Tuesday, 20 March 2012

CCSVI Conspiracy

Based on yesterdays post about the pdf sent to the Prime minister and MPs about the MS Societies apparent collusion with Neuros and Pharma to prevent access to CCSVI. Sherlock Mouse and Dr. Whatmouse asked Dr A from Cambridge, his opinion on the slurs.

Doctor Coles said

"I don’t quite know why people would think we want to deny people effective treatments!"

So all we need is definitive, robust evidence that such treatments are effective. This evidence one way or the other is coming.... but the conspiracy is in the heads of some people.

57 comments:

  1. how can CCSVI be a conspiracy ? this is a crazy way of viewing it, especially after 30,000 worldwide have now had even Montel Williams

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  2. Doctor Coles said

    "I don’t quite know why people would think we want to deny people effective treatments!"

    answer to this is start doing CCSVI then ,other procedures are done to many patients daily thats NOT clinically trialled yet given, so where is the logic , it doesnt make sense whats going on

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  3. The logic is that the neuros are waiting to see the data from rigorous clinical trials to see if there is evidence that it really works above a placebo effect.
    Remember the placebo effect is massive.

    Using this logic you dish out pills without knowing if they work and are safe. Alternatively I could say a holiday at Butlins helps so we should all get holidays
    Where is the definative evidence?

    I will accept that the procedure appears safe. But if those 30,000 neuros did proper follow up we would know alot more than we do now.

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  4. How can this be a conspiracy because Montel Williams has had it. The conspriacy is that people somehow think doctors do not want an effective therapy and are doing their best to stop it.

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  5. The conspiracy is an imaginary conspiracy in the heads of some ccsvi'ers. They imagine that big pharma and MS societies and neurologists are in an evil conspiracy to stop MSers from getting well.

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  6. It means that 30,000 people have PAID for a procedure where there is no hard evidence that it works, does the (phenomenon realy exist)...this is no conspiracy this is fraud and theft from the vulnerable.

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  7. Can't help but wonder how many people who are CCSVI believers also believe that the MMR vaccine is a cause of autism?

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  8. many beleive the medics are worried the real TRUTHS are now appearing , 1860s CCSVI has been known of how many more years and MS deaths will happen because of the medical neglect ,many worldwide knows whats really happening to protray as a conspiracy means someone has mental health issues .Its DISGUSTING whats really going on , many should hold their heads in shame

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  9. why hasnt no one in UK started to do CCSVI answer is no one has the backbone and are gutless

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  10. the person who say conspiracy is mentally ill get HELP fast

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  11. placebo effect is someone also with an obssession GET HELP fast again

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  12. NHS should of done CCSVI in the 1970s thats how slow you all are , way too slow perhaps if you spent time doing something instead of sitting on a computer talking utter rubbish and doing work we would of moved faster in UK the pay is too good and easy thats why .You need a kick start and to move forward in UK instead of didhing out stupid comments about conspiracys and other mental health issues you have , no wonder Uk is behind with people so negative doing such negativeness. You ahve all been rummbled wake up to it and start doing something useful

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  13. Perscribing Medicne is evidence based...where is the evidence?
    This is the central issue.

    If is not about spine, gut..just information.

    There are UK proponents,out to make a buck,

    There are millions of pounds are being spent on addressing this issue worldwide. We do not need a study in every country to work out if it works. To start the trial process now, would mean that one has the results from other studies before you would get one off the ground.

    Once it is show to work then things could change quickly

    Doctors-Spineless and gutless, perhaps on some issue

    What about Scotland

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  14. many beleive the medics are worried the real TRUTHS are now appearing

    Yes Medics are worried about the TRUTHS of the planned NHS health reforms 7 out of 10 think so

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  15. Canada, Australia and New Zealand ARE doing clinical trials UK is so slow and behind just proves how uneducated and useless they look

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  16. UK are too lazy to do anything and are gutless , not one person has the backbone to move forward shows that their patients in UK come last and NOT first breaking all the laws and lots more .

