Monday, 9 December 2013

CCSVI: a call to neurologists to engage

CCSVI a call to engage. #MSBlog #MSResearch

"It took sometime to get this article written, but we couldn't pass up the opportunity of using Google Trends to study the CCSVI epidemic. CCSVI has behaved like a typical meme (infectious idea) and spread across the globe with epicenters in Canada and Italy."

"Arie Gafson a young academic fellow volunteered to do the work and write-up the paper. Arie has done very well and captured the essence of the phenomenon of CCSVI. We make recommendations for how clinicians and scientists should deal with phenomena like CCSVI in the future. In essence we need to engage the community and understand that a patronizing attitude will not be tolerated."

Gafson & Giovannoni. CCSVI-A. A call to clinicans and scientists to vocalise in an Internet age. MSARD published online 21 November 2013.

In 2008, Paulo Zamboni pioneered the ‘liberation procedure’ for treating multiple sclerosis (MS), claiming that MS is caused by an abnormality of venous drainage which he called chronic cerebrospinal venous insufficiency (CCSVI). CCSVI has been very controversial, both socio-politically and scientifically after going ‘viral’ via social media. In late 2012, only 56 original scientific research papers had been published on the ‘CCSVI syndrome’; however, over 1,150,000 hits on Google existed when searching for the term ‘chronic cerebrospinal venous insufficiency’ or CCSVI. It is unclear whether the scientific community’s response to CCSVI was influenced by Zamboni's original articles, a reactionary response to the ‘social phenomenon’ of CCSVI or indeed a complex interplay between both these factors. Furthermore, the epidemiology of this ‘social phenomenon’ remains un-investigated. A PubMed literature search revealed that the greatest level of public interest in CCSVI, as measured by Google Trends, occurred after only 30% of primary articles and 11% of negative studies were submitted for publication. The epicentre of social epidemic has been divided between Italy and Canada. Whilst Canadian scientists had yet to publish a primary article on CCSVI, it had a relative 76% search volume on Google Trends. It is likely that this public interest was sparked by media and political opportunism and fuelled by social media that was disconnected from the scientific community. Our findings call for a concerted effort for clinicians and scientists to engage with the public to ensure that uptake and spread of scientific discoveries via social media are viewed and interpreted in an appropriate context. Examples of how this may be achieved will also be discussed.

CoI: this is our work

39 comments:

  1. The most frustrating aspect of the CCSVI epidemic was not the clinical trial that consumed resources and found no connection between venous drainage and MS but the fact that so many patients had the procedure done. It's difficult to understand how physicians can perform a procedure without any conceived benefit to the patient. How many unnecessary surgeries were performed? Malpractice? Will there be a class action lawsuit for performing a bogus medical procedure? It will be interesting to see if there will be any legal ramifications.

    ReplyDelete
    Replies
    1. The lawsuits have already begun:

      http://www.businesswire.com/news/home/20121010006553/en/Lawsuits-Stanford-Dr.-Michael-Dake-Experimental-Procedures

      Delete
    2. All the quack clinicians and charlatans who have taken money from innocent MSers in relation to CCSVI treatments deserve to be struck off the GMCs register and forced to pay compensation.

      Delete
    3. There is much more to CCSVI than medical doctors, (Neurologists), acknowledge. It is the Radiologists and Vascular doctors who should be doing the research as Neurologists have a bias against CCSVI. (Would it be appropriate for Radiologists to do research on the Nervous system?)
      The reason for the continuing credibility of CCSVI is because of the actual success of MS people having the proceedure. I am one of those and I can say without a doubt the CCSVI proceedure worked for me!
      Sincerely
      Richard Beecroft

      Delete
    4. And podiatrists should be investigating the cause of hypertension.

      Delete
  2. Paywall. Sadly, cited article cannot be read by blog readers/MSers.

    I would appreciate if your work would be Open Access.

    ReplyDelete
    Replies
    1. I have university access and put a copy in pdf on dropbox to share -- all in the interest of open information and communication.
      https://www.dropbox.com/s/0iof08sontbyh8b/CCSVIinInternetAgeGafsonGiovannoniOct2013.pdf

      Delete
  3. I think this is not just a result of msers on social media, but is promoted by unscrupulous interventional radiologists looking to make a profit off of the hype. I used to have a high regard for medical doctors, but after this experience I think there is corruption even in the most respected professions.

    ReplyDelete
    Replies
    1. Profiteering medics are the route of most fad treatments. Perhaps if there were consequences for providing unlicenced proceedures for quacks. However how would that affect private practise and perhaps this is part of the problem dealing with quacks..

