Oh well, if one of the lay people on here thinks that the procedure is very low risk then never mind the medical professionals we should all be queueing up for it
It seems to be a sad fact of modern life that some people trust individual stories posted on forums and youtube more than properly conducted scientific studies.
Desperate people + profiteers + modern media + the placebo effect = a terrible waste of money + a testament to the resilence of hope and denial over truth
I have to say I think it is a sad fact of life some people still believe that clinical trials are primarily about science when there is so much evidence they are primarily about drug marketing.
Start with the 2005 health committee report ‘The Influence of the Pharmaceutical Industry’ then move on to the many books written by doctors on the subject.
The problem then comes as to where you do get reliable information. That is the difficult issue to which I do not see a perfect answer, but it does explain why people rely so much on personal experience of others.
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Whatever the limitations of clinical trials, they are the best we have.
Relying on the personal experience of other is at best foolish and at worst downright dangerous for at least the following reasons:
- how do you know that what anybody posts on the Internet is true?
- how do you know that the effect that they are reporting is not due to a combination of circumstances that are peculiar to them?
By all means listen to other people but don’t rely on their evidence to make decisions.
I agree there are problems once the science becomes corrupted by money and you do not know which if any clinical trials are based on science.
The other problem is that many things which may be of benefit do not get tested formally because there is no profit motif to recover testing costs from. CCSVI was I understand first suggested as related to MS in 1896 for instance.
My personal opinion is the best advise on any subject comes from practitioners experienced in treating patients with any particular therapy, which is why I quoted my opinion of what was said at the CCSVI/ LDN conference about CCSVI.
We need to get science back as the lead in medicine not profit. However I do not see that as likely anytime soon so until that happens we will be left in a less than satisfactory situation regarding making evidence based decisions on treatments for anything.
Hi Dee & welcome
Getting back to your original question regarding CCSVI - you’ll have noticed that there are varying opinions on the subject.
Personally I’m not yet convinced. In my view it still requires a lot more research and is definitely not an option that I’d consider at this stage. At the end of the day no one yet knows what actually causes ms but research is ongoing and hopefully at some point they’ll come up with something!
Until then I think adopting the more conventional approach is probably the best way to go - dmd’s and medications to help with ongoing symptoms. Ms nurses have a lot of knowledge and can open doors for you to all sorts of medications help & support so it’d definitely be worthwhile finding out if there’s one attached to the neurology dept. at your hospital. Give them a call, or maybe your GP can find out for you?
As a few others have already said, you can’t necessarily believe what is posted on the internet - there are a lot of scoundrels out there who are happy to make a fast buck out of the potentially vulnerable especially those conditions & illnesses which not a lot is known about - like MS. It’s best to stick with the official websites such as this one and the MS trust for example - they offer up a lot of information.
Whatever you do is of course entirely your choice, just ensure that you have as much information as possible before embarking on anything - particularly any radical treatments.
Good luck
Debbie xx
What follows is the text of a letter that I sent for possible publication in MS Matters. It wasn’t published.
CCSVI
I want to dispute the MS Society’s position on this treatment, which is that it should ‘only take place within a properly controlled clinical trial’. I am 64 and suffer from the gently downhill version of MS characteristic of many people in whom the condition starts in later life – in my case it was diagnosed in 1993.
The CCSVI procedure is very safe and well established for other conditions. The only significant risk to individuals if it is carried out through the Essential Health Clinic in Glasgow is the loss of £8000. The actual operation takes place in Edinburgh, is done under local anaesthetic, and lasts a couple of hours. The team involved are taking a careful survey of patient conditions before and after the procedure. This is not a properly controlled trial, but is surely quite useful evidence. In my case the results of the procedure were almost immediate and quite dramatic. My left hand started working as well as it had done about eight years ago. My ability to stand using a stand aid is also very much better. Prior to the treatment I could just about stand to transfer; following it I am managing so well that I am investigating the possibility of walking at least a few steps. I have tried an assortment of unorthodox treatments – homoeopathy, hyperbaric oxygen, testing for dental mercury poisoning, weird reflexology allergy testing – and fully agree with the Society’s view that they don’t work, at least not for me.
The Essential Health Clinic are very honest about the prospects of patients. They say that the results very uneven and that they are looking for patterns.
So far as I can see, the only drawback of the procedure is the financial one. This is the first thing in 18 years that has actually reversed my MS as opposed to helping with symptoms. I can understand doctors wanting rigorous scientific proof, and am heartened by the prospect that remeyelination from stem cells may be available in 10 or 15 years, but realistically this isn’t going to benefit me for a significant part of my life. It would seem that the treatment can effectively pretty much cure MS for at least some sufferers early after diagnosis. My MS has been relatively cheap because I have been able to carry on working, but I calculate that it has cost the state at least £110,000. Many sufferers have to stop working and become dependent on benefits rather than taxpayers.
