Ez a poszt a webicina.com pályázatára készült, bemutatom az internet és a betegek szerepét a CCSVI kutatás felkarolásában.
There is an interesting competition on www.webicina.com about how social media helped any of us to improve our health, how we became able to manage it better then the existing medical system does. It is also looking for the link how social media helped or speeded up the information flow in the professional medical field and helped them to get better in their specialty.
After reading this competition, it was clear in my mind, that the best story like this is the story of CCSVI (Chronic Cerebrospinal Venous Insufficiency linked to the disabilitating disease of Multiple Sclerosis) which has circled the globe in the past 2 years fuelled by patients, and greatly helped by social media. That is definitely the most important health care story in the history of social media because there are millions of people with MS affected by this online revolution.
an old monster...
Multiple sclerosis (MS) is an inflammatory disease in which the fatty myelin sheaths around the axons of the brain and spinal cord are damaged, leading to demyelination and scarring as well as a broad spectrum of signs and symptoms. Disease onset usually occurs in young adults, and it is more common in women. It has a prevalence that ranges between 2 and 150 per 100,000. MS was first described in 1868 by Jean-Martin Charcot.
Almost any neurological symptom can appear with the disease, and often progresses to physical and cognitive disability. MS takes several forms, with new symptoms occurring either in discrete attacks (relapsing forms) or slowly accumulating over time (progressive forms).
MS is though to be autoimmune in origin but this has never been proved. There is no known cure for multiple sclerosis.
...and a new illness
CCSVI stands for “Chronic Cerebrospinal Venous Insufficiency,” a condition where people have obstructed blood flow in the veins that drain the central nervous system (the brain and spinal cord). New research indicates that CCSVI is significantly correlated with multiple sclerosis.
As a result of these venous abnormalities, the blood flow rate through the central nervous system back toward the heart may become slowed, and blood may reflux back toward the brain and spine.
Dr. Zamboni’s basic hypothesis that vascular abnormalities are linked with MS is neither a new nor a radical theory. Rather, it is supported by multiple scientific observers dating back 170 years.
In the late 1990s, Dr. Zamboni’s wife was diagnosed with Multiple Sclerosis. To better understand the venous relationship with MS, Dr. Zamboni began using sophisticated imaging equipment (including MRI and Ultrasound) to study the physiologic parameters linked to cerebral blood return.
By enhancing diagnostic accuracy with high resolution Doppler-based ultrasound and color-coded data displays, Dr. Zamboni was able to view the actual blood flow inside the main cerebral outflow routes from the head and neck. There, he discovered that, in some cases, blood was actually flowing backwards, or refluxing, into the central nervous system of some of his patients.
Some pioneers, including Joan Beal and Marie Rhodes started to spread the word about Zamboni's discovery among patients. The first publicly available forum was ThisisMS.com - which is a forum for MS patients – where Zamboni’s reasearch got attention by hundreds of patients. Soon the CCSVI topic became the most active topic at this patient forum. This was in 2009 when I also heard about Zamboni's theory. Within weeks, many many other MS related forums around the world started to discuss, and spead the word about this theory. Patients started to contact vascular doctors in their region, within their own country. Patients tried to pull professionals; like neurologist, neuro-radiologists, vascular surgeons, interventional radiologists into the CCSVI discussion.
In November 2009 was the first news broadcasted up in the air about CCSVI, covered by CTV news on the Canadian national TV. The news became official, and speeded up the spread of the word tremendously. The following months hundreds of discussion pages appeared on Facebook and Twitter, countless private blogs, youtube videos became available from patients who has been already treated. In Canada CTV was covering the development of the story for a very long time. Avis Favro has interviewed several patients underwent this so called „controversial” treatment with success, and asked the opinion of pro and contra professionals as well. After pioneering Canada, the media started to broadcast news about CCSVI in the USA and in more and more countries around the world from Australia throughout Europe to Asia.
a patient organization
Patients soon formed CCSVI Alliance which promotes education and research about CCSVI and its relationship to Multiple Sclerosis by providing objective information to the MS community, supporting medical investigations of CCSVI, and fostering collaboration among patients, advocates, and professionals.
"CCSVI Alliance began with the efforts of individuals who are intimately familiar with both multiple sclerosis (MS) and CCSVI. We live it. Our levels of disability range from mild to severe; we are or have been on every pharmaceutical prescribed for MS; and we are active in dozens of organizations, websites, and blogs devoted to MS. Based on our personal experiences and the available scientific research, we became and we remain committed to the exploration of CCSVI."
