Monday, 19 March 2012

CCSVIer's Smear:These Colours Don't Run

Given Today's story floating round the web of myself dressed in my advent calender gear, today I am in my fighting outfit. I KNOW WE WERE TALKING ABOUT GETTING THE BLOG MORE AIRING....THANK YOU, BUT NEXT TIME PLEASE MAKE SURE YOU INCLUDE A LINK. THIS IS A REAL OPPORTUNITY MISSED.

So for the people writing the " Time to talk about the billion dollar elephant in the MS room" can you get your facts right. We are not Shift.MS, but Barts and the London, and the reason you see it on the Shift.MS site is because it links to us on:


Why did you not show the right link??????? You are off my Christmas card list from now on! So much for Christmas Cheer.

Yesterday a post was made on the Blog carrying a link, that I reposted with the link deleted. I did this without reading the link, because it seemed like it could be a computer virus or an advert for some product. Little did I realise that it was probably going to go viral amongst MSers. So I was surprised to see the content of the post. For those of you have not seen it, this is yet another (30 odd page) whinge about the CCSVI conspiracy, sent to MPs etc. (Parlimentarians/US =Senators/Congresspeople) If you read the blog you know the content as VV amongst others has rehearesed it over-and-over and over-and-over again. It seems that there is the Schelling doctrine followed by many. It is a shame therefore that no-one has condensed it down into a few digestible pages, but we have discussed this already!

This time it is how the A's from Cambridge (and Prof G) are in bed with the MS Society and pharma to stop CCSVI from being talked about or perscribed. Prof G and myself are part of this conspiracy. All I can say is get real!

If there have been 30,000 treatments why then do we still not have sufficient placebo-controlled hard evidence? Answer it is not done to standard that provides meaningful information. If it works there is no clinician that would not be happy, so writing to the prime minister with half-baked ideas is just counterproductive. The CCSVI conspiracy has become boring, but we give space for pros and cons. However we all know how destructive these arguments become! The MS Society got fed-up with their Facebook site being highjacked by this endless whittering. It is a "Marmite Story" you seem to either love of loathe it (CCSVI). There is no point in commenting because you receive the abuse as of today and in the past.


The story talks about John Prineas and blah, blah, but as we know John Prineas does not believe in the vascular story, we asked him in response to your comments. It was said "the Bart's drug research team invite to MS Life. Presumably they will take the opportunity, provided by the MS Society, to encourage people with MS to participate in even more futile drugs trials". If the person(s) writing this story had been to one of these events, they would know that the MSers' set the agenda, not the other way round. We are there to answer your questions......RESEARCH BEFORE YOU WRITE.. IT CAUSES LESS OFFENCE THAT WAY!

In addition, you will note that the scientists from "MEET THE SCIENTISTS" are not all from BARTS, even I know that Holland is not London, but based on past experience this will be twisted in the argument to Holland Park (which is in London).

"The MouseDoctor is Professor David Baker who also sits on the MS Society Grant Review, Panel 1, as do Dr Alastair Coles......It's a small autoimmune world in MS drugs research".

OH YOU HAVE OUTED MY COVER.....OUT OF THE CLOSET...I'M GUTTED. I sit on the MS Society Panel as an Expert Experimental Immunologist as does Dr. Coles-A clinical immunologist and neurologist. FUNNY THAT WE ARE ASKED ON TO A PANEL AS INTERNATIONAL EXPERTS TO ASSESS SOMETHING WE KNOW ABOUT........ maybe look at the panel and ask about whether we should have a geneticsts expert, MRI expert, stem cell expert who can give sensible comment on applications on genetics, MRI and stem cells. Maybe wonder if the panel reflects the type of application recieved and the different aspects of the disease..........NO CONSPIRACY............MAYBE A COMMON SENSE APPROACH.

Also remember that each application is assessed by a number of independent experts outside the panel with expertise relevant to grant applications. This is no different for CCSVI or any other subject. Conflicts of interest are transparent and to think the A's from Cambridge are around when something relating to their work is discussed is the wrong perception and the wrong reality.

Prof G and Prof A from Cambridge will probably not be bothered to address the points being made. I will say to readers of the blog that this does not help the cause of the rational CCSVIer in my eyes.

This is Definitely IG11 (Postcode-ZipCode)

So remember, if you email you friends to post abuse it is www.ms-res.org. Unfortunately MPs could take the side of the story, unless it is countered, so why not send your MP this link with the other to give some balance.

23 comments:

  1. In response you this accusation in this post

    Doctor Coles said

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

    All the MS Society and Neurologists want to see is properly controlled studies that show efficacy

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  2. Light blue touch paper and retire quickly!