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  17. think youre paid too well, weekends time and half double time sundays lots more too. UK is very lazy at doing things and too slow also and spend too much time on a computer insetad of working here is the proof

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  18. patients have paid because the lack of knowledge and sheer lazyness of the ones in their own countrys who are still uneducated and very slow at realising lots still. Also because they have been refused help MEDICAL NEGLECT

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  19. "UK are too lazy to do anything and are gutless , not one person has the backbone to move forward shows that their patients in UK come last and NOT first breaking all the laws and lots more ."

    Speaking as an invertebrate, I'm proud of having no backbone, thanks very much.

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  20. "think youre paid too well, weekends time and half double time sundays lots more too. UK is very lazy at doing things and too slow also and spend too much time on a computer insetad of working here is the proof"

    You're labouring under a misapprehension here.I work weekends for free, no time and a half or double time for me. I do it because I want to see better treatments and hopefully a cure for MS.

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  21. And people wonder why we don't allow comments on most CCSVI-related posts?
    There are plenty of reports of other MS sites being ruined by the CCSVI "truthers" out there. Here's yet more evidence.

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  22. Canada, Australia and New Zealand

    Are not three trials enough to know if it works or not.

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  23. ‘Prescribing Medicine is evidence based...where is the evidence?’

    Apparently, according to Prof G’s latest post, trending topics on Google count as evidence against the worth of this treatment for venous stenosis. (?)

    Also his ‘four social drivers of the apocalypse’ are entirely subjective depending on whether you consider the idea that blood refluxing up in the direction of the brain is a good, bad or indifferent state of affairs. One mans ‘miraculous responder is another mans ‘responder’.

    Even in his summing up of the trials now taking place he feels the need to pre-judge them. Honestly, I slap my forehead in disbelief….

    As you don’t allow comments on your CCSVI posts then please just stick to facts.

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  24. "spend too much time on a computer insetad of working here is the proof"

    Speaker phone and talks of new drugs- hands free to type. Multi-tasking. Now do not tell the wife about that!

    She won't believe you any way.

    The less comments we get the less we respond...so more free time to do other things

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  25. Pre-judgement is opinion......each of us have one.

    This opinion will have no impact on the outcome.......one way or another that is a fact.

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  26. "As you don’t allow comments on your CCSVI posts then please just stick to facts."

    I suggest you do the same but then you'd have nothing to post.

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  27. MouseDoctor, you do make me laugh sometimes ;-)

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  28. "Even in his summing up of the trials now taking place he feels the need to pre-judge them. Honestly, I slap my forehead in disbelief…."

    As the great Keith Richards opined " opinions are like arseholes, everyone's got them", though some are more inclined than others to wave them around in public! ;-)

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  29. For our Americans readers
    arsehole = asshole

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  30. mouse doctor says it all NO man a real MOUSE , also someone whos not done the real researches and talks utter rubbish about something they havent a clue about.Lets hope the health reforms gets rid of these types who are useless to their NHS in UK

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  31. Doctors who have been struck off or even suspended have been ignoring sanctions imposed by the General Medical Council - and carrying on working regardless.Lets hope ones who are failing patients like youreselves are got ridden off.For failing MS patients and spending their time online talking utter rubbish .One like yourselves do not deserve their roles for not working in the best patients interests its DISGUSTING how youre behaving considering youre supposedly professionals

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  32. Dear Anonymous (above).
    Your entitled to your opinion but please refer to my comment up thread 12.55.
    I don't work for the NHS, I work to treat and hopefully one day cure MS.

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  33. 3 trials or NOT UK should be helping their patients not disgcussing online instead of doing a proper days work , its obvious youre in the wrong professions an dlets hope youre never terminally ill and refused treatment because none of you would ever cope at all , Your too weak

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  34. I found this blogg about a month ago and really do appreciate the work and time you put into it. I am greatful you do this so I (MSer - though not feeling suffering) can find information with scientific background.

    Occasionally - like today - I wonder why you put so much energy and time into people like VV and the comments of e.g. anonymous in this post. The person here did not even care to write reasonably understandable English (or maybe mine is too bad to understand it, it's not my first language). Still these people ALWAYS get some kind of reaction, no matter what nonsense they write.

    Like I said I have MS. I am pretty interested in what's going on in research. I am pretty interested in finding reliable information (I consider your blogg reliable). And of course I have a lot of questions. I am still kind of fine, but MS is a scary disease and I try to live in a way so I hopefully will be as fine as possible.

