This Is MS Multiple Sclerosis Knowledge & Support Community

Dovechick wrote:The Website in the making www.ccsvi.co.uk homepage now has a link to the petition...

God you guys are good!

colmmc.

CCSVI UK

Spotted "dispite" on the introductory page. Should be "despite".

James

It's not my website so will have to leave it to the website designer to put right, I'm not about to tell him how to spell after he has been kind enough to put the petition on the home page for us.

I'm sure he won't be offended. If you pass me his email address I'll mention it diplomatically.

I've linked to the website from the facebook group.

Please join the group even if you don't want to actively support, even your presence makes a difference!

Have received information from my contact at Esaote, the doppler equipment manufacturers and this is what he said in reply to my question about training costs and allowing their company name to become public knowledge.

Having spoken with my Italian colleagues I have no objection to the company name being associated with the procedure. The system, which includes initial and on-going training, will cost around £50k.
Meanwhile I've had a contact, through Twitter, from Dr Klaus Schmierer, Clinical Senior Lecturer in Neuroimmunology Barts and The London. He wanted to know when the system would be launched. I'm not sure of his motive as he has already rubbished the procedure.
Regards
Lee

Links:
ESAOTE http://tinyurl.com/4kxkmv
FACEBOOK UK PAGE http://www.facebook.com/?ref=home#/grou ... 952&ref=nf

BALSABOY I'm not in direct contact with him... I communicate with his mother. I would prefer to leave things alone for now. If this does not get sorted by the time the website goes live I will contact her again.

LR1234

Sorry for taking so long to reply to your post, I almost missed it.
I just wanted to wish you all the best for your trip. I'll update you with My Mum's progress as soon as I hear anything.

Good Luck.

Morning All,

My brother has managed to find out that in Birmingham there is the facility for transcranial dopplers - is this what we need? he got the following email from a contact of his...

"There is a large experienced vascular unit in Sandwell and City Hospitals Birmingham (Mr. Silverman) and Solihull (Professor Bradbury) which have the facility for transcranial Doppler."

Before I got this I already tried, unsuccessfully to persuade Professor Bradbury. Anyone interested in trying their charm on these guys?

I will see if my brother can find out other places across the country that have the facility and we can include them on out hit list! unless anyone already has that information?

Thanks, Skallywags.

Wow Michelle, you don't hang about...

50K is obviously alot of money and must include the machine itself.

I'm wondering about what it costs to train users of existing machines to recalibrate and diagnose results. I've heard (I think in CTV reports) that it requires 3 days of training, do we know where this training can be sourced?

Interest comment about Dr Klaus Schmierer, thoughts on this?

Bodgeit, not sure what that means either. It does seem like a lot of money. From what I understand existing machine can be recalibrated. The training is taking place in Italy at the moment. But I know that Doctor Simka in Poland has passed on his expertise to others.
Maybe I should send Lee's (MD of Esaote UK) email address and you can communicate with him directly. I have told him about the pressure group from TIMS, so just introduce yourself as being part of that. I think he actually is keen to get people involved because it makes his job easier.

Dr Klaus Schmierer is involved with the UK MS Society and is particularly interested in MRIs and the development of the technology used to diagnose MS. As we know the MS society has changed its attitude recently so they may have asked him to investigate. Only conjecture though.

SkallyWags wrote:Morning All,

My brother has managed to find out that in Birmingham there is the facility for transcranial dopplers - is this what we need? he got the following email from a contact of his...

"There is a large experienced vascular unit in Sandwell and City Hospitals Birmingham (Mr. Silverman) and Solihull (Professor Bradbury) which have the facility for transcranial Doppler."

Before I got this I already tried, unsuccessfully to persuade Professor Bradbury. Anyone interested in trying their charm on these guys?

I will see if my brother can find out other places across the country that have the facility and we can include them on out hit list! unless anyone already has that information?

Thanks, Skallywags.

I've got a feeling that transcranial means through the scull and the dopplers necessary to diagnose CCSVI do not need to see through the skull, as the veins that are constricted are in the neck or chest.
But that is not to say that these people could not do the doppler tests with some training.

Hi BodgeIT,

Thanks for posting the additional information on the MSRC's MS Discussion | Boards, I have added the e-petition on the MSRC's Online e-petitions you may wish to sign Page - http://www.msrc.co.uk/index.cfm?fuseact ... ageid=2668.

squiffy2 wrote:Hi BodgeIT,

Thanks for posting the additional information on the MSRC's MS Discussion | Boards, I have added the e-petition on the MSRC's Online e-petitions you may wish to sign Page - http://www.msrc.co.uk/index.cfm?fuseact ... ageid=2668.

Thanks Squiffy, that is great. Unfortunately Ella did not do well on the Best Bet Diet so won't be adding my name to that.

SkallyWags
Have you seen the latest MSRC page for CCSVI...
might help you with the pack:
http://www.msrc.co.uk/index.cfm?fuseact ... ageid=2944

blimey! there is alot of information - my problem will be working out how just a few documents could give a full and persuasive picture. I havent read nearly as many documents as i will need to, but I am thinking we will need to include:
- One medical publication on Dr Zamboni's work
- Details of the other clinical trials that are going ahead
- The list of important people in support of the CCSVI link with MS (there is a forum here that lists all the medical professionals)
- The CCSVI facebook page lists a timeline of research that - although it didnt identify ccsvi, supports the theory.

Please let me know if I am on the right lines. I intend to put a couple of hours into it this evening once the children are in bed.

Also, Michele - I think you are right about the 'transcranial doppler' ;0( I will double check tonight though. I managed to dig out my email response from Professor Bradbury's vascular department:

"Many thanks for your e-mail. I have discussed this with Professor Bradbury. He suggests that you might be better advised to contact a neurologist on this matter as we generally only deal with venous problems in the limbs."

so frustrating.