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  3. To VV's credit, he doesn't accuse you all of being in a conspiracy against MSers

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  4. "To VV's credit, he doesn't accuse you all of being in a conspiracy against MSers"

    If you read the offending letter (and boy does it offend me) you will notice some familiar tropes that VV has posted here ad nauseam. In fact the style bears many similarities to what VV posts but in longer and more indigestible form.
    I have to wonder if he was in any way involved with this letter, if he is then he is exactly accusing us of being involved in a conspiracy against MSers.
    Perhaps he'd care to clarify?

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  5. Could we have another "Guest Post" with Prof. Ebers. Are his comments regarding flawed outcome measures for DMDs, proof against using DMDs? The CCSVI activists certainly think so: http://www.facebook.com/note.php?note_id=159295534099954

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  6. I meant to say another "Guest Post" like the one you did with Prof. Prineas.

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  7. I'm not sure I understand the meaning behind the title of this post but it's a catchphrase used by some on the far right to taunt people of colour when they're being chased by thugs.

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  8. People have brains of their own. No wonder some reach the same conclusions as others.

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  9. I'm not sure I understand the meaning behind the title.

    It is a maidenish and a Matter of life and Death. Check out Sir Bruce Dickinson Ozzfest 2005.

    The "colour" is a regimental flag like the trooping of the colour that happens on the Queens Birthday.
    Nothing intended about thugs

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  10. Great Minds think alike!

    The Stepford Wives thought alike....

    but happy to hear that you were not part of this nonsense.

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  11. Colours Don't Run

    Excuse the language but provocation can sometimes result in curt responses

    http://www.youtube.com/watch?v=vtPBIqa-22c

    This has nothing to do with MS

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  12. Re familiar tropes: it's all familiar from the parallel universe on Facebook and elsewhere. What's new is the mentions of your team

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  13. George Ebers is a lone voice; and very few people agree with the conclusions of his analysis. Other data suggest short-term EDSS outcomes do predict long-term disability. He is probably correct though that we should be doing 5 year studies; this would be very expensive. And would MSers be prepared to wait that long? Can you imagine being on a placebo for 5 years?

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  14. You are probably right and also the question of whether his views change in the age of high active agents.

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  15. What's new is the mentions of your team

    You are right although our friend -Joan did write some nonsense on Prof G previously (p.s. Prof G did not like the her CD that we bought for him).

    However the folks at Shift MS who had nothing to do with the content on the post in the pdf circular get the blame.

    I suppose at least the PM knows about Shift MS

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  16. Some people have said

    "What I can’t go along with is the notion that these dedicated medical professionals want anything other than for us to be treated properly or better still cured. A conspiracy too far methinks".

    OF COURSE WE WANT WORLD PEACE AS WELL

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  17. Great to see you guys so rattled by this letter.
    Obviously it has touched several raw nerves, as it should.
    As for the need for evidence based results i find it perplexing how the people who have had the treatment are constantly ignored and pushed aside by our fine science experts who themselves tend to quote only the 'facts' as they want it to be seen... http://www.youtube.com/watch?v=XuTpTVHH9z4 Dr coles stating MS IS an auto immune problem.

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  18. "Great to see you guys so rattled" is so adversarial, surely we both want the same thing to do something about MS?


    I would say irritated for a short time..Sure. Yesterday we (MDs) decided to take the bait for a change....our choice. G could not be bothered

    Rattled by the letter...I would say absolute rubbish-It is FULL OF MUSHROOM FOOD. You are so far off the mark about our emotions.


    Whilst I respect you choice that you may of had CCSVI, without adequate data collection and follow up, the exercise has been futile.

    So if it works for you great, but we know for others no real effect So what is the breakdown of work verses no work and them put the placebo effect into the mix-result BAD SCIENCE

    Even if the autoimmune hypothesis is rubbish too (there are plenty of scientists that think it is mushroom food), you have provided no hard evidence to show that the CCSVI treatment works so no reason to make the treatment available.

    Your energies are misplaced

    This is the flaw in the approach. Monstering your opponent does not make your view right!!!! In fact it does your cause no favours.

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  19. if it doesnt bother you why do posts MOUSE. Answer is youre worried whats going to happen next COURTS will decide and many will be watched now in NHS atlast by watchdogs

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  20. straight jackets for the ones who think its a conspiracy !!

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  21. I don't work in the NHS so why would courts and the NHS worry me.

    Please read the information available

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  22. 'people who have had the treatment are constantly ignored' -

    Testimonials are not evidence. The formal trials will produce some evidence.

    Blogs and youtube also have lots of stories from people who say 'Sadly it didn't work for me but I still 100% believe in CCSVI'.

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  23. "Great to see you guys so rattled by this letter."

    Not rattled but saddened that some can be so misguided. It's quite amusing trying to engage with you guys, in fact very similar when trying to explain the facts to MMR vaccine/autism truthers. perhaps you are from the same constituency?

    "Obviously it has touched several raw nerves, as it should."

    How would you feel if you're reputation (and that of your colleagues is defamed?

    As to the last point, anecdotal evidence is no evidence" no matter how many youtube testimonials you quote.

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