      Delete
  4. What really screams for scrutiny is how so many non-affected by the scourge of this disorder - and I have it - it took my vibrant life - trashed it - could be so clueless about why "so many patients had the procedure done." Most of you don't seem dumb, so it is like watching a rare curiosity. It's called "hope." Have you no imagination? Can you not understand how desperate anyone who has MS is to NOT have it. And it did help many - who've left the pot of controversy you keep stirring and have resumed living the carefree existence they feel so blessed to have recovered. What are you people so jealous of? If you crave the limelight Zamboni captured, believe me, we all wish you lots and lots of luck finding something that will move the needle on MS as much as he did. Until then, just stop all the ripping your clothes and whining.
    `

    ReplyDelete
    Replies
    1. "What are you people so jealous of? If you crave the limelight Zamboni captured, believe me, we all wish you lots and lots of luck finding something that will move the needle on MS as much as he did. Until then, just stop all the ripping your clothes and whining."

      This is a blog about MS research run by doctors and scientists working in the field. Why do CCSVIers come here? Certainly they don't believe anything coming out from the MS research establishment.

      After my recent diagnosis of MS in January I am glad I have the options available to deal with the disease, but the constant diatribe that neurologists and MS scientists are just out for there own self interest is getting old.

      It is a shame that people in a progressive state have little options and I can understand why they would try deferent therapies, but sadly those who are newly diagnosed and gullable enough to believe the conspiracy are doomed.

      Yes, we need a way to reverse the damage in people with progressive disease just like we need treatment for people who sustain brain damage through traumatic head injuries. To be frank, what you are asking for is not possible in 2013 and will not be possible for a long time.

      Delete
    2. Excellent post Elle, right to the target, but unfortunately the audience is deaf.
      What are the widely used arguments against CCSVI?
      1. Doctors make money out of it.
      2. Heavily-pharma-sponsored neurologists are too blind to see something they a priori deny as an entity: "I don't (want to) see it, therefore it's not there".
      3. All patients are brain-shredded and can't tell the difference between an effective improvement and placebo effect.

      Reshaping the above: You, MSer are too dumb to know what's good for you, but don't worry, it's not your fault. Buy the drugs WE give you through the national health system. Don't give your cash to them.

      This ripping of clothes for the patients' benefit is the best proof that CCSVI is real. But that goes for those who read it and understood it.

      It's ok, survival of the brightest. Cheers!

      Delete
    3. What are the widely used arguments against CCSVI.

      Simples.... The ever increasing amount of published data that does not support the concept the biology or treatment.

      However, if the data shows that I need to change my world vision I can do it.
      If venoplasty is life changing.....great. However it means it should be easy to detect a big change and this is where I think there is a problem. Maybe it works for some people but we need to know who it will work for...and I class the first line DMTs as another case where we need to know who it works for as giving the drug to ~70% of people who would not respond to the drug is not something I would endorse either.

      As to giving cash..is that a problem for Docs......well no, as many doing private practise are there to take cash. Most will however be selling licenced treatments whereas the scammers invariably do not and profit rather than some altruism is the mantra. You should not be paying or something experimental.

      All fads treatments have greedy doctors/health professional somewhere in the core. This has no doubt and will no doubt repeat itself time and time again, so don't expect me to defend them.

      As to 2-3 I don't agree either.

      Plus if you are in the UK national health system, you are not buying any drugs, has they are supplied at the taxpayers expense so the argument falls flat I'm afraid and it is the scammers who charge the cash to pray on the HOPE that Elle rightly indicates is the driving force for this..

      Delete
    4. VV the high priest. or zealot. This blog is about science, not religion. I suggest you go and preach your sermons elsewhere. Neuroscienctists have shown that atheism is the learned state and religion the default state of the human mind.I suggest the CCSVIers are the ones who have the deaf ears. Look at the science and not the religion; you will be surprised at the results.

      Delete
    5. P.S. If there was comeback for scamming doctors trying to make a quick Buck then those pendling the next fad treatment will think twice or maybe a least once

      Delete
    6. AnonymousThursday, December 12, 2013 4:51:00 pm

      I don't undertand the claim that neurologists are in bed with "big pharma" and they have a closed mind to CCSVI.

      They really can only reccomend treatments that are approved. Treatments become approved through rigerous testing. They cannot just make reccomenations off of what they read on "WEBSITE Removed"

      The scientific investigation of CCSVI is showing that it is not even a real condition, but regardless, the truth will be found with time.

      In the mean time, if you want un-approved treatments you should go see a witch doctor or maybe even a interventional radiologist. Either of which you can find on WEBSITE REMOVED

      Delete
    7. "If venoplasty is life changing.....great"
      MD, you subtly mix MS cause with MS treatment in order to discredit CCSVI. Venoplasty is just a proposed treatment under the monumental paradigm shift that CCSVI is regarding MS. Even if all venoplasties eventually fail, CCSVI CAN be the true cause of MS.

      Do you get it Anon, or is it above your scientific comprehension?