    So it feels kind of frustrating that people like VV and Anonymous always get an answer, though one wonders if they really are MSers. Whereas I never got any reaction to my questions. I understand you don't have time to answer all questions but I wish you would think about your priorities.

    Anybody who still has a reasonable amount of neurons and axons left won't take posts like from anonymous above seriously, I don't see a need to comment on every one of them. And as for those who want to believe them - I figure you could write whatever you want but you will not get through to them.

    my unanswered questions (though the second one was answered in a post about hot tub tests a view days later)
    http://multiple-sclerosis-research.blogspot.se/2012/02/research-structure-of-gilenya-receptor.html
    http://multiple-sclerosis-research.blogspot.se/2012/03/ms-symptoms-and-heat.html

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  35. Anonymous (17.00).
    The reason we respond to the above posters is that if we didn't some visitors here would come away with the impression that there is something in this CCSVI nonsense and potentially waste a substantial amount of their own money on what is in my opinion a quack therapy.
    Apologies if we haven't always answered your questions but sometimes they can get a bit lost in the blog structure. Sometimes we aren't qualified to answer, though perhaps we should make that clear.
    All the best MD2.

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  36. Dear Anon 17:00
    In part answered but Prof G needs to answer this MDs try not to answer these clinical questions.

    But give him a nudge and he usually responds or one of the other docs

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  37. MouseDoctor2, I perfectly understand your point. Though sometimes Skinner (behaviorism) and his reinforcement ideas come up in the back of my mind. If they don't get a reaction (reinforcement), maybe they would eventually stop and move to other places on the internet?

    Your posts on CCSVI make it clear that you don't support CCSVI. So the information is out there on this blogg for anybody who wants to read it and take it in. Then people can decide for themselve if they rather believe a post published by researchers/neurologists/scientists working with MS or some "Anonymous" coming up with strange accusations.

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  38. Tomorrow is another day and hopefully will be a CCSVI-free zone until the monthly round up of research news at the end of the of research news.

    We will probably have chilled.

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  39. Please, MD2 , think about your blood pressure. You've given them the space to rant and nothing is going to change their minds, and if anything, they've shown themselves to live way beyond Barking. Let's get back to the proper science.
    By the way, I've had loads of my blogs answered.

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  40. Here's the proper Scientists quoting theory as fact, our very own trusted Dr. Coles stating that MS is an auto immune disease.
    http://www.youtube.com/watch?v=XuTpTVHH9z4
    Could some one please point me to the scientific proof of this?
    All the points in this pdf are absolutely factual you can try and twist it how ever you like but if people take the time to read the information fully they will see for themselves whats going on here.
    The scientists are relying on people just taking their word for it and not reading the whole thing, i would say read the whole post and follow all the links, it is all there in black and white.
    Ask yourself why would so many everyday people like you and me with MS stand up and put their name to this document as they have done at the end?
    This is not the work of a crazy gang it is the work of people who care enough to stand up and be counted for the good of us all.

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  41. Given that the tactic of "ignore the wingnuts and hope they'll go away" didn't work against the anti-vaccine activists, I don't blame the MouseDoctors for feeling the need to confront and correct the misinformation the CCSVI activists are spreading. Just like the anti-vaxxers, social media is being used not only to spread their message, but to gain converts to their cause. The hope is that, with enough people, they can side-step the science and win based on sowing doubt and increasing their cause's popularity among the masses.*

    That said, my main concern is the ramifications their anti-science attitudes will have on future MS research. Because of them, I have little hope that there will be any effective treatment when I and other RRMSers become secondary-progressive.

    BTW, since when is Scotland no longer a part of the UK?

    *The same can be said about the HIV/AIDS, climate change and evolution denialist movements.

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  42. Dear Anon 11.06 pm
    Take the time to read the BLOG the autoimmune hypothesis is just one view.

    MS has an immune component...your genes tell us this,

    The response to Immune therapy tells us that the immune response is part of the problem.

    All of the points in the PDF are absolutely factual!.

    Well the read yesterdays posts on this blog about me and you can see that there is "mushroom food" in the so called facts,

    Read the posts on the Blog! John Prineas would not agree with your take.

