MS-CCSVI-UK
What are we doing?
- To raise UK awareness of CCSVI and it's potential influence on Multiple Sclerosis
To support the commissioning of research in the UK, to prove/disprove Dr Zamboni's hypothesis - Activities:
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We are engaged in a pro-active, coordinated approach to raising awareness of the work of Dr Zamboni, here in the UK.
Our activities include (and are not limited to):- Requesting support from all of the UK MPs
- Contacting all the MS support centres around the country
- Contacting research based Hospitals & Universities
- Sending accurate info and details to all the major national media bases and as many local bases as we can
- Request celebrity involvement as spokes persons, patrons or just to sign the petition and become fans
- We also aim to organise awareness events and do whatever else it takes to cause a more reasoned and empirical debate on CCSVI and its impact on MS
What can you do?
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Become a member:-
If you are unable to offer time/physical support, please become a Facebook member and help us to spread the word by requesting your friends/family do the same.
Actively participate:-
We have a small unelected committee of sorts and need volunteers for all sorts of roles and responsibilities.
If you want to get on board, please visit the vacancy page.Contact your GP:-
For some of us this can be stressful and we don't know where to start... Here is a letter a doctor wrote to patients with chronic diseases, this lets us understand what pressures doctors are under. Do all you can to keep them informed. Is the practice online? Emailing up to date information and research documents, shows them you want to work with them. Here is a letter you could use to preface your information.
Contact your Primary Care Trust:-
The specialist field of Interventional Radiology does not have a very high profile and often GPs are quite unaware of those working in this field or how to contact them. Ask your local PCT for details of any Interventional Radiologists on their staff. Here is a link to a site which lists the PCTs.
Contact your MP:-
Find out their specialist areas of interest, experience or responsibilities, Health and Human Rights (Equality) is what we are particularly interested in. Find out what their contact details are, when they hold their surgeries, how you can make an appointment. Are they canvassing at the moment? We can capitalise on this.
Here is a letter that you might use as a starting point when writing to your MPs.
If there was more than one person in their constituency wanting to talk to them this might impress them with the seriousness of the situation. Basically our argument has got to be that other people with similar conditions are treated for their stenosis, but people with MS symptoms are not. EQUAL treatment for EQUAL problems.There is more information about writing to your MP here.
And here is a list of MPs who have asked health related questions in the Westminster Parliament although some may be due to local issues such as hospital closure etc. There will be others. There are a few MPs who are particularly interested in Multiple Sclerosis who could benefit from information about CCSVI.
Westminster Health Interest MPs Scottish Health Interest MSPs Northern Ireland Health Interest MLAs
All-Party Parliamentary Group for Multiple SclerosisOne thing you can do from the site: They Work for You is create an alert, which means that when an MP, MSP, MLA mentions Multiple Sclerosis or CCSVI you will be sent an email to alert you and you will be able to make a comment if it is appropriate to do so.