I suggest a campaign about ...

The demands of people with Multiple Sclerosis are being ignored. It ruins the life of possibly 160,000 in the UK.

MS is a devastating set of symptoms that destroy the lives of sufferers and their family. The number of people affected by these symptoms is not known, there is an estimated figure of about 85,000 in the UK but early results of a survey undertaken under the freedom of information act suggest this might be half of the actual number. Problem is that as no one knows how many people suffer from MS, resources and services are not in place to help.
Another problem is that appeals for treatment and better service for people with MS fall on deaf ears as the problem is not seen as large enough to be politically significant. Take one possible cause of the syndrome for example: Chronic Cerebro-spinal Venous Insufficiency (CCSVI) a venous condition affecting the head and upper torso. It is being diagnosed in between 75% and 90% of people with MS and is easily treated using a safe procedure currently performed in our NHS hospitals daily, yet because of their MS diagnosis people are refused this treatment on the NHS. People who have been treated abroad often recover from their symptoms.
Visit these facebook sites and websites for more information and don't forget to pass on the link to this site to your friends and family, we really need your help.
http://www.facebook.com/ms.ccsvi.uk?ref=ts
http://www.facebook.com/groups/vital.now/
And our websites:
http://www.vital-now.org/
http://www.ms-ccsvi-uk.org/

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    Michele FindlayMichele Findlay shared this idea  ·   ·  Flag idea as inappropriate…  ·  Admin →

    27 comments

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      • cliffordclifford commented  ·   ·  Flag as inappropriate

        its like everything else if it will cost money the government will ignore it as for not being politically significant it will be significant when it comes to paying benefits to the poor people who are suffering this is another situation where we will have to make as much noise as possible to try and get the goverment to unzip the coffers and help people who are suffering but don't hold your breathe

      • Linda RousayLinda Rousay commented  ·   ·  Flag as inappropriate

        The bottom line is that their are multiple causal factors for MS/CCSVI.Though we share similarities we don't have all the answers.I do believe, however that there are some who are much closer to the truth than they are willing to stake their reputations on. Somewhere among the hype, the hints and the sensationalists lies the truth.

      • Michele FindlayMichele Findlay commented  ·   ·  Flag as inappropriate

        As far as I know aspartame does not cause the venous lesions seen in post mortem studies, whereas CCSVI does cause such lesions. So regardless of the demerits of aspartame in food and drink it cannot be said that CCSVI is not significant in MS. The pwMS that I know are very aware of the benefits and dangers of what they consume.

      • AnonymousAnonymous commented  ·   ·  Flag as inappropriate

        You know most people with MS actually have ASPARTAME poisoning and don't even know it. This is of course not true for all, but the symptoms of aspartame poising and MS are very similar. Maybe a campaign to ban coke and diet products would be better eh, as this is where this poison lurks most. http://rense.com/general53/ms.htm

      • Jenny HarrodJenny Harrod commented  ·   ·  Flag as inappropriate

        We are often victimised as the condition can be so variable and quite often we look like there is nothing wrong with us or even worse as if we are drunk. Don't think there are any MP's with MS, although would they admit it if they had as they would probably be moved into a more appropriate area like I was.

      • AnonymousAnonymous commented  ·   ·  Flag as inappropriate

        I'm tired of 'getting on with it'. It would appear that animals are treated better than us inconvenient MS sufferers. That's how it feels anyway. Bad day today, but I can vouch for the impact of these symptoms. I'm a shadow of my former self The drugs are awful. There isn't enough support. It's possible that this small operation would give me a new lease of life. There's a risk - but if I'm prepared to take it, shouldn't the NHS? GP care? My GP broke the news that I had MS whilst faxing with one hand and trying to sort his calendar with the other. I then had no other contact for 10 years! It was only 2 years ago that they decided to assign me to an MS nurse and start treatment. It's shocking. If health workers can't be bothered, what hope do we have in changing public perception?

      • AnonymousAnonymous commented  ·   ·  Flag as inappropriate

        Also examine the links between MS and a number of food additives.

        Also look at the links between MS and some combinations of food additives being used in separate products. Because they are used in separate products the effects of both short and long term usage are not fully explored.

      • Michele FindlayMichele Findlay commented  ·   ·  Flag as inappropriate

        Joanne thanks for your comment... It continues to frustrate me that people who should be supporting us are 'looking' at CCSVI with hands over eyes and ears. Is it ignorance, self interest or financial insecurity... one thing for sure it is not science.

      • Joanne HepburnJoanne Hepburn commented  ·   ·  Flag as inappropriate

        As a relativity new sufferer of Multiple Sclerosis I am shocked and appalled at society's new found distaste towards anything they do not understand or wish to comprehend. I am 27 and look fairly regular until I trip or fall in public (more often than I would like but it happens) no-one ever offers aid. Ignorance or arrogance?

      • TeresaTeresa commented  ·   ·  Flag as inappropriate

        38 degrees I have signed many of your petitions when you have asked for my help, please get this out to as many people as possible this is didcrimination however the wrap it up, we shouldn't have to travel abroad for treatment patents without MS get on the NHS, and come home to NO follow up

      • AnonymousAnonymous commented  ·   ·  Flag as inappropriate

        This is a terrible disease and sometimes because it is not evident the person has it, it is ignored.
        No help is available unless they are actually suffering a relapse! Any treatment should be given to the
        unfortunate people who suffer, mostly in silence as they know they just have to get on with it.

      • PennyPenny commented  ·   ·  Flag as inappropriate

        I really want to see this procedure recognized in the UK. I live in Canada, born in England and treated for CCSVI in the USA. It has helped me greatly and should be available to all who have MS (and other neurological diseases). Correct blood flow through the brain is a vital need for every human.

      • AnonymousAnonymous commented  ·   ·  Flag as inappropriate

        This cause is long time overdue and vital. As someone caught up in this confusing state of affairs, it is becoming increasingly apparent that this seems to be an unfortunate clash between traditional medical professionals and innovative medical pioneers and, an inability to deal with this from so called called 'supportive' organisations - I am delighted to vote for this vital cause and happy to be a part of upgrading the approach to understanding and improving life quality for MS'ers and families. Let's waste no more time on campaigning for the collation of accurate statistics, number of different presentations and similarites between them, cross over symptoms with other chronic conditions such as stroke, parkinsons, ME, CFS, etc and let's get the professionals to work together to forge a clear way ahead for newly diagnosed and long term sufferers alike. Time is of the essence....put this cause on the map, once and for ALL!

      • Kevin CampbellKevin Campbell commented  ·   ·  Flag as inappropriate

        To David’s Wife – you have hit the nail on the head. Your contribution makes us weep with frustration and anger. How can we circulate this information and involve more people in our cause? If they read your post they might understand what this is all about.
        Sometimes we get a ray of sunshine coming our way. We shed tears of joy when we read the post by patient advocate Linda Rousey whose ‘old neurologist’ had to concede: “I have never seen this level of improvement in an MS patient. After reading the doctor notes of successive physicians, and her severe level of disability two years ago, I concede that this dimension into the causal factors of MS demands more consideration." We really don’t need to add anything do we?
        Read the whole story here:
        http://www.facebook.com/notes/linda-rousay/sometimes-youre-the-windshield-sometimes-youre-the-fly/10150555606184598

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