It has been one tumultuous journey to say the least over the last two years. This coming weekend marks two years since Professor Zamboni’s ‘Big Idea’ was released and people with MS started to hear about research where a correlation was found between impaired venous drainage of the central nervous systems and Multiple Sclerosis. When I first became involved I could never have predicted all the turns and twists that have played out in this story. Positions have been taken, alliances formed, people with MS taking up the cause in the thousands across the world and in my own city. Demonstrations, conferences, forums, research papers, web-cast expert opinions, quiet conversations in cafes, meetings with members of parliament and television interviews. To the observer it must be an interesting study in human behaviour and the rising up of people for a cause that threatens to change the status quo of how MS organisations and research operate. To see the people essentially considered at the bottom of the food chain ask some hard questions, expect to see a measured response void of rhetoric and deflection and persisting without losing their resolve.
I have to say most of the rewarding aspects of my involvement with CCSVI Australia is speaking with people who have had the opportunity to be treated and hear them share of their lives changed. It’s been a privilege to have listened as people speak of functions restored, return to work, improved family dynamics and above all a hope that the future may be somewhat brighter than long believed. Of course not everyone has this experience which is what we need to understand more about but I am not about to discuss that here. Conversely it has been painful to hear stories of people who are unwell fighting very hard to get testing, often having to travel interstate, having to find large sums of money that they don’t have to pay privately for a procedure that is now considered ‘elective surgery’ for people with MS and then the frustration of those who are still waiting for approval of a trial that is really their only option of treatment. The struggle is not because an angioplasty is inherently dangerous, thousands such procedures are performed every year.
It’s not because there aren’t enough Interventional Radiologists who would like to offer the treatment or even because it is too costly. It is simply because of hospital politics (and I will leave you to decide who and why) and a fear that treating people will open a Pandora’s Box that, once the contents are sprawled everywhere, cannot be controlled.
My intention here is to give a snapshot at this point in time of how I see things in various arenas.
MS Australia
A few weeks ago I was contacted by Robyn Hunter and invited to meet with Alan Blackwood, MS Advocate for MS Australia. To be honest my thoughts were ‘here we go again!” I’ve sincerely lost count of the number of times I have met with a different member of the complex MS Australia structure and gone over the same ground with absolutely no movement forward. To date I have met or spoken with, Jeremy Wright, Simon McKeon, Bill Younger (ex-CEO of MSA), Elizabeth McDonald, Ken Sharpe, Robyn Hunter, Andrew Long, the entire MS Advisory Council and now Alan Blackwood. Sometimes I’ve left feeling hopeful and sometimes I’ve left feeling totally at a loss as to what the point of the whole organisation is if they cannot truly represent people in this area. Needless to say Elvis’s ‘Little Less Conversation’ is a regular in my mental music player as to date there has been very little action.
It was the MS Australia board meeting in September that prompted the first meeting with Alan Blackwood. Now to be clear, MS Australia is the national umbrella organisation that oversees the five state societies and MS Research Australia. All of the state societies have at least one member on the MS Australia board. Clear? I think I have only just figured this out! As I was saying, in September the board agreed that CCSVI was an issue that they had to give attention to. As a result it was believed appropriate that
approaching CCSVI Australia in an effort to understanding the issues around CCSVI was the next course of action. A few weeks ago Helen and I met with Robyn Hunter, Alan Blackwood and Prue Guillaume. We all spoke of the mutual dissatisfaction in the current situation where most of the battle was being played out on Facebook and many misconceptions and assumptions have been made by all parties concerned. Helen and I shared about the basic premise of CCSVI Australia, that we are a group of pwMS who want to see accurate information about CCSVI available and the freedom for pwMS to be tested and treated. Additionally we want to see research in Australia so we can better understand the impact of CCSVI in Multiple Sclerosis.
The outcomes of this meeting was that Prue would assemble a Q&A document in consultation with members of CCSVI Australia to ensure a streamlined approach to advice and information dispensed from all 5 state societies. We also agreed to continue regular dialogue with Alan Blackwood regarding advocacy and raising the profile of CCSVI on a political level to complement the work we had already done in this area. We have since met twice and have discussed various issues, constraints, potential avenues of advocacy, parliamentary briefings, springboarding the current standing of MS Australia in these areas. I am honest when I say I feel more hopeful than I have in a long time that they are willing to partner with us. But again…. is that Elvis I hear?? Still waiting to receive a draft of the Q&As for us to review but overall I feel like these are some positive steps.
Research
I was highly amused by the release of the delightfully poetic statement on CCSVI from ECTRIMS; “From the Big Idea to the Perfect Crime?” www.ectrims.eu/pdf/ECTRIMS_CCSVI_MS_ECTRIMS_EFNS_ENS.pdf It was not unexpected, in fact we had a little preview from the MS Research Australia website two weeks previous with the publishing of their ‘September CCSVI Round Up’ which we are led to believe was based on information provided by the MS International Federation. In our humble opinion, recent publications have been a biased representation of the current research on CCSVI and this latest ‘round up’ was met with a flurry of words on the MSRA Facebook page as many people took to their keyboards in an attitude of ‘enough is enough!’ It seemed that the boiling pot, which in Australia had been on a low simmer whilst the rest of the MS world steamed profusely, was about to blow it’s lid and the results were somewhat messy. ‘She’ll be right mate’ had now been superseded by “you listen and you listen good,” and a new sense of purpose had moved into town. I confess to feeling utterly sick over that weekend as people who I had never even heard of posted about their pain and anguish over observing what was going on in Australia in relation to CCSVI and their sense of powerlessness. (I should add in the days following the MSRA post there have been some variations made to the September CCSVI Round Up and some balancing research included).
