ccsvi

@ Raymond, either well off, willing to sacrifice many things, no problems with that, or have good medical insurance

I’m with monkey1666 on this.
There is a lot of disinformation being put about by the proponents of some of the “fringe” treatments for MS. Taking just one DMD - Copaxone - the following is publically available:
In the debate in Parliament last year on LDN, Nia Griffiths MP gave the cost of Copaxone as £60,000 per patient per year.
The latest copy of the BNF that I have (a year earlier) indicated the net cost to the NHS as just £6800 per year. Someone must have given that MP the information.
All the currently prescribed DMDs have gone through the clinical trials process, and the research evidence is available (but you might have to pay for copies of the papers. So what, two of the references offered by Dovechick are to papers that you have to pay for.
Prineas and Barnett: http://www.ncbi.nlm.nih.gov/pubmed/15048884 is actually reporting pathology studies of a very small sample of dead MS victims. Not much blood flow in the neck of a dead person, methinks.
http://radiology.rsna.org/content/262/3/947.abstract has an interesting bit in the abstract (that is free to read, at least) reading
“CCT was not significantly different between patients with MS who had CCSVI and patients with MS who did not (P = .182).”
where CCT is Cerebral Circulation Time. The third reference in that post:
http://bnarchives.yorku.ca/320/03/20111020_forumoncasp_cmp_conference_programme_web.htm is a link to the conference programme for a conference with a strong socialist bias - well you would expect that to be againt big business would you not?

Now I have nothing against the concept of CCSVI. What I do find when doing an Internet search on the subject, is that there are a lot of people making money from doing the so-called “Liberation Treatment” when there is no clinical evidence, from formal trials, that it works. It would be quite easy for a third world clinic (and most of the treatments seem to be done in the former Eastern Bloc, or in India) to achieve a turnover approaching £3 million a year. I was also interested to find that the effect of the treatment did not last, and had to be repeated at roughly 15-18 month intervals (and there is at least one clinic advertising that “Our treatment only needs doing once - unlike all the others”). When the clinical trials are concluded we will all know:
How to actually diagnose CCSVI (and there is a view that Zamboni’s methodology was flawed)
If CCSVI “Liberation” works.
How long the effects last.
If there are any side effects
It could be well worth waiting for - and waiting could well be the prudent thing to do.

Geoff

Thank you DoctorGeoff,

The voice of reason, and sensible ripost. Even, intelligent, and equitable.

Monkey1666

is the group on facebook called “ms friends”? if not, what is it called?

i occasionally have a look in on those groups because i know a couple of people who use them regularly.

many groups get a bit out of hand, i just ignore them.

carole x

to be honest i can’t remember for certain, i think it might be