“CCSVI can be viewed as an infectious idea, or concept, or meme.”
“The following graphs and video from Google Trends shows how the CSSVI epidemic started and spread. I am not surprised to see that the epicentres of the epidemic are centred on Canada and Italy. It is clear that the epidemic is running its course and looks to be rapidly petering out.”
“What lessons can we learn from this epidemic? Many! Firstly, the medical community must take any future scare of this nature seriously and start a dialogue on the topic with MSers immediately. Secondly, we need to make sure that we expose bad science as quickly as possible. Thirdly, we need to quash any conspiracy theory as soon as possible; transparency and openness should be the order of the day. Fourthly, we need to engage with the public and have a continuous dialogue with them; they are too intelligent not to be treated in this way. Fifthly, we need to regain our credibility; no more patronising behaviour or condescending comments. Sixthly, admit we got this one wrong; MSers have died and suffered unnecessarily.”
“I suggest we all take a deep breadth and reflect on what has happened; it should never happen again.”
Google Trends: time-lapsed video of the epidemic
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Other relevant posts on this topic:
22 Jul 2012
Google trends: CCSVI a waning social phenomenon. “These latest Google trend figures are reassuring and continue downward. I sincerely hope the off-license use of procedures to treat CCSVI are waning as fast.” “CCSVI …
28 Aug 2012
In response to a comment yesterday about alemtuzumab being a social phenomenon I did some on-line research using Google Trends to compare alemtuzumab to CCSVI. Methods: I used the search terms alemtuzumab, …
15 Jan 2012
Google Trends: CCSVI still downwards. “As predicted CCSVI is a waning social phenomenon; remaining relatively country specific being limited mainly to Italy and Canada.” Source: Google Trends. Posted by Gavin …
10 Mar 2012
Given the social media aspect of CCSVI, he used Google Trends to determine the extent of this phenomenon and used the data collected as evidence that CCSVI AS A SOCIAL MEDIA PHENOMENON is on the decline.
21 Mar 2012
Please register here for the 4th MS Research Day: 10h00-15h00, Saturday 2nd February 2013, Central London! Wednesday, 21 March 2012. CCSVI continues to trend downwards. The latest Google data on CCSVI: Search volume index …
30 Nov 2011
CCSVI as monitored with Google Trends “The Google trend data on CCSVI continues to show a downward trend. The majority of hits are still from Canada, Italy and Serbia; a very interesting regional social phenomenon.” …
09 Nov 2011
Source: Google Trends “It is clear that after a peak in 2010 CCSVI is now waning as a social phenomenon.” “I am not surprised considering the deluge of negative data presented at ECTRIMS and the negative results that …
Hoh hoh hoh..!! MS scientist spending his time studying google about this 🙂 Quite funny actually, or pathetic perhaps 🙂
hes covering his back
You are obviously new to the blog. Google trends updates are a regular feature:http://multiple-sclerosis-research.blogspot.co.uk/2012/07/google-trends-ccsvi-waning-social.htmlhttp://multiple-sclerosis-research.blogspot.co.uk/2012/08/social-trends-alemtuzumab-vs-ccsvi.htmlhttp://multiple-sclerosis-research.blogspot.co.uk/2012/01/google-trends.htmlhttp://multiple-sclerosis-research.blogspot.co.uk/2012/03/losing-debate-on-social-media.htmlhttp://multiple-sclerosis-research.blogspot.co.uk/2012/03/ccsvi-continues-to-trend-downwards.htmlhttp://multiple-sclerosis-research.blogspot.co.uk/2011/11/ccsvi-trending-downwards.htmlhttp://multiple-sclerosis-research.blogspot.co.uk/2011/11/ccsvi-is-waning-as-social-phenomenon.html
Sorry, so you are doing this google-thing regularly? Hoh hoh.. even more funnier 🙂
Hoh hoh! You must be a joker. You should be ashamed of yourself. Fellow MSers have died from inappropriate treatment in relation to venous procedures targeting CCSVI. If the doctors doing these procedures are being sued – good they deserve to. All they are doing is profiteering from vulnerable MSers; they are no better than Big Pharma. Joker, What would you like to say to the loved ones of the MSers who have died? Hoh hoh! This is a serious issue and it deserves a serious response! RIP.
