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Reply by the multiple sclerosis research blogspot to the "open letter" posted on here recently

The “open letter” posted recently on here (and elsewhere) by CCSVI supporters was partially directed at neurologists and researchers working at Barts who do the excellent multiple sclerosis research blogspot.

They weren’t included in the cc list, but did see it and have replied to the allegations against them on their website.

Since some of you read the letter, I thought it was only right that you should have the opportunity to read one of the responses too.

http://multiple-sclerosis-research.blogspot.co.uk/2012/03/these-colours-dont-run.html

Karen x

Well done Karen for posting this and as one person on the blog has said

“Light blue touch paper and retire quickly!” Lol

John x

Thanks for posting Karen and I will pop back and take a look at the comments.

I haven’t closed my mind to the idea that CCSVI might be part of the solution, but with several large trials running am happy to wait for a definitive conclusion. 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.

I have not read this letter yet as it was removed quickly; why it was removed is beyond me. I must however try and make the CCSVI brigade realise if it is another swipe at these so called ‘big pharma companies’ what is it achieving; only placating a few disgruntled people on here.

It is the system we have; yes I can confirm in my time as a Trustee small donations were made at branch level by drug companies. No favours were given in return; do you expect the money; with no strings attached to be refused.

If the letter talks about individuals receiving backhanders and conspiracy theories; I doubt it very much. As with the Levison enquiry; no one is above the Law. If anyone does do it; which in the real world happens they will be caught.

Bit silly to blame drug companies; it is a dog eat dog system. Rests on two principals; not what you know but who you know and everyone has a price. Not nice but s**t happens; glad I’m out of the rat race.

George

Thanks, Karen

That was a useful and RATIONAL read. I must admit that I couldn’t be bothered to read the original letter, it was too long and had an air about it of lunacy.

Well said!

Alison

x

What got me about the original “letter” was one statement to the effect that:

“GILENYA HAS KILLED 11 PEOPLE”

but did not mention the deaths that have been attributed to CCSVI.

From what I have seen, in either case, most of the deaths could be explained by other causes. In each case there were maybe one or two that could possibly have been related to the drug or the procedure - but it was totally unbalanced. Come to think of it, “unbalanced” might be relevant here.

Geoff

Another interesting CCSVI article posted on blogspot…

http://multiple-sclerosis-research.blogspot.com.au/2012/03/ccsvi-continues-to-trend-downwards.html?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+blogspot%2FWvYVL+%28Multiple+Sclerosis+Research%29

Belinda

In some ways, one could point to the similarity with the current PIP breast implant problem.

CCSVI is a procedure carried out by private clinics. Those wanting the procedure are told that it “May” have to be repeated. The exception (AFAIK) is a clinic in Bruges, who say that their high pressure balloon venoplasty is a “once only” treatment “unlike all the others”.

The position with the PIP implants is that the private clinics who carried out most of the implant procedures - and effectively provided a product that was not fit for purpose - now say that they have no funds to remove the unsafe implants.
Do any of the CCSVI providers offer any warranty that their procedure WILL work?
And, I have no doubt, if it does not, then they will produce a signed consent form that has been carefully drafted by a good lawyer to make quite sure that the clinic is at no financial risk whatsoever.

Caveat Emptor applies to more than buying a used car …

Geoff

Thanks for the replies. Sorry, I’ve been remiss in not answering you all.

I think the letter may have been removed because it wasn’t so much a letter as a really long, very biased and aggressive document (Geoff’s comment is one example of the bias) that basically attacked the MSS, lots of eminent neurologists and researchers, pharmaceutical companies and others, suggesting that they were deliberately stopping people from getting treatment for some nefarious reason. It was also very un-MSer-friendly so a lot of people on here would have struggled to read it. I wouldn’t be surprised if it contained several breaches of the libel laws too actually!

As whammel said, there are trials going on already; waiting for the results seems eminently sensible. And I completely agree, the idea that neurologists etc don’t want us to be well is a conspiracy theory way too far!

I wonder if that’s one of the reasons that interest in the theory is waning (Belinda’s link)?

Karen x

Thanks for posting this, interesting reading indeed!