My conclusion, therefore, is that I would recommend people with £8000 to spare to give the procedure a go. I also think that it should be available on the NHS. It does not have to work very well in order to achieve considerable financial benefits over and above the obvious possibilities for human health and happiness.
Prof Mark Cowling
Middlesbrough
Dear Professor Cowling,
You seem to have forgotten a fundamental rule of good science: a representative sample.
Your sincerely,
Dr Karen MacRae.
I had assumed that you had stated your qualifications because they were of relevance to CCSVI.
As you work in cirminology, I am not aware of any reason why this makes you an expert on CCSVI.
Dear Dr Karen MacRae
What you seem to forget is that a large sample of people with MS have has CCSVI treated, what is missing is independent analysis of the results of the benefits derived by those people. That is what forces people to make up their minds about such procedures based on less than ideal evidence.
Never mind since Prof. Mark Cowling has only 1 year to wait before he is offered flu vaccine for which the Cochran collaboration see no evidence base, so at least the NHS will fund that non evidence based treatment.
Lets hope if he decides to do that then this Pub Med report is wrong.
http://www.ncbi.nlm.nih.gov/pubmed/20171793
So far as I can see clinical trials are like statistics you can prove anything you want to, it all in the protocol selected for the trial.
What the clinical trials prove to date about CCSVI equally depends which trial you quote which to me suggests yet again clinical trials are neither basis to either accept it or reject it. Never mind there will soon be sufficient trails to do a meta analysis that proves it is of no help and all those who find it has been were just reacting to placebo effect.
X
(Still learning to spell my name)
I’ve no idea what you are trying to say here, but there’s nothing unusual about that.
Incidentally I read your article on the Purbeck website, the fact that the MS Society refused to publish your first offering says it all.
I’ve no idea what you are trying to say here, but there’s nothing unusual about that.
Incidentally I read your article on the Purbeck website, the fact that the MS Society refused to publish your first offering says it all.
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Sorry I will make it simpler to try to explain it to you.
Western medicine make great claims that what it offers is evidence based. When you look into it that is by no means true in many cases.
I did not write the article you refer to.
Well, it’s better than your normal attempts David, but it’s still wide of the mark.
I am fully aware of the thousands of “liberation” procedures already undertaken. I am also fully aware of the lack of evidence that the procedure does anything for MS or is even related to MS. But this was not the point I was making in my reply to Prof Cowling. In his post, he cites his own personal experience as evidence that the “liberation” procedure works. As I stated in my reply to him, this is not a representative sample.
The most up to date research on CCSVI was discussed extensively at the ECTRIMS conference. There is a summary here: http://www.msrc.co.uk/index.cfm/fuseaction/show/pageid/2479. The title, "Little support found for vascular MS theory at ECTRIMS," says it all in my opinion.
The most damning thing of all about CCSVI? Prof Zamboni, the “creator” of CCSVI, says that no one should have the procedure done until clinical trials have been completed. I doubt even you can argue that Prof Zamboni’s recommendation carries infinitely more weight than a professor of criminology!
The stuff on vaccines you mention? Irrelevant. I do find your inconsistency with regard to scientific evidence amusing though.
Unfortunately ECTIMS is primarily based on the neurological view and CCSVI is a vascular surgery issue. It is now a recognised condition according to various statements on the house of commons web site so why can it not be diagnosed and treated in those who wish that to occur? We would not refuse to treat someone with diabetes just because they happen to have a diagnosis of MS so why do we refuse to treat CCSVI?
Interestingly enough I went to the Dublin LDN/CCSVI conference and a neurologist decided to quote the ECTIMS conference statement about CCSVI. He then refused to answer questions and left the room, I am sure he heard the laughter from the audience as he left. Several of the audience did actually defend their neurologist saying this guy was far from typical of the profession.
Until clinical trials are conducted independently from vested interests I see them as a totally unreliable means of rejecting or accepting any treatment. The problem is what is a reliably method? The other problem is things like LDN will never get tested when there is no profit motive, so again evidence based medicine has little to say for or against that. Apart that is from employing a parrot to say it is not licensed for MS of course.
Obviously flu vaccine is not relevant to CCSVI. I do see it as very relevant to the general picture however when the NHS spends a load of money on a procedure that someone with the reputation of the Cochran collaboration says there is no evidence for, then refuses to fund procedures like CCSVI which people actually want. My NHS -My choice they say. Rather like Henry Ford you can have any colour you want providing it’s black.
As for the pub med reference well if you search their database you will see reports that suggest vaccines may be partly responsible for causing MS, are safe for people for people with MS and potentially dangerous for MS. To say the least not a clear picture. Decide what you want to believe and quote accordingly.
