Welcome! This blog contains research & information on lifestyle, nutrition and health for those with MS, as well as continuing information on the understanding of CCSVI and cerebral hypoperfusion. This blog is informative only--all medical decisions should be discussed with your own physicians.

The posts are searchable---simply type in your topic of interest in the search box at the top left.

Almost all of MS research is initiated and funded by pharmaceutical companies. This maintains the EAE mouse model and the immune paradigm of MS, and continues the 20 billion dollar a year MS treatment industry. But as we learn more about slowed blood flow, gray matter atrophy, and environmental links to MS progression and disability--all things the current drugs do not address--we're discovering more about how to help those with MS.

To learn how this journey began, read my first post from August, 2009. Be well! Joan

Monday, January 9, 2012


Perspective

January 9, 2012 at 11:27am

In reading postings on the internet, checking in on the CCSVI advocacy groups, and trying to assess what's going on, it's easy to be discouraged these days.

The science and investigation of venous malformations in MS is moving too slowly for many.  People with MS have to deal with their progressive disease and time limitations.  The language of many MS specialists and neurologists is inflammatory and negative towards this research.  There are misguided and badly researched stories in the media.  Or complete oblivion of the vascular research and cheerleading for the pharmaceutical industry in the media.  There are allegations made between groups of people who should be working to help others. There are medical and tourism organizations looking for ways to make money off CCSVI.  Calls of quackery, angry words, hateful speech, negativity.  Lots of drama going on.

and it's discouraging.

But underneath all of the commotion, there is actual progress being made in understanding multiple sclerosis.

I want to try and focus on the progress and the positive today, and give some perspective, for my own spirit, as well as for others.  Because MS is our common enemy.  It is why we're here.  Life has enough drama.

Here is the explanation of the importance of the upcoming International Society for Neurovascular Disease (ISNVD) convention from the program--

 The meeting as a whole will primarily focus on advancing understanding of the recently described condition called CCSVI and its relationship to multiple sclerosis, other neurologic disorders and aging. A great amount of fresh and original information will be presented on this condition. Included are 5 scientific sessions on CCSVI that will further discuss the role of imaging techniques, diagnostic guidelines and standard consensuses to be used for diagnosing CCSVI.

Of particular interest is the session reporting first postmortem study results that assessed jugular and azygos venous pathology. Dr. Fox from the Cleveland Clinic will present some of his recent findings. Basic scientific and hemodynamic contributions, lectures and abstracts on the CCSVI hypothesis are sure to generate a significant level of interest among the participants. In particular, the session about computational fluid dynamics and measuring flow is aimed at attracting most of the conference attendees.



For the first time, a more structured approach is planned to meet the continuous medical educational (CME) goals of the meeting. This approach will describe methodological considerations about performing clinical trials and measuring related treatment outcomes in neurological disorders, with particular emphasis on multiple sclerosis. It is to be noted that one of the primary goals of the Society is to encourage safe and ethical approaches in designing new clinical trials that will investigate this important part of the puzzle. Two scientific sessions are planned to report currently ongoing trials in CCSVI as well as those that have recently concluded.
The selected Abstracts have been incorporated into the Scientific sessions where they fit most appropriately. These represent the opportunity to feature the highest quality work. 


Look at the scientific program for the ISNVD---look at all of the respected and multi-disciplinary researchers from around the globe.  Read their lecture topics.  Know that this exploration is not going away.  It is not going to be buried any longer.  There is too much evidence now.  And there are too many people who have benefitted from treating the vascular aspect of their MS, and spoken out about it. 


A whole new area of medical exploration is happening in our lifetimes.  And that gives me enough reason to remain positive and involved in this discovery process.  I hope you feel the same.

Joan

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