      Delete
    8. I do not do it to discredit but state the obvious. If efficacy is so starteling as claimed then it can be seen.
      The data do not support a causative effect at best a consequence. Take a step back and look.

      Delete
    9. No i am not concerned with the discredit.
      As to cause the increasing data says this is not causal.
      So i live in a different dreamworld waiting to be disproved.

      Delete
    10. We made questionary in our FB group for patients after PTA. Nearly 30 repied and there was group (8 patients) who didnt got any benefits, 20 got benefits and 12 who had benefits over 2 years. 5 patients (including my wife) got optimal result meaning that symptoms disappeared.
      There are quite many open trials, where results are quite similar to our groups patient experiences, like this one:
      http://www.ncbi.nlm.nih.gov/pubmed/23563645

      Delete
    11. Thanks this is good to know
      The Radak paper above was one of the bright CCSVI lights of the year.

      Soshouldbeeay to spot

      Delete
  5. Dear Bart,

    Instead of linking to a personal injury lawyer's brief in a case that will go nowhere, because both patients were blogging contemporaneous with their procedure about their knowlege of the experimental procedure (thisisms.com) and they signed multiple consent forms as all teaching hospitals in US have. How about a proper news story about a judge's decision regarding irresponsible actions by neurologists who defame CCSVI researchers and doctors without merit, like yourselves. http://www.ottawacitizen.com/health/Ottawa+doctor+facing+lawsuit+from+Barrie+surgeon+over+emails/9172479/story.html

    ReplyDelete
    Replies
    1. French mom..
      There is a slight diffrence between being sceptical to a procedure until it´s been thoroghly researched and proven to have real benefit and take Money from someone to do the very same procedure. That´s how science and resaerch work, that´s what took us from Newton to Einstein. You have an idea, people question it you might rethink or you might prove them wrong but that´s how it works. That´s what offends me most with the CCSVIers, they all seem to go mental when you question them..I mean if the idea is valid it will prevail
      Swedish Sara

      Delete
    2. Im AnonymousSunday, December 08, 2013 9:39:00 pm,

      My name is not Bart but I have been watching the CCSVI phenomenon, and I must say that even if MSers signed a waiver, Stanford should have prohibited this type of activity from happening. I am no lawyer, but it looks like a solid case to me.

      Delete
    3. Angioplasty for narrowed arteries and veins is the most common procedure done in hospitals in North America. It is low-risk, and has a low safety threshold in order to go ahead and do the procedure. Doctors decide in an office cal with a patient and they are inside the veins or arteries in 20 minutes commonly. It is an outpatient office procedure, with less than 2% complication rates. The only controversy is among those specialists who are now being replaced.In the case of CCSVI it is neurologists. (who generally know very little about the extracranial veins in their MS patients and in humans in general, as it has previously been largely ignored). Novel procedures are done every day in interventional radiology without clinical trials. That is the norm. CCSVI in MS is controversial because neurologists are violating academic freedom policies of their Universities and reaching across departments where they do not have expertise and telling fellow faculty that they cannot treat "their" MS patients. It is a classic turf war. How many surgeons in UK still do surgery for ulcers when a 2 week course of ABs has been shown to work better? Some physicians when committed to a particular treatment for all their career will never stop, even when it is out dated. stick with what you know and try to squash that which threatens your status quo. All CCSVI advocates have asked for is research, and access on compassionate grounds for those who are slipping fast. over 700 deaths to PML, fewer than 1% adverse events in CCSVI with 4 deaths , related to anticoagulation therapy and refusal at the ER door for treatment because the patient in Canada went outside the country to be treated and was discriminated against in an unethical manner.....Science will indeed win this argument. Remember which side you chose, and what you did to further the science and answer the questions. We are asking now, what is your conflict? propping up a career spent chasing a failed model (EAE), supporting an industry that has not altered the course of this disease after costing billions of dollars and dominating the discourse for 70 years despite 150 years of science supporting the venous theory?

      Delete
    4. All I ask is show me the class I evidence,.

      Delete
    5. All I ask is let patients get tested and try it and record the results with informed consent.

      Delete
  6. The saddest issue in all of this is that patients with SPMS and PPMS have no treatment options. CCSVI was a complete scam, but the reason it got a hold and went 'viral' was that SPMS and PPMS patients had no alternative. Research teams throughout the world have cherry picked over the last 50 years. They've gone for the easy wins i.e. inflammation. Once they found treatments which could have some impact on inflammation e.g. injectibles which had a minor impact on relapses, they went to town. Too many studies of interferon and EAE, copaxone v interferon etc. etc. No one wanted to take the risk of addressing progression or repair. It's been a slow, slow journey to get to a position where we now have more effective anti-inflammatories. Let's hope they'll be mores urgency in pushing forward with research and trials relating to progression and repair. If not, another CCSVI is waiting in the wings. It's 2014 soon, but for those with SPMS and PPMS is might as well be 1914. I think I'd take the risk of fighting on the Somme than having to watch myself deteriorate wih progressive MS with no treatment options.

