chronic cerebro spinal vascular insufficiency (CCSVI) it does ring further important warning bells. Separate research identifies up to 80% of the MS population as having CCSVI related comorbidities - adding even greater weight to concerns about underlying cardiovascular disease – see

    openletter2016 Your Commitment is Important to Us

    Given the forthcoming 2016 Australian Elections we would appreciate your commitment and support in quickly resolving this very ‘’unhealthy’’ situation.

    Yours Sincerely

    Your Constituents

    REFERENCES

    1, Commitment sought from Party Leaders 2. Better Protection Needed for those Diagnosed with MS 3. Time to Stand and be counted 4. Treatment Delayed is Treatment Lost 5. Ministerial Innovation Update  Peter Sullivan and Kerri Cassidy, on behalf of CCSVI Australia Reference Group E

    This petition will be delivered to:

    All Australian Parliamentary Representatives

        Health Minister, Susan Ley,     Leader, Australian Greens, Senator Richard Di Natalie     Deputy Leader, Australian Greens, Senator Larissa Waters     Leader, Australian Nationals, The Hon Barnaby Joyce MP     Deputy Leader, Australian National Party, Senator Fiona Nash     Leader, Australian Labor Party, The Hon Bill Shorten MP     Deputy Leader, Australian Labor Party, The Hon Tanya Plibersek     Leader, Australian Liberal Party. The Hon Malcolm Turnbull     Deputy Leader, Australian Liberal Party, The Hon Julie Bishop MP     Chair, Senate Health Committee  Senator Deborah O'Neill     Chair, House of Representatives Health Committee, Mr Steve Irons MP     Assistant Minister for Innovation,  Hon Wyatt Roy

    Advocates         CEO CCSVI Australia,  Kerri Cassidy     Convenor, Multiple Sclerosis Network of Care Australia, Peter Sullivan     Parliamentary Friends of people with MS,  Senator David Bushby     Age and Disability Human Rights Commissioner, Hon Susan Ryan AO