    Prof G has been employed by the university all the time I have known him ...not the pharmaceutical industry according to your facts.

    Prof Ebers has a view on the context that you portray his words which we will hear of.

    Dr X has received speaking honoraria from Y.....my mum has a bus pass does that mean she can't say they don't run on time and the service is rubbish?.

    Scientists are waiting to see the evidence!!!!!!!!!!!!!!,

    people have made their point and the MS Societies have listened and responded and studies have been initiated.. you will get your answer.

    You have had your say, your post is on the blog for anyone that cares to read it.....it is full of inconsistensies.....

    It is not the work of a crazy gang...whilst understand your intentions..some of the comments may let you think others wise.

    Why would you put your name at the end....maybe you want to be sued for slander or deformation of character

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  43. OK the pdf made a point some people may listen, some people you have upset. I'll stop the replies now

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  44. MouseDoctor2 perhaps you and many others will be sued !!

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  45. pleased the replies from the MOUSE are stopped because it was all rubbish anyway

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  46. All rubbish-then don't read it
    you have a choice

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  47. Mousedoctor please switch off comments on these threads and go to sleep

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  48. Thanks for all the valuable research material for our new study "Cognitive dissonance and CCSVI" to be published soon!

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  49. My head is spinning after reading this thread.

    Enough already guys!

    Let's focus on getting a treatment for progressive MS that works.

    Once we achieve that then all these comments will be rendered moot.

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  50. "Let's focus on getting a treatment for progressive MS that works."

    That's exactly what we spend our time doing 24/7/52.
    That some consider we're wasting our time (though none seem to have any qualification to make such a judgement) does get us a little aerated from time to time. A little venting is good for the blood pressure!

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  51. Dr Williams please read before you type. The legal action threats are all from your friends.

    Nobody in Team G engages in 'childish putdowns' of people who comment here.

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  52. Dr Williams,
    I think you'll find that legal action is the threat from your side of the divide, perhaps reflecting the fact that such a threat is popular on the other side of the pond.

    "You would do well to recognize you are not the only people in the universe who can read and understand scientific data."

    I think you confuse understand with misinterpret.

    Prof Prineas is on record as stating that his findings in no way support CCSVI. Get over it. His findings certainly deserve further study but They are isolated and may not be reflective of more typical MS.
    If the put downs come over as childish, it merely reflects the frustration we feel at the constant mobbing of MS sites by your fellow "believers".

    Charcot published his findings more than 100 years ago, believe it or not things have moved on a little both scientifically and technically since then.

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  53. This comment has been removed by a blog administrator.

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  54. I have had Balloon Venoplasty of both internal jugular veins and Azygos veins with amazing benefits, I don't walk better. But I do have FATIQUE, so not asleep on the sofa all day. I do not choke nor cough on my own saliva, or when I eat or drink. I can breath easily, so don't get terridying PANIC attacks. My left jugular as seen on VENOGRAM is very thin and the Valve is small,so blood puddles above around my left shoulder collateral veins attempting to compensate, it propably needs a bye pass, as I have heard of some ladies had in Mexico with great relief. We do not expect Miracles. But if opening valves in veins allows improved blood flow I hope young people being Dx with MS label today will not get as bad as I have after 35 years since my diagnosis.
    My husband not MS Dx but has many symptoms, had Venoplasty, he now does not have sleep apnoea nor snore and feels relieved declares he feels ten years younger . This is a REALITY. Facts which cannot be denined.

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  55. ytpo, oops,
    I NO LONGER HAVE fatique, ie do not have it.

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  56. Seriously, if this CCSVI madness doesn't stop then I'm leaving this blog.

    Please drop it doctors. It's confusing and muddled. We know CCSVI is of the Devil. We get it man. Even though timewasters are aiming to derail your good work, the CCSVI brigade will never relent, therefore, please ignore them.

    All you CCSVI troublemakers need to go away. I know that you're all trying to spoil this blog. In fact, you may even be trying to get the Barts team to eventually drop the blog because of all the gas you're spinning. The shame is I can see the Barts MS team getting fed up and thinking this whole blogging thing is too much effort to waste on their part.

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