Fully agree with you G. but care to add one more point:CCSVi is a reality check of the mis-trust of the life-patenting industry. The latest about Campath pricing does not help. The CCSVI-like phenomenon will always be there (whatever a will intended clinician/researcher like you tries to squash it) as long as the pharma industry is profiteering from our disease.Rather than targeting CCSVI, let's swim up to the source and push for more (much more) regulation on pharma marketing spendings (i.e. bribes), R+D expenditures (more), senior management salaries and shareholding dividends (less) and drug pricing (much less in a captive market such as MS).Until then, conspiracy theory is conspiracy reality.
Tony, I couldn't agree with you more. Regulation is the only way this will happen. I am sure pharma is going to be investigated by politicians in the not too distant future and what has happened in the banking sector will happen in the pharma industry. I am a big proponent of free-market economy; it is a great driver of innovation. Regrettably, pharma is seems to be bucking the trend. Drug pricing and sales are not behaving like a true market and too much profiteering is happening with re-purposing of drugs and relaunching drugs using orphan-drug legislation to make a mint.
http://youtu.be/Jhj3u3LoooM
When you post links please say what they are as they tend to get deleted. This is a bit from Mike Adams the Health Ranger saying Doctors are more dangerous than Guns….A stupid statement if every there was one. According to some of our American posters Mike Adams is nuttier than a wingnut. Is there some reality in there- probably, otherwise the TV show would be taken down by Lawyers or maybe Pharma have a sense of humour. If you think Pharma do every right then read Bad Pharma
this site is full of juvenilles in oblivion Why doctors are more dangerous than guns – Health Ranger investigation you tube watch to realise whats really going on WAKE UP
ssshhh What's that I can hear, is it the 'Fat Lady' singing ???, No we're okay, it's just some Professor in his own little world thinking Google Trends have any bearing on future research, The line in the sand which you hoped would be drawn under CCSVI at Ectrims , as sadly failed to materialise and I can understand your need to grasp at anything to try and reinforce some closure.I am watching with new vigour and a whetted appetite as to where the research takes us, after all surely it can't do any worse than the last 30 / 40 years where progressive MS is concerned can it ?I prefer to use Google for more constructive reading, as in following the latest research being carried out by Raymond V. Damadian and David Chu .I can link it if you fancy some bedtime reading, after all it is MS related and I would conclude you would be open minded to this exciting news.?Regards as always.
If you really think that CCSVI is the cause of MS, that's entirely up to you. If you are happy belittling Prof G's efforts at throwing a little light on the subject, again that's entirely up to you. Remember he was under no obligation to set up this blog.You're right that there hasn't been much progress on progressive MS as yet but seeing as until fairly recently the dogma was that MS was demyelination with little regard to neurodegeneration, that isn't surprising. It is results (including our own studies)that have shown this to be probably the most important area to concentrate on. Sadly it takes time for the purely immunological cause of MS to die away.There is now a much bigger focus on addressing progressive MS and the first studies addressing neuroprotection are underway.
Thanks for posting this. It also vividly illustrates the desire of people to find something that will act as a therapy/cure.And take no notice of 'hoh ho' poster – he or she obviously doesn't understand the significance of the information illustrated in the film.
Or maybe I should've said 'Santa Claus poster'!
Andy, I'll be short an polite: Please shut the f*** up.Join Vasoulos and go post elsewhere. We don't want you here.
That's a bit harsh Tony. Andy is usually one of our more reasonable posters. We may not agree with much of what he says but we can agree to disagree. His post above does come across as a bit smug and snarky though.VV on the other hand really boils my p**s!
http://youtu.be/Jhj3u3LoooM
See comment above on this video
Apologies MD2,Lost my nerves. I have now decided to stop reading any CCSVI-linked post or comment.Do keep up with the good work. TF
No problem Tony. I understand completely the blood pressure-raising potential of the CCSVI threads, particularly some of the comments!I do wonder whether it's worth posting any more on this.Perhaps we need another poll?!Hope you keep enjoying the rest of the content.CheersMD2
Exactly how short are you Tony ?
Now now children, let's play nicely!
printed off all this as more proof The language is disgusting.CCSVI should of be allowed this site is now an utter disgrace . The headline news one day will disclose all.http://youtu.be/Jhj3u3LoooM. All the MS drugs are deadly
Take a deep breath and go and have a nice lie down.
