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.