So as I’d much rather collaborate than vent randomly, I met with Jeremy Wright and Alan Blackwood. I don’t think I am talking out of school when I say that the feeling of both Jeremy and Alan was that the ECTRIMS document was insensitive and not meant for general consumption. Which to me only highlights just how out of touch the authors of this paper and the MSIF in general are – do they not realise we are watching everything and we are not impressed, do they even care? The old scheme of things, where these conferences go on with very little interest from the patient community, has passed away. Needless to say their comment that “all societies are in full accordance with the MS International Federation statement” is not endorsed by either of these men - not that they are likely to be proactive in setting the record straight. Anyway it shall be interesting to see how discussions and publications regarding CCSVI at ECTRIMS will guide our Neurologists in the coming months.
My best understanding of MS Research Australia is that they believe they have put out a call for research into CCSVI and the response has been underwhelming. They have provided $35,000 funding for one trial through the Austin Hospital, the preliminary results have been made available for ECTRIMS http://registration.akm.ch/einsicht.php?XNABSTRACT_ID=136852&XNSPRACHE_ID=2&XNKONGRESS_ID=150&XNMASKEN_ID=900 It seems that in thirty three people with early stage MS or Clinically Isolated Syndrome they have been unable to find one case of CCSVI within the current guidelines. Again I guess we expected this and I raised my concerns with Jeremy Wright regarding the protocols and selection criteria September last year. They had been fairly open that their protocols were not as broad as Zamboni’s. My suspicion was that this trial would not progress research into the effect of vascular abnormalities for pwMS. Selecting a cohort of people with CIS/early MS would likely yield poor results simply because it is harder to detect early in the disease process. Why not test people further on who displayed more symptoms? Well it couldn’t be blinded of course! I think what has been overlooked is the constraints of a Doppler ultrasound trial for CCSVI. To be brief, the azygos vein cannot be tested and it is not as accurate as a Venogram which is considered the gold standard by Vascular Radiologists. Surely to be complete in such a trial all methods should be employed before making a statement “that CCSVI does not have a causal role in the pathogenesis for the onset of MS.” The picture is too incomplete to make such an assertion. To me it is like saying, you’re spinal tap did not show abnormal proteins so you don’t have MS, without offering an MRI. We know many people have a negative result to a spinal tap but do indeed have MS. This argument makes sense to me anyway.
I am assured by Jeremy that the outcome of this trial is very important, that it will help answer the question of whether CCSVI causes MS. Seriously it is such a benign question for most of us. We just want to know if we have it and if so will treatment help? Let’s get on to actually helping people.
Of course there are ways that things are done in research and it is a painstaking process well beyond my basic understanding. I do not doubt that a whole range of trials need to be done from every angle to fully understand the correlation between CCSVI and Multiple Sclerosis. I do appreciate the research in many areas of MS and that there are researchers who are sincerely looking for a cure. I am also very aware that there is big money to be made from research into specific treatments and medications so cannot ignore the possibilities of serious conflicts of interest happening in this industry. Conflicts of interest that affect where funding is directed, the speed at which research is approved and the outcomes that are held in highest regard by the Neurological community.
As far as MSRA goes, they will continue to consider funding future research submissions into CCSVI. They do not see it their role to instigate specific research but rely on researchers approaching them. I guess the message from this is that Vascular Specialists who wish to study CCSVI in MS should be made aware that they can consider seeking financial support from MSRA. There is also the option of seeking funding directly through the National Health and Medical Research Council (NHMRC). CCSVI Australia would encourage any Vascular Specialist or Sonographer with an interest in CCSVI to seek financial support from both of these sources.
Of course the big question we are waiting on is, has the Alfred Trial been approved? There is yet to be an official announcement and I for one am not willing to start counting chickens. However it seems that things are more positive than they have ever been that the trial will proceed. According to Jeremy Wright, the MSRA Research Board are waiting on answers to their questions before our funding would be released to the Alfred Hospital. Of course the funding referred to is the $88,000 that CCSVI Australia raised with the help of our family and friends so we are very keen to see that money used in an area that will see CCSVI research progress to provide real life benefits to people with CCSVI.
Media
Channel 7’s Sunday Night programme has completed a series of interviews with various experts and people with MS/CCSVI. It has not yet aired and the final program for the year is this coming Sunday. We do not expect it to run until next year. This is a shame as the wider community in Australia have not yet had opportunity to hear about CCSVI. I am at a loss to understand why not.
Government
Many MPs are now aware of CCSVI as an issue for pwMS. It is on the agenda with Nicola Roxon's health committee. We continue to update MPs regularly with news of latest developments and what we want them to do via the MS Network of Care www.msnetwork.org/advocacy/briefing.htm Firstly to encourage nation-wide trials and secondly to stop the discrimination against pwMS in accessing vascular care. An online petition requesting government action on CCSVI now numbers over 1400. If you have not signed yet, please do so at www.gopetition.com.au/petitions/support-ccsvi-research-in-australia.html
Final words
If you have read this far, well done and thank you! I would like to take this opportunity to also thank all the core members of CCSVI Australia who have worked tirelessly in raising awareness for CCSVI and MS in many different ways. It is a privilege to know each of you and it has been a thrill to see all of you with a strong sense of hope for the future. Not that the future is any more certain for anyone but it’s nice to think we may have a greater number of better days ahead.
www.youtube.com/watch?v=d0vXxH1IEmQ ;)