A big thank you to JohnAm, Asher, Inge67 etc for the info on the Dutch study. I am discussing CCSVI with my local MS team (which is a significant group). Below is an extract from a draft letter so you can see how I used the data supplied. If there are any mistakes in my draft please let me know.
Thanks and regards,
I am curious to understand why the MS Neurology team is placing such an emphasis on the 'Dutch Study'. The Amsterdam VU Medical Centre website says that only 20 patients and controls are participating in the study. I understand from Dutch colleagues that the study has enrolled new MS patients and is likely to report at the end of April or in May. The study is using Magnetic Resonance Venography rather than the gold standard for diagnosis of CCSVI, which is Selective Venography (SV) described by Hojnacki D et al. I suggest that the small size of the study and diagnosis method will leave the Dutch study open to criticism, whatever its findings may be.
My personal analysis of CCSVI leads me to await the Buffalo Neuroimaging Analysis Center (BNAC) study results. The press release indicate the large size of the study in Buffalo, New York, USA
http://www.buffalo.edu/news/fast-execut ... =109370009
I understand that preliminary results from BNAC will be announced at the Annual Meeting of the American Academy of Neurology being held in Toronto Canada in April.
I would be very surprised if Oxford University/Oxford Hospitals are not able to offer Colour Doppler Sonography and Selective Venography to private patients in the coming months. Indeed I would find it unethical if anyone with MS was not permitted to have the test described by Menegatti E et al as a private patient in the UK.
Once a diagnosis of CCSVI is known, I would be intrigued if any vascular specialist would recommend to not treat the symptom. Instead insisting that a complete understanding of the reasons for CCSVI be known before the symptom could be treated. Having consulted to the pharmaceutical industry I am very aware of the hurdles which need jumping before such diagnosis and therapy would be offered under the NHS. However, if only a few percent of pwMS could afford private medicine that would represent thousands of Britons.
Ref 1 - Hojnacki D, Zamboni P, Lopez-Soriano A, Galleotti R, Menegatti E,
Weinstock-Guttman B, Schirda C, Magnano C, Malagoni AM, Kennedy C, Bartolomei I, Salvi F, and Zivadinov R: Use of neck magnetic resonance venography, Doppler sonography and selective venography for diagnosis of chronic cerebrospinal venous insufficiency: a pilot study in multiple sclerosis patients and healthy controls.
Int Angiol. 2010 Apr;29(2):127-39. PMID 20351669
Ref 2 - Menegatti E, Genova V, Tessari M, Malagoni AM, Bartolomei I, Zuolo M, Galeotti R, Salvi F, and Zamboni P: The reproducibility of colour Doppler in chronic cerebrospinal venous insufficiency associated with multiple sclerosis.
Int Angiol. 2010 Apr;29(2):121-6. PMID 20351668
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11: