CCSVI..the last nail?

People with chronic diseases that are not adequately controlled, often turn to alternative medicines.

This is not a surprising response, but few of these alternative treatments have generated so much polarisation of opinion as the CCSVI phenomenon.

MS was caused by blocked veins…a bit of venoplasty to open the vessel and a wonder cure was born. 

Even better you didn’t have to deal with neuros as you could get the treatment, at a price, by non-neurologists. Social media, unchallenged by neuros until it was too late, propelled this into the public eye.

Canda and Italy were CCSVI-central and the MS Socieites there felt compelled to use their research budgets on validating the presence of blocked veins and the value of venoplasty.

It all came to nothing

Is this the final nail?
Traboulsee AL, Machan L, Girard JM, Raymond J, Vosoughi R, Hardy BW, Emond F, Gariepy JL, Bone JN, Siskin G, Klass D, Isserow S, Illes J, Sadovnick AD, Li DK. Safety and efficacy of venoplasty in MS: A randomized, double-blind, sham-controlled, phase II trial.Neurology. 2018 . pii: 10.1212/WNL.0000000000006423. [Epub ahead of print]

OBJECTIVE:To determine the safety and efficacy of balloon vs sham venoplasty of narrowing of the extracranial jugular and azygos veins in multiple sclerosis (MS).

METHODS: Patients with relapsing or progressive MS were screened using clinical and ultrasound criteria. After confirmation of >50% narrowing by venography, participants were randomized 1:1 to receive balloon or sham venoplasty of all stenoses and were followed for 48 weeks. Participants and research staff were blinded to intervention allocation. The primary safety outcome was the number of adverse events (AEs) during 48 weeks. The primary efficacy outcome was the change from baseline to week 48 in the patient-reported outcome MS Quality of Life-54 (MSQOL-54) questionnaire. Standardized clinical and MRI outcomes were also evaluated.

RESULTS:One hundred four participants were randomized (55 sham; 49 venoplasty) and 103 completed 48 weeks of follow-up. Twenty-three sham and 21 venoplasty participants reported at least 1 AE; one sham (2%) and 5 (10%) venoplasty participants had a serious AE. The mean improvement in MSQOL-54 physical score was +1.3 (sham) and +1.4 (venoplasty) (p = 0.95); MSQOL-54 mental score was +1.2 (sham) and -0.8 (venoplasty) (p = 0.55).

CONCLUSIONS: Our data do not support the continued use of venoplasty of extracranial jugular and/or azygous venous narrowing to improve patient-reported outcomes, chronic MS symptoms, or the disease course of MS.

This is a  study looking at the value of venoplasty (using a balloon catheter to unblock the blood vessels), which was blinded and randomised.Surprisingly in this study they found that half of those examine had bloccked veins. Many other studies argued that this feature was an artefact. So in the people with blocked veins, they performed venoplasty and it was found to be of limited value. Hopefully this can be put to bed now

So Canada has (in my opinion) thrown good money, which could have been better spent elsewhere, down the toilet by investigating this in so many different ways. (I suppose this is your MS Society.. and maybe I should not comment. After all they are responding to what you want to know). Perhaps 

I should also say before academics get on their high horses, that we academics have likewise pressed the MS Societies to investigate many weird and (again in my opinion) often not so wonderful things. 

Time will tell if I have to eat another slice of that pie, but I somehow doubt it:-( 

Will this change the views of the CCSVI fanatics?…Probably not (I’ll be reading their twitter accounts:-)…as there is a conspiracy..Not.

Remember Don’t shoot the messenger

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  • bs ccsvi works for some people like me. i have ppms. i had five veins blocked wirh jugulars at 90 & 80%. when opened my ability to speak went back to normal. my ms hug left and migrains went away. its been 8 years. other improvements were better balance and walking speed. due to bad valves the left jugular closed back up and walking left. because you can't stent jugulars i have to live with bad valves.

    • We might be getting a few more of these comments. Just remember to treat these with caution as there is no way of checking the veracity of the comments.
      Let's go with the now significant number of clinical trials that have demonstrated beyond doubt, (including one by Dr Zamboni, the father of this daft idea), that the concept and the procedure are of no use at all, except to significantly lighten your wallet.

    • I guess together with brain atrophy some veins can lose their shape and block, but from that to be the cure of MS… well logic is lost.

    • and yet we are supposed to accept ocrelizumab on the basis of just one RCT study of ocrelizumab in PPMS with highly dubious analyses (see EMA's public assessment reports for a useful starting point, including the CNS-SAG's appraisal..)?

    • They only have to do one as there are no options. However I can assure you that Roche are spending millions doing the next trials and having a drug they can profit from helps them do this. A trial may costs 150,000,000 dollars

  • And now Canada is spending millions and millions for a trial for aerobic in PPMS… I mean, cool but no need to be that huge for such a plain idea that if it could bring phenomenal results we would already have known… Very defeatist attitude for the interventions PPMS can hsve. They should see what MS Society in UK is doing 😉

  • MD you suggest that you scientists are investigating that you think are a waste of time. What are they? EAE for example?

