http://news.bbc.co.uk/1/hi/health/8374980.stm
We remain sceptical about this theory; venous outflow obstruction does not explain the epidemiology of MS and falls down short on many other observations.
The interventions required to relieve venous obstruction are not without risks. The ‘blood blockage theory’ remains a theory and any involvement with the theory should be via ethically approved research studies.
Firstly many thanks for holding the Research Day last month. It was very useful, interesting and enjoyable all at once. Thanks also for your blogging.Regarding CCSVI, I’m at a loss to know what would prompt the neurologists that I’ve spoken to, into being less dismissive of these potentially valuable observations. I saw mine last week and when I asked for his opinion on CCSVI, he said that he didn’t know what it was – this was the day after the wide coverage of the Buffalo press release. When prompted further, he called it ‘that vein thing’, and lumped it together with some Coca-Cola based remedy from the past. Honestly, we deserve better than this. I understand ideas have come and gone over the years, but recently the MS Societies also seem to think that this is a valid area of research.At the Research Day presentation, CCSVI was referred to as ‘a distraction’. It was also said, that if the German study that was mentioned, had found just 4 or 5 CCSVI cases of the 40 MS patients they looked at, it would be ‘something’. The initial un-blinding of the Buffalo study has found over 55% out of 280 people with MS had CCSVI. (I understand that this proportion breaks down further to CCSVI found in patients who have had numerous MS attacks: 80%, versus CCSVI in patients who have had only a single attack: 38%). If other studies report ‘positive’ results, how many will be enough to promote it from ‘distraction’ status? I’m not being sarcastic, that’s a sincere question!Dr. Marian Simka, working in Poland, also presented his observations last week at the Hamilton Canada CCSVI Workshop "250 MS patients’ examined, venous abnormalities found in ~95% of MS patients examined" – though not a clinical study, these results add to the data available.The Buffalo results are suitably complex, but doesn’t it look like CCSVI is at least part of the MS story? Maybe another factor in the likelihood of a person getting MS? Not to mention the symptom relief reported by (very sane looking) patients in the recent BBC reports, amongst others, who have had their veins widened with angioplasty.More research needed? Of course. I think it’s fair to say that the field of Neurology has yet to have all the answers, or I wouldn’t be tottering around like an 80 year old in a 40 year old body. I’d like very much to have involvement with the theory, via ethically approved research study. Who do I call?
At the moment I am not aware of any centres in the UK running clinical studies on CCSVI. However, you are correct in that both the MS charities are making funds available to research this. The latter is very important as the potential implications for people with MS is so great; the treatments being proposed for "CCSVI" have major health risks. In countries with a fee-for-service medical systems early adoption of new information like this is typically very rapid, particularly if it involves an intervention. I would urge people with MS not to have any investigations of procedures performed outside the environment of a clinical study. The latter should be via a protocol that has ethical approval, they should give informed consent and there should be no financial cost for participating in the research.
Also, as Dr Zamboni has said, it's not a cure. And from what I've seen online his wife is still on Disease Modifying Drugs, so it may have offered a slight upturn, but this is probably consistant with other drugs out there, or even placebo(?).
There has been much excitement about this story. By far the best summary I have found anywhere can be found on http://www.wheelchairkamikaze.com/2010/02/ccsvi-already-success.html#commentslook at Saturday, February 13, 2010 I often find the caution of some neurologists annoying but it is probably best to be cautious. On the blogOne comment says“If our doc's thought we were having a stroke they would take action to avoid permanent damage. Yet no action can be taken for an MS patient until studies can be done to see if angioplasty is safe?”But the reply is “To be fair, regarding your comments on "if we were having a stroke," angioplasty and/or stenting for critical carotid artery stenosis – which is what you are referring to – had to go through the same studies and trials.In the early days of stroke prevention, a large number of extremely unfortunate patients suffered from additional strokes far more severe than their original (usually minor) stroke, simply due to inexperience and poor technique. It took a *long* time before stents and angioplasty were safe medical procedures, and not just as likely to kill you as leaving things alone.As a disclaimer, I'm a vascular sonographer (in the stroke unit) at a public hospital.” There is obviously much work to be done. First proving a link and then working out how to do the surgery safely.
Just found out that turmeric, which I take half a teaspoon 3 times a day, and which helps my symptoms, is a blood thinning agent. Further evidence that there is a vascular background to multiple sclerosis?