I always try to see what the outcomes of any procedure are to make decisions on. I would suggest that’s what we really want independently measured with CCSVI. I too have the greatest faith in the Essential Health Clinic but in every case it is important that results are independently scrutinised.
Truth? Here is my story, take it or leave it but it is the truth. I am a 49 yo male diagnosed in March 2011 with PPMS. Amongst other symptoms, my balance was completely shot. Some days I couldnt stand.
I went to Bruges in May and had CCSVI and I am so much better.
The procedure worked for me.
Good for you, thanks for your report
“It [CCSVI] is now a recognised condition” This cuts right to the heart of my problem with the CCSVI/MS brigade. CCSVI appears to occur in people with lots of different conditions. CCSVI appears to occur in people who have no other conditions, i.e. are healthy. Many people with MS do not have CCSVI. CCSVI and MS are therefore different things. Having treatment for CCSVI may improve symptoms caused by CCSVI, but it will not change MS.
“I went to the Dublin LDN/CCSVI conference” When I use the word “conference”, I mean a meeting at which the very latest, cutting edge research is presented and discussed by internationally recognised scientists and professionals. I do not mean a get together of like minded, blinkered lay people with a few of their idols in attendance. Comparing a LDN/CCSVI conference to ECTRIMS is like comparing a Robin Reliant to a Rolls Royce!
“Until clinical trials are conducted independently from vested interests” I find it extraordinary that you happily believe data gathered by the Essential Health Clinic and the like, but choose to disbelieve research conducted by internationally recognised scientists. If anyone has a vested interest it is the former. Incidentally, have you actually checked to see who is funding CCSVI research?
“The problem is what is a reliably method?” Research Methods is a core discipline in science. All scientists are taught to understand what is and is not good practice. Further study and experience deepens this understanding. What is and is not a reliable method is well understood. By scientists at least.
“someone with the reputation of the Cochran collaboration says there is no evidence for” What a wonderful demonstration of your selective use of findings. The Cochran Collaboration apply Research Methods techniques to evaluate evidence. What do you think their conclusion would be with regard to CCSVI? But would you even choose to believe it, if it disagreed with your belief?
“refuses to fund procedures like CCSVI which people actually want” Well thank heavens for that! If the NHS funded every crack pot scheme that some MSers have bought into over the years, there would be little money left to fund the procedures and treatments that actually work!
“Decide what you want to believe and quote accordingly.” I refer you to my point three above. Understanding good practice as well as detailed, educated and experienced analysis of methods, allows scientists to understand what is and what is not believable. Being in print is not a guarantee of quality.
“I always try to see what the outcomes of any procedure are to make decisions on. I would suggest that’s what we really want independently measured with CCSVI.” You said it. Now do it! Outcomes presented at “conferences” like the one you attended in Dublin and posted on youtube, blogs and forums are not controlled, reliable or generalisable. If you want to know what the outcome of CCSVI treatment is, then you need to wait for the results of RCTs (randomised controlled trials) - only then will you be able to make an informed judgement.
Interesting you should mention the web you tube and the like.
I recently watched a programme on TV about vaccine safety and that was the one point that I thought came out of it. One of the pro vaccine ‘experts’ voiced the concern that so many people trusted you tube more that the CDC - FDA etc.
That is the problem we don’t trust officialdom. That was one of the key things that came out of Richard Hammond’s programme about MMR, a survey that suggested only one percent of us trust officialdom.
The health committee report the Influence of the Pharmaceutical Industry should have been taken seriously and not just filled because it said things that might effect our pharmaceutical industry. Then perhaps it would not be quoted as an industry with a poor reputation.
http://www.publications.parliament.uk/pa/cm200405/cmselect/cmhealth/42/42.pdf
Since I believe in looking at the “evidence” that other people base their arguments on, I looked at that particular Cochrane Summary - and then went on to read the Abstract. Since the report was published in 2009, it was based on the 2008 innoculation season (or earlier). To me, that says it is three years out of date.
Also based on the 2008 season is this work
A randomized study (by Monto et al 
[137 KB, 8 pages]) looking at the 2007-2008 influenza season found trivalent inactivated vaccine (flu shot) protected 7 out of 10 people from influenza illness.
To me, that sounds very much like a 70% success rate.
Of course, I have not read the Monto et al report in full, so I cannot comment on their methodology.
Dr Geoffrey N Hone
Attention Karen don’t let that plonker David get at ya. Even his wife; the PWMS does not want the treatment he suggests; she obviously thinks he’s a dummy as well.
Strange thing Zamboni’s wife (the person who started the ‘liberation treatment’); does anyone know how she is today?
Shame a good treatment; LDN; has got mixed up with the ‘liberation treatment.’
George