Hi There, Whilst on the ms society Facebook page I came across an article on an ms treatment study starting in February in Edinburgh. It doesn’t involve drugs it works by working on certain areas in the neck,shoulders and back these areas seem to have tension so therefor its hoped that getting the blood flowing again helps ms. A doctor in Italy I believe has done surgeries to open up the vein and has had some success, although this is not invasive it has had some success with ms patients already. Since I was recently diagnosed with spms I have been looking around to see if there are any trials as let’s be honest they are our only hope right now. I have posted a link to it and shall keep you all posted , We can only try !! http://wwwallmediascotland.com/media-releases/40265/edinburgh-to-host-ms-treatment/study
You could try asking your ms nurse if there are any trials in your local area. Theyre the ones in the know.
thanks for that, CCSVi doesnt seem to come up with the proof its worthwhile as yet.
bren
x
hi
the essential health clinic in glasgow have been doing the doppler scans for a few years now.
the ccsvi procedure is done at the edinburgh clinic.
i had it done in 2010 with brilliant results but after a while all the symptoms came back.
i still feel better now than before the treatment though
its very expensive at £7000
carole x
Sorry folks think I’ve written in wrong!! Ms brain is mush!!! I’m going to take part in this trial they are recruiting people. It costs £220 you pay £110 the first week and the other half the last week if it has helped you , if not you get your money back. They are only asking this towards it as the study is very expensive, I am like most of us very hopeful, xxx
Absolutely NO reputable study ever asks their participants to contribute financially. Not only is it unethical, it completely screws up the data so it would never be publishable - which means that it would never be run by proper researchers.
Therefore the only sensible conclusion is that this is a con. Avoid like the plague!
Im with Rizzo on this AVOID…i am currently on Tysabri in SPMS trial run at the QE in Birmingham but payed for by Biogen. They pay me travel expenses and pay for my lunch when im there.
No reputable study would never expect you to pay,
What is the name of the trial and whos running it?
John
Hi folks, I found the link through the ms society Facebook page, a lady called Alison Fisher posted it on 27thOctober , Margaret
You can find a bit more from the Clinic web-site:
http://www.koreanphysiotherapyclinic.co.uk/
Wonderful place - even seem to have “cured” a cancer victim.
Geoff
Hi Margaret,
Sorry, but finding it on the Facebook page does NOT indicate endorsement by the Society, as far as I know.
I don’t know if those pages are moderated much, or at all, but can’t anyone post pretty much what they like?
Have to agree with Karen and others that NO ethical and properly-conducted trial asks participants to pay. If you are interested in taking part in a genuine trial (at no cost to yourself), then ask your consultant or MS nurse if there is anything locally for which you may be eligible.
Tina
There’s a dot missing from the link to the study in the first post.
Having found the right link , it is clear that the ‘treatment’ is physio Korean style. Surely this cannot be really said to be much similar to CCSVI surgery.
This cannot be proper trial, as there is no control group . Many people would feel better after having massage on a weekly basis for a couple of months, MS or not. A proper trail would have a control group of people with MS having normal massage sessions and a control group having no massage at all.
Hi, I am shocked to read that you say they open up a vein, but it’s not invasive. That’s ridiculous. Any surgery that uses a scapel is invasive.
Janet
The treatment in the original link’s not invasive - it’s just massage. Probably quite pleasent and harmless enough.
The treatment in the original link’s not invasive - it’s just massage. Probably quite pleasent and harmless enough.
£220 for some massage and manipulation?
Blimey. That’s a lot to pay for some shiatsu (finger pressure) style massage. You can get that sort of treatment from any good chiropractor, or osteopath - or at an MS Therapy Centre.
My chiropractor - who helped me enormously, charged £30 per session. She does massage and manipulation and taught me a lot about how my body and joints work at the same time.
I agree with the others. If you are being asked to pay for participating in ths “Trial” it is a con. Somebody is taking advantage of people’s desire to be cured of MS at all costs and are acting very unethically. This is NOT a trial, it is a con.
Stay well clear.
Belinda
I do not agree that our only hope is clinical trials and would tend to agree that a trail would be only a truly valid description if it were funded by other than yourself.
However if you think the treatment being offered is worth experimenting with and feel it offers value for money then why not give it a go.
What I find interesting about the liberation process is that it is starting to offer potential information that may be useful to consider treating it other than the surgical method. Here is a documentary that list one such thing that you could consider although I would be very nervous of attaching the cure word with the information currently available.
http://www.youtube.com/watch?v=EpMvDe8-qsM&feature=share&list=UUR_kFbcwWy1cKLCkmcMf4lg
The other thing you could consider is which many people find stops or slow disease progress.
http://www.ncbi.nlm.nih.gov/pubmed/15694688
None of these represent approved treatment options but basically if you are not being offered an approved treatment option or you are not being offered one you wish to accept then you either do nothing or you try something not approved.
If you do that then it means taking responsibility for you own health and doing your own research.
All non-approved really means is it has not been in anyone’s financial interest to test it, a point made in the documentary above. It does not mean it does not mean the treatment will not work and frankly even if you do take a treatment that is approved it does not necessarily mean it will work for you so whatever you do it is something of an experiment anyway.
One of the things that disturbs me greatly is that western medicine prides itself on being evidence based but in reality very little of it is. Here is a BMJ article on that issue.
http://clinicalevidence.bmj.com/x/set/static/cms/efficacy-categorisations.html
So is it such a bad thing to do your own research and do what you think is right?
A naive and misleading statement. It is also possible that a treatment is not approved because it is dangerous or because it is a rip off.
.
A naive and misleading statement. It is also possible that a treatment is not approved because it is dangerous or because it is a rip off.
I find that offensive in that now a days with widespread fraud in the conducting of clinical trials it is equally likely that a licenced product is dangerous and a rip off.
In general terms not approved mealy means not tested to licencing standards because there is no profit for anyone to do so.
And, like many of us have said here, what this 7 year old paper says is that there is only anecdotal evidence that LDN works at all. But, of course, you knew that.
Do note, readers, that if you want to read the full text of this paper, you will have to take out a subscription to Elsevier Science to do so.
Also note what the abstract says:
“It is crucial that the medical community respond to patient needs and investigate this drug in a clinical trial.”
Which, of course, is precisely what many of us have said here time and time again.
A properly conducted trial is the only way to determine what is the real effect of LDN, what is merely Placebo Effect, and what is just Spontaneous Remission.
Oh, and the final reference offered by david603 is not a BMJ article.
It is a reference to the journal Clinical Evidence, which just happens to be published by the BMJ Group Ltd.
However, it was a nice attempt by david603 at hi-jacking a thread on a rather dubious “trial” of massage as an MS treatment, and turning it into a plug for LDN.
Geoff
Notwithstanding the fact that it is simply not true that 50% of licenced products are dangerous and a rip off, do you actually want us to abandon good practice?
The original post refers to a “study” with no control data, an overt sales pitch which completely undermines the reliability of any results (“all participants will have considerable benefit”), the requirement for participants to actually fund the study (further undermining any results), a very weak and purely speculative theoretical basis that is not even going to be measured in the participants (they claim that gentle massage will help blocked veins, but they aren’t even going to establish if the participants have blocked veins!) and arguably most damning of all: the complete lack of the most fundamental of things, a research question.
This is not a study. It is an affront to research.
It wouldn’t get past a NICE secretary never mind a review panel.
And thank heavens for that.
Btw David, before you launched into your “right to choose” argument, did you actually read about what it was that you were effectively supporting?