Using google trend as an indicator for CCSVI popularity is nonsens. Absolutety nonsens. Have you ever tried making a similar graph for e.g. Tysabri? You will see the same pattern – an initial peek and then a flat gragh with a tendency to decline.
Oh dear, it looks as though you both (Prof G and Mousedoctor) are very naughty boys. The 'Venerable' Joan Beal commented on your activities at TIMS."http://www.thisisms.com/forum/chronic-cerebrospinal-venous-insufficiency-ccsvi-f40/topic20980.html"These guys are quite a piece of work. If only they spent as much time really helping pwMS as they do blogging against CCSVI research….sigh."Gosh, how awful. Professor G is neglecting his duties as a neurologist? What does the Venerable (or should it be venemous?) Joan do to help PwMS? Oh yes, she writes about the HUGE CCSVI industry and how everyone will be cured. Or not. Of course if you aren't cured by Liberation then it must be Lyme. Another mind-blowing blog was this entry at owndoc.org where the 'doctor' claims that MS doesn't exist at all. I wonder why you bother – except that an awful lot of people with MS who are very, very grateful for your blogging and research. Thank you.
this site is full of juvenilles in oblivion Why doctors are more dangerous than guns – Health Ranger investigation you tube watch to realise whats really going on WAKE UP
Wow. And I thought last night's presidential debate was contentious. :/@Anonymous 7:29:00 PM: Can't agree with you more about Prof G and his team! IMO, Joan is our Jenny McCarthy.
Drink water!!! Quit dehydrating yourself…its so much cheaper to drink water..far less risky and non invasive compared to Venoplasty
Drink water love it…guesd you saw presentation at ECTRIMS too….scary…guess thats why stanford doc veing sued. As much as i want a cure and want to get off drugs i have to be realistic about my disease…ccsvi is not realistic
I have to wonder why you bother with a condition you do not believe exists in the first place.Google Trends doesn't dictate the future of research for MS or any other medical condition.There has been no dwindling of interest in CCSVI or its treatment. The drug companies and MS Societies have been somewhat successful in shoving the truth under the rug.Blogs like this accomodate that effort.The most important statistic to me as a person with MS for almost 20 years is that my power chair is still gathering dust in my garage where it has been for 2 1/2 years. Drugs didn't do it, neither did ridiculous dialog among naysayers. Angioplasty for CCSVI was the only thing that worked for me. All those years with MS are well documented and even my old neurologist can't call this a placebo anymore.
Glad you're doing well and feel that angioplasty has worked for you. However, there is an old scientific saying "anecdotal data, is no data".Proper independent trials from reputable groups need to be performed before this could be recommended to MSers.These are underway and we await the results with the greatest of interest.Best wishesMD2
My anecdote is sparkling as well. I had very good symptom relief after angioplasty, to the point that it is life-changing. I think it would be better if the trials were conducted as prospective multicenter randomized trials conducted by interventional radiologists with experience in diagnosing and treating CCSVI. The trial underway in Albany is not multicenter. The trial in Canada is using IRs who have never performed a CCSVI procedure. The trial in Italy is being conducted by Dr. Zamboni, so it may not meet your criteria of independent. I do not think it is correct to say that proper trials are underway, despite the need for them. It is possible too that there is a subset of MS patients such as Linda and myself who especially benefit from the procedure, and it would take a trial of large numbers of patients to tease out such a subset in the analysis, compared to placebo. First things first, with the trials that are underway.
Rather than looking at trends on internet hits, why not check out the growing research into CCSVI. By now, everyone knows that finding CCSVI by ultrasound is operator dependent. Also, huge studies into the safety of venoplasty for CCSVI had been completed, showing it as being very safe. If you use the huge numbers of people who have had the procedure done to show the context of safety issues, you will find it very safe. Also, the results on correctly done treatment for CCSVI are coming up in credible studies. Personally, I was headed downhill, and only downhill. Now, I am seeing steady improvement. No placebo effect here. Funny how the ups and downs of MS happen to hit an 'up' immediately following treatment–almost like you can control it. Also, there are verifiable results in my case. My eye doctor was surprised in my last checkup to find that my eyes had actually remained stable instead of getting worse. Science is based on the observable, not conjecture. So there is a new openness to listen to patients? Then go to the CCSVI. org website for credible studies on CCSVI. It is not going to go away with so many people who have seen improvement. So many emotions here and not enough science. We still need neurologists. Damage has been done and needs repair. CCSVI has its immuniological aspects. There is often hydrocephalus involved. CCSVI is more complicated than what was thought at first. Olive branches anyone?