CCSVI Alliance members are literally part of the investigation. Many of them have been intensively tested for CCSVI, including Magnetic Resonance Venograms (MRV), Doppler exams, Magnetic Resonance Imaging (MRI), Computed Tomography scans (CT), selective venograms, and Susceptibility Weighted Imaging (SWI). They have studied research and questioned medical experts. Some of them are awaiting further research before deciding on treatment. Others have “run out of wait” and have already undergone angioplasty or stent placement.
While a small group of patients and caregivers created this forward-thinking organization, CCSVI Alliance now includes scientific professionals from multiple disciplines as well as other interested individuals. CCSVI Alliance will continue to keep their website current with the latest research, emerging practices, and patient perspectives. In addition, they will attend conferences, speak with the medical and patient communities, help bring together patients and doctors, connect medical professionals with one another, and facilitate further research into CCSVI.
Marie Rhodes - a patient with MS and CCSVI who has been treated by angioplasty - wrote a book on CCSVI as the cause of MS.
research teams worldwide
In the United States, the first case of CCSVI treatment and the first formal treatment protocols were pioneered by Dr. Michael Dake of Stanford University who has been contacted by patients and their family (Jeff and Joan Beal). Dr. E. Mark Haacke of Wayne State University, McMaster University, the Brain Body Institute, and the MRI Institute for Biomedical Research, is at the forefront of developing CCSVI imaging protocols, and, particularly iron quantification. Dr. Robert Zivadinov of the Buffalo Neuroimaging Analysis Center at the University of Buffalo is leading clinical trials testing the relationship between CCSVI and MS, and the efficacy of CCSVI treatment. Dr. Salvatore Sclafani of Kings County Hospital Center and SUNY Downstate College of Medicine was one of the first U.S. physicians to reach out directly to the MS community through ThisisMS.com, making CCSVI information and treatment more widely available for patients.
Since these physicians began their CCSVI work, many others have followed:
a new academic society
The International Society for NeuroVascular Disease (ISNVD) is a non-profit professional association devoted to furthering the development of research for neurovascular related diseases - including CCSVI. The society will hold annual scientific meetings and sponsor educational and scientific workshops. Target medical groups include, but are not limited to, Vascular Surgeons, Interventional Radiologists, Neurologists, Neurosurgeons, Physicists, and Technologists.
Here is the International Society of Neurovascular Disease Program for the Feb. 2012 meeting. Forty four invited speakers, research from around the world. Topics include: perfusion, hypoxia, endothelial dysfunction, abnormal venous and CSF flow in MS...many of the presenters were contacted by patients and caregivers and brought into the CCSVI discussion. If this is what patient/caregiver involvement can bring about in the world of medicine, we are doing the right thing. We keep contacting doctors, send them the research, spread the word.
the hungarian CCSVI group
Myself, and countless patients in Hungary live with different forms of MS and most likely having untreated CCSVI. We fight for the CCSVI theory by creating our hungarian CCSVI blog (this one). We set up a Facebook group to inform further the hungarian community, we have the ccsvi.hu domain, and we organise meetings and information sessions to patients and professionals as well. We had the First Hungarian CCSVI Day, and got the attention of the hungarian mass media and several doctors, but we also have doctors who are not interested in this research ...the same way as it goes in many other countries.
Without the power of modern social media and the desperation of MS patients nobody would know anything about CCSVI except Zamboni et al.
"First they ignore you, then they laugh at you, then they fight you, then you win."
... and many References
Zamboni P, Galeotti R, Menegatti E, et al. Chronic cerebrospinal venous insufficiency in patients with multiple sclerosis. Journal of Neurology, Neurosurgery, and Psychiatry. 2009; 80: 392-399
Al-Omari MH, Rousan, LA. Internal jugular vein morphology and hemodynamics in patients with multiple sclerosis. International Angiology. April, 2010; 29(2):115-120
Simka M, Kestecki J, Zaniewski M, Majewski E, Hartel M. Extracranial Doppler sonographic criteria of chronic cerebrospinal venous insufficiency in the patients with multiple sclerosis. International Angiology. April, 2010; 29(2): 109-114
Zivadinov, R. Preliminary Result
Bartolomei I, Salvi F, Galeotti R, Salviato E, Alcanterini M, Menegatti E, Mascalchi M, Zamboni P. Hemodynamic patterns of chronic cerebrospinal venous insufficiency in multiple sclerosis. Correlation with symptoms at onset and clinical course. International Angiology. 2010 Apr;29(2):183-8.
Lee BB, Bergan J, Gloviczki P, Laredo J, Loose DA, Mattassi R, Parsi K, Villavicencio JL, Zamboni P. Diagnosis and treatment of venous malformations Consensus Document of the International Union of Phlebology (IUP)-2009. International Angiology. 2009 Dec;28(6):434-51.)
Some text is from ccsvi.org, wikipedia, ISNVD, Facebook