"CCSVI can be viewed as an infectious idea, or concept, or meme."

Everyday living
1

Please read the following article published by the MS Research blog from Barts and the London hospital. And if you have time also read the links embedded in the article too.

It is really interesting and discusses how the concept of CCSVI has spread and is now waning in popularity based on Google searches for it. In other words that CCSVI grew in popularity as a medical concept as a meme via the internet rather than as a researched and validated medical condition.

People power does not equate to good medicine. And it is scary how less than orthodox doctors will cash in on people’s desperation for help.

http://multiple-sclerosis-research.blogspot.com.au/2012/10/at-last-ccsvi-epidemic-is-petering-out.html?utm_source=feedburner&utm_medium=email&utm_campaign=Feed:+blogspot/WvYVL+(Multiple+Sclerosis+Research)

Cheers,

Belinda

2

The Internet is a wonderful tool but, like all tools, can be turned to ill use, however unwittingly in this case - by some individuals at least, the profiteers disgust me. When I think of all the money wasted on CCSVI-related research that could have been directed into things that might genuinely cure MS, I could cry :frowning: Karen x

3

Hi Belinda,

I’m talking as a person who for the last 30 years has taken an alternative medicine that has NOT been trialled but has; in my view saved my life. This is the same for the many people who take LDN; the improvements many of these PwMS get can be remarkable.

I am not a drug company knocker but it is interesting to note on the right hand side of the report you supplied (thank you) it asks: IS THE MS DISEASE-MODIFYING THERAPY MARKET IN THE UNITED STATES A CARTEL? Intriguing that 50% so far think it is while 29% think it is not?## ## I have never been nor never will be a proponent of CCSVI as with ACTS and there Pig Stem Cells. The criterion for me is cost; this is where I clash with drug companies.## ## In America; the land of the free; 40 million people cannot get health cover so DMDs cannot be afforded. The last report I saw on TV; when an American interviewer asked ‘a good old boy from deep south’ what do you think of Obama’s health proposals his answer was ‘if they cant afford it let em die.’## ## We are so lucky in the UK to have the NHS; YES; for money it is a black hole but I wonder if we had to pay for DMDs how many could afford them?## ## What a pity Dr. Gilhooly got mixed up in the CCSVI affair. Being one of the main champions of LDN I hope this now does not handicap LDN; tarring with the same brush as CCSVI.## ## George##

4

Karen

I am very interested in your comment about where you think research money should be spent.

MS has been known about for something like 150 years. The auto immune theory has not produced anything particularly good, licenced drugs have largely failed. CCSVI seems still to offer hope for some despite Google trends now being regarded as its end. Is that the best ‘evidence based medicine’ can come up to make assessments of therapies by? - Google search trends.

Why not try people power, just let people do what they want and measure the results. Until some expert knows what MS is caused by and how to fix it so far as I am concern there are no experts just competing therapies and ideas to try - some ‘approved’ some ‘not approved’. Nothing works for everyone anyway.

5

"licenced drugs have largely failed.

What -All of them?

So, people should be allowed to do or take what they want. With ‘Liberation’ at £8000 a go, who’s going to pay for it? Most people have 3 goes at this and then a highly overpriced consultation with a chiropractor and then a very, very, very expensive trip to have braces put on your teeth by Mr Amir.

What about the hype for those dodgy stemcell treatments in Rotterdam in 2006? Believe that?

That scam cost £8000 a go as well. This seems to be the going rate for health scams.

David. You don’t have MS. You have never, ever had a relapse. So respectfully, shut up about the drugs. You don’t know what you are writing about.

I’ll tell you what, if you have a relapse, I’ll have some respect for your views, but as you and I know, I have no respect for you outrageous claims for LDN or criticisms of the DMDs.

*I have no problems with chiropractors. They help with muscle spasms and the damage caused, but no chiropractor that I have encountered costs £250 just to assess someone. This is the price charged at the Essential Health Clinic - where people are at liberty to spend whatever they want, so that kind of proves your point, doesn’t it?

6

A friend told me that you’d posted so I thought, “Yay! A chance for a decent argument to take my mind off my symptoms” and came straight here to see what you’d said.

Do you know what? I cannot be bothered. Your post is so full of out of date opinion and rubbish that it’s simply not worth it.

“just let people do what they want and measure the results”? Good grief :frowning: <<leaves, shaking head and sighing sadly>>

7

Oh! I presume that is code for you do not know where you would have spent the money, so you are only interested in insulting people who have views different to yours.

8

No, just he who thinks they know it all, hates modern medicine, despite the fact that it saves lives and who doesn’t even have MS. Most of us here have MS and wouldn’t dream of telling you what works and what doesn’t in your life.

Have you thought of trying LDN? It seems to be very efficacious in all sorts of maladies, including blinkered vision…

9

No, I meant exactly what I said. I cannot be bothered because your post is so full of out of date opinion and rubbish that it’s simply not worth it.

However, if you really want me to, I will answer your question, but it will only be after you finally answer the 60 questions I asked you on a previous thread. Would you like a link to it? I kept it, just in case…

http://www.mssociety.org.uk/forum/everyday-living/disease-machine-debate-about-evidence-based-medicine

10

As I say you appear only to wish to insult those who disagree with you.

Even the blog quoted has a reply predicting that evidence based medicine will go the way of the banking industry because of the conduct of pharma. (Gavin Glovonnoni)

All is not well with evidence based medicine - it is going down under the weight of its own lies.

http://www.independent.co.uk/life-style/health-and-families/health-news/drug-giants-fined-11bn-for-criminal-wrongdoing-8157483.html

11

Hmm. I’ve said that your post is full of out of date opinion and rubbish and you say that I am only interested in insulting those who disagree with me.