" Also, huge studies into the safety of venoplasty for CCSVI had been completed, showing it as being very safe."This ignores the fact that some have died after the procedure.Again if you feel it has worked for you, great but I refer you to my comments above. To suggest that CCSVI.org is in some way an unbiased source of information is, I suggest a little naive.On a personal note my aunt had angioplasty for "hydrocephalus" for her neurological symptoms 18 months ago. She in fact had fronto-temporal dementia with motor neurone involvement. The procedure needless to say was entirely ineffective and entirley inappropriate, save for lightening her wallet and placing an unnecessary stress on an already frail woman. She sadly died last week.Our overwhelming concern is the same situation is not being inflicted on desperate MSers without good evidence that it is appropriate.
I didn't say that it was totally unbiased, but it does present information that is missing elsewhere. Other medical studies are biased also. In regards to safety, all medical procedures carry risk, but the question is one of risk to benefit ratio. Leaving veins blocked carries a huge risk in itself. 400 people a year die from MS every year in Canada alone. What about the risk of the Meds that doctors seem to be okay with prescribing for MS. We all know of the people who have died as a direct result of some of the meds out there. I myself had to be hospitalized on first dose of a new med for MS–others were not so lucky. I'm sorry that your aunt didn't see improvment. It is hard to know how angioplasty might help hydrocephalus, thought there could be links related to inflamation. However, what happens with dementia is not the same as to the case of CCSVI and MS. Statistically, 30% of people treated by venoplasty for CCSVI say significant improvement in symptoms and another 30% saw some improvement. This coming from a survey of several thousand. Also calling people with MS desperate, first of all paints everyone with the same brush, and it seems to imply that we are not using our brains. The above article stated that we are not stupid and times of desperation often bring about our most brilliant thoughts. Many of us are very well educated and we carefully research new theories and treatments. If people check, there is an ever growing body of evidence to show that it is appropriate. We don't need to be 'protected'. We have brains enough to know that blocked veins should be opened–that part is not rocket science, though more still needs to be learned. There will always be charlatans practicing what they have no right to be doing, but that doesn't mean that there are also not very competent doctors practicing this–competent doctors that also do angioplasty for failing hearts, for example.Having said this, I will acknowledge that there are many unknowns about CCSVI, but we should have open minds and exercise prudence. MS, on the other hand won't wait. While there are some dangers with venoplasty, they have usually been because of a lack of followup care or by pushing the boundaries too far. However, in regards to the risk to benefit ratio in MS–MS is predictable in its work and always does a great amount of damage.
"This ignores the fact that some have died after the procedure"There are 4 registered deaths related to ccsvi procedure so far. Do you have some more (informal) information on this?
many more deaths have occurred as a result of Tysabri yet it continues to be marketed. 4 deaths is an acceptable number and CCSVI treatments shouldn't be dismissed until the nature and causes of those deaths is examined. What is the holdup with CCSVI studies anyway, take 500 people with MS and obstructed veins, remove the obstruction and observe if there is any symptomatic relief and record the results. Safety of venoplasty is already well established.
The reason that there is not as much internet traffic about CCSVI is a lot of MSers are waiting on the results of trials. The trial at the Alfred in Melbourne could take as long as 5 years to analyze as MS Research Australia is not prepared to divert a small percentage of it's finding to this trial. I am absolutely convinced that there is merit in this procedure as my daughter who was rapidly going down hill with horrendous symptoms and never ending episodes has been drug free and episode free for 3 years. I have been privileged to witness other incredible CCSVI stories in Melbourne before it was closed down.
Thought you might find this an interesting read. regards as always.https://www.facebook.com/notes/ccsvi-in-multiple-sclerosis/science-statistics-and-ccsvi/10151212514102211
They (neurologists)have invested decades into the EAE model, and billions and billions of dollars ride on their theory.most neurologists i know do not like eae model