    ReplyDelete
    Replies
    1. In the early studies I believe it was claimed that CCSVI was more of an issue for RRMSers than PP/SPMSers, however your point is well taken about having options.

      I do not accept that they have gone for the easy wins, the mistake perhaps was the assumption that the problem in SP/PPMS and RRMS was the same so the solution is the same. Yes there has been a focus on RRMS because this allows pharma to get their foothold before they risk targeting progression. But this risk is being taken and effective anti-inflammation maybe all that you need to allow the natural repair mechanisms work...An answer is in the PMLers

      As to urgency there are a number of studies ongoing and more in the pipeline,however the process is the process and this is slow. Once there is real success in a trial design yu will see the flow invrease.

      Delete
    2. "CCSVI was a complete scam". Your slip is showing.... Please read Anne Kingston from Maclean's Magazine. Debunked? Not so fast. Let the science speak. http://www2.macleans.ca/2014/01/05/ccsvi-2013-debunking-spin-and-legal-drama/Open your mind and open our veins! I ask the Mouse Doctor and all the anonomous naysayers whom are SOOOO certain they are correct in dismissing CCSVI: are you protecting us? from what? who protects us from PML? what is your job here? i say let the vascular experts comment on the wisdom of treating blocked extracranial veins. Should you comment on birth control? broken legs? hair colour? just sayin'

      Delete
    3. The problem is I don't want to read it in a magazine, I want t read it peer reviewed journal like New England Journal otherwise i would take my medial advice from the Daily Mail etc.

      I am not dismissing CCSVI yet, but what I am doing is standing back a looking at the published evidence and I have yet to be effectively convinced.

      Protecting you for what...maybe providing money to some unscrupulous person praying on the fact that the current medical practice is not providing all the answers.

      Linking CCSVI and PML and other drugs is a smoke screen nn-argument, let CCSVI stand or fall on its own two feet, to deflect criticism to other aspects of science, leads to to lack of credibility.

      What is our job?...In this context.commenting on the good and bad news.

      Let vascular experts comment....who is stopping them?. This conspiracy theory is a non-starter. Let the vascular experts get off their bums and show us class I evidence and then we can all shut up.

      Should we comment on birth control, broken legs etc. I think if you read through this blog you will find the answer is yes we do comment. You can take it or leave it.?

      Obviously you feel strongly in this area and you have said your piece we have been here before and maybe will again,

      Delete
  7. Every time CCSVI is mentioned on this blog it incites such venom it is depressing. When it was reported in the press, I asked my Neurologist about it, but he said it wasn't a feasible treatment. I went away disappointed and moved on. The complaint on this blog seems to be about the funding of this research. Millions has been spent on research over many years worldwide on studies that quite frankly I don't know how they got the grant. What is forgotten is that RRMS is unpredictable and an improvement in one's health can be thought to be whatever therapy you used at the time. The cure may come from an unexpected source, as with Alexander Fleming & co.

    ReplyDelete
    Replies
    1. I agree that the cure could come from an unexpected source treatment of stomach ulcers is another good example.

      Delete
    2. Thanks for that. Here's hoping.

      Delete
    3. Your neurologist could have said it is unproven. They could have said they know nothing about it and they should have reached out to the IR team at their hospital and tried to learn more. They will eventually. Young neurologists are training to treat CCSVI in major US Universities. Head of Neurology Society in Taiwan said in Orlando, ISNVD 2012 (I parasphrase) " We don't have MS in Taiwan. We have been treating CCSVI successfully with PTA for ten years". They just published, with Beggs and Zivadinov that Altzheimer's may be acquired CCSVI (jugular narrowing) based on measuring same for 10 years in senior citizens. (Published in peer review high impact journals late 2013) Those who say it is over are not really reading the right journals. Doesn't matter if neurologists agree. There are plenty of other medical mysteries for them to work on. Their specialty will always get the discards from the other specialties when no one knows what is going on. Best wishes to all I'm heading to San Francisco for ISNVD meeting February 7-9 to hear the latest! ISNVD.org Science always answers these controversies despite the challenges caused by conflicts of interest. Follow the money..... follow the science.....I am pleased to go on record saying that despite the misinformation on this site, CCSVI is good news for people suffering this scourge.......

      Delete
    4. We just report on what is published. Is it mis information?.....This is what the academic press is saying...if you want to get your medical advice from the Daily rags and Magazines then the only information I can give is be sceptical

      Delete
  8. Anyway if you want to gust about CCSVI you have got the websites where you can go.

    I have now turn comments off as was standard practise for these posts. We get the same comments and you will get the same answers.

    ReplyDelete