Letter to Local NMSS Chapter

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.
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Letter to Local NMSS Chapter

Post by rssugg » Wed Jun 30, 2010 9:22 am

Share freely with staff and board of directors of your local NMSS chapter (change the state though!)

To Whom It May Concern,

I feel that I am a pretty lucky guy – I have a beautiful wife, healthy newborn daughter, a great career, and I have MS. Why am I lucky to have MS you might ask? The reason is that there is now treatment – a treatment that does not involve drugs and has a higher percentage rate of actually treating the disease.

Fortunately, the NMSS and its local chapters encourage folks, with and without MS, to become involved by stating “Thousands of individuals nationwide are joining a grassroots movement of MS activism”. I cannot agree more – so I am writing to let you know I am taking up the call and joining the TENS of THOUSANDS of folks that are becoming activists for MS treatment through the liberation procedure.

I encourage you to take some time to reflect on the research and make your own connections. I am not going to speak out against drug companies, profits, or conspiracy theories in this letter. I will point out that venous abnormalities have been studied thoroughly in MS for decades and the research papers are easy to obtain and the technology now exists to identify and correct the venous cause of MS.

Last week I called your office to request a referral to doctors that might be performing the liberation treatment in NC, but I was immediately transferred to the NMSS national hotline. I was a little hot at first, but the lady on the line assured me that my neurologist should be able to assist with this information. I must say, it was good that the NMSS is trying to work to assist folks in obtaining this procedure although they don’t support the facts already associated with this treatment.

Unfortunately, we need to shift our paradigm toward researching and treating this issue. We also need to shift our paradigm away from the focus upon the neurology community, and focus on the interventional radiologist and other practitioners who can assist in identifying the measures that need to be taken to alleviate the burden of MS. The great news is that the instruments, protocols, and methods have already been developed to perform a liberation procedure and they are being used every day for other, similar venous issues.

The North Carolina MS community needs your support to begin contacting professionals across our great state to encourage them to take up the liberation procedure and begin healing our sick. We have the greatest teaching hospitals in the world located right here in NC, and they should know that you support them and that organizations such as yours should provide them with the encouragement and tools they need.

I have to say that I have a hard time supporting NMSS until CCSVI is brought to the forefront. The treatment has been proven by researchers and doctors and has been brought to the light of day by activists and people with MS. I will continue to bring CCSVI to the afflicted, to the caregivers, and to the doctors until this simple, safe, and affordable procedure is brought to the people who need it most. As you know, some folks cannot wait for trails to prove that an already accepted procedure is safe and effective.

MS stops people from moving, but it appears the only people not moving are the NMSS. Will you be willing to move with us?

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