    • I may be crazy but I'm not that crazy to give out a list.
      Maybe I should do a list and plant a time capsule.

      What do you think?

      However as for EAE I disagree. It depends on what you use it for and how you use it. I will not give it a green card and say every thing is ace, it clearly isn't, but likewise it does not deserve a red card either.

      In the UK the Home Office and the Animal Rights people will ensure it disappears sooner or later I suspect:-(

  • CCSVI would not have existed if there was one meaningful treatment for progressive MS that provided hope. There is zero remyelination, neuroprotective or neurorestorative therapies. Pharma have been making > 20 billion yearly for many years now. What is their impetus to find an effective treatment or cure to stop progression and improve clinical status?

    I do not consider "hope" in the form of siponimod or ocrezulimab for progressive MS. They show results barely above placebo in terms of statistical significance (<23%). A patient will get worse just maybe a little slower with the same endpoint.

    I am surprised that both MD and MD2 respond to a fellow researcher (Dr. Zamboni) with such disdain. He had a new hypothesis and tried to prove it and it failed. He showed CCSVI failed to provide a meaningful effect above placebo.

    I thought negative data was as important as positive data in the research world? He released all the data which is quite unlike pharma research. Pharma has proven time and again to have little interest in furthering collaborative MS research and keep negative data hidden.

    • I agree fad treatments come from our failure to provide solutions, and also the presence of greedy people/clinicians who take advantage of people's illnesses and there vulnerability.(Of course we could argue the US health care system is built on this notion)

      You try and disprove and when you do, you change the hypothesis. Yes the CCSVI-Bard did the experiment and it failed. However the FAD treatment has the common theme that you don't need a neurologist to do them. HSCT (Ok there is science behind this). As soon as the microbiome research fad started, I was predicting faecal transplant treatment to be offered and taken up..It's happening…researchers are going to do lots of trials in every disease, more people will think why wait for the trial to shown results…of to the health resort.

      Respond with should see what we say about people we really don't like or rate:-)

      The students are in for a treat this week as I teach 'How to read a paper'. Who's work is going to get monstered in that one as we critically appraise the work.

      Yes he did publish the work so good on him. I fear it is not only pharma that we should be wagging our finger at for not publishing trial results. Academics do it too.
      What happened to the WIRMS trial of eating there was a potential fad that didn't catch on. What about me and the spasticity trial.

      All quiet on the East End front for quiet some time.

      I,LL tell you next week OK?, I promise.

    • "CCSVI would not have existed if there was one meaningful treatment for progressive MS"

      Treatments don't exist in of themselves..there has to be a theory
      of progressive disease process to come up with treatments.

    • I disagree. Statins for example. I asked the senior people of the STAT trials about the theory. I had a chuckle when they gave me their ideas.

      It reminds me to write paper on potential mechanisms as they need some help:-)

  • ccsvi is not ms. their is a good video on youtube called separating ccsvi from ms which explains overlapping symptoms in detail. people with ccsvi may have ms as well. its the ignorant idiots who claim ccsvi is a cure for ms. it was never taughted as a cure except for ignorant people who no nothing of the disease making false claims.

    • Re: "… ccsvi is not ms."

      Yes, that is correct. MS is a disease, i.e. it has a clinico-pathological correlate. In comparison, CCSVI is not a disease, it does not have a clinico-pathological correlate. There is a science behind the classification of diseases and if you apply this to CCSVI you soon realise it that it is not a real entity. However, this did not stop a lot of people becoming very wealthy out of it. Nor did it stop a lot of MSers becoming poorer for it spending their and their families life savings on ineffective treatments for a non-disease. And that is the real tragedy of this story, which thankfully is almost over.

    • how does it compare to the amount of money, time, energy and hope wasted on daclizumab? about the same? it happens to the best of us.

    • I suspect more; the difference is that this is personal wealth that has gone. I have several patients who are now destitute after selling their homes and pensions to pay for expensive CCSVI treatments abroad. My one patient had the procedure done three times and the centre wanted him to come back for a fourth treatment. He had run out of money after the third treatment.

    • "I suspect more; the difference is that this is personal wealth that has gone."

      Same thing with people getting HSCT abroad thinking it will help
      progressive MS.

    • "Same thing with people getting HSCT abroad thinking it will help
      progressive MS."

      Adam don't be hasty. We have still much to learn about HSCT, there are many grey areas to be understood (including why it works to some progressive patients). We first need to understand what progressive MS is.

    • CCSVI is the perfect tool in the hands of conservative doctors/scientists to discredit any initiation patients take on their health. However, those initiations can promote science and patients health ultimately. Even if CCSVI didn't work (as if it was the only thing money was wasted on).

    • i had closed veins and got treatment and benefited i could speak again migraines left that's eight years no. so you cant say closed veins and damaged valves are not a problem. yes i had i was treated for ccsvi not ms. get educated before making stupid ignorant remarks you know nothing about.

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