Which is the personal insult?

Leaving this nonsense to one side, you yet again fail to address the outstanding questions; instead you attempt to divert the thread into your favourite stamping ground (ironically enough, the topic to which the outstanding questions apply!).

I will not be drawn into meaningless debate, especially when it has nothing to do with the original post.

If you are desperate to know more about my opinion of CCSVI and what the money could otherwise have been spent on you could simply read the other CCSVI thread.

12

You seem not to wish to understand how lay people feel about these issues and why.

If clinical trials cannot be trusted to be honest, objective and fully reported upon for one subject (drugs for instance).

Then it means they cannot be trusted on any subject - CCSVI for instance.

That means lay people like myself will turn to the only information left, personal opinion of those experienced in particular treatments either because they have tried them for themselves or they have experience of them as medical professionals.

Here is one such opinion on CCSVI from someone who has MS has had the operation and is also medically qualified to speak on the subject.

http://www.youtube.com/watch?v=xKgganSjKEQ&feature=share

13

So I watched the video, and what did I hear Dr Campelani say?

“Angioplasty is not a treatment for MS”

In other words, it treats a different condition, and while it may, for a time, relieve a symptom of MS, it is not a treatment for MS.

Are you quite sure that this was the opinion you wanted us to hear, David?

Geoff

14

Yes, CCSVI is a separately diagnosable and treatable condition. There is a debate if it is in some way connected to MS and as you will be aware there is medical literature dating back over 100 years that suggests it maybe in some way connected, cause off, caused by or whatever.

However CCSVI is separately diagnosable and treatable and therefore that is why people want that diagnosis and treatment made available on the NHS.

People with MS do get other problems, type 2 diabetes for instance and such other conditions may or may not be related to MS in some way but just because we do not know we do not deprive them of treatment for those other conditions.

Now the treatment for CCSVI has one big downside, it needs repeating every now and then and if I were deciding funding for research that is where I would devote the funding - finding out how to make the operation into a permanent resolution of the issue.

The relationship or not with MS would come out over time as more people were tested for CCSVI.

15

l have been very interested in the CCSVI ‘saga’ for some time. Never have l heard it called a ‘cure’ for MS - or as a ‘cause’ - it has been my understanding that the CCSVI treatment can relieve the symptoms of MS. And l have always understood that CCSVI - is not ‘exclusive’ to pwms - it can effect all types of people.

Three years ago - l had a doppler-sound scan on my ‘jugulars’ and it appears that l have a blockage in my left jugular. The blood flow is completely restricted when l turn to the left and when looking straight ahead. lts only when l look to the right that blood is able to flow - but still slightly restricted. So yes, l would very much like to have treatment for this. lf l did not have MS - this treatment would be available straightaway.

Apart from hearing on youtube and on this forum of pwms who have had the treatment - and it has been successful - l also know of someone else who has had it done and it has transformed her life.

The main problem with CCSVI treatment is that it does not always last very long before it needs repeating - this applies to everyone who has it done - n ot just us with ms. So l do think that is where the research should be done - not under the ‘umbrella’ of ms - but for angioplasty for every one who has restricted blood-flow. A new ‘balloon/stent’ that will stay working longer - and not shifting.

Because l have relied on my right hip/knee to keep me walking - and dragging my left side - in 30yrs my joints have had to work so hard that now they completely worn out. Now l need a replacement hip/knee as now l can not walk. This is caused by my MS- and l certainly will not be denied the surgery because l have MS.

F.

16

It’s very simple; if people can afford the treatment and want it great go for it. Can the NHS afford to give the treatment that will perhaps give the patient a few months relief from symptoms NO. I would be the first to moan about scarce resources for this purpose.

It’s a no brainer really.

George

17

If we want to be precise, David, CCSVI is an acronym for “chronic cerebrospinal venous insufficiency”, and that term was generated by Prof. Zamboni in 2008. It should not be confused with the work of Rinfleisch in 1863, or of Puntam in 1935.

Zamboni offered a partial hypothesis, and the fringes of the medical profession were very quick to take advantage of a “new wonder treatment for MS” before waiting for that hypothesis to be put to the test.

So you would put research funding into into trying to make an unproven treatment “better” (note that one clinic on the continent did once claim to have already done this) rather than funding research into:

  • finding out if the treatment actually worked under controlled conditions (i.e. a scientifically valid trial).
  • finding out if there was avalid conection between CCSVI and MS (i.e. testing the Zamboni hypothesis).

Fortunately there are some people who are willing to conduct valid trials first, and are doing so (see the list of trials that whammel offered recently on another thread). Of course, waiting for proper, valid, scientific evidence, does not suit those who are making a lot of money from an unproven treatment.

Geoff

18

The ‘angioplasty’ procedure when done by the NHS - or a private lnterventional Radiologist - is not expensive. lts all the ‘clinics’ that have got on the bandwagon who are charging extortionate rates abroad and in Scotland.

19

Goeff

So far as I know angioplasty is an approved procedure. Obviously every procedure can be improved but I do not see that is a reason to deny it to people with a diagnosis of CCSVI just because they also have a diagnosis of MS.

What are you saying in unproven?

20

Well, yes, angioplasty is a procedure approved for certain conditions. To be precise, it is approved for the treatment of partial blockages in arteries. Read that carefully - approved for arteries. The V in CCSVI refers to veins.

As a procedure, it is usually performed my a consultant cardiologist, regardless of which artery is concerned. When I had an angiogram in 1999, there was a cardiologist standing by, ready to perform an angioplasty if I only had one arterial blockage. As things turned out, I had rather more than one blocked artery.

Using your logic, any treatment should be given to anyone who wants it, regardless of their actual condition. Follow this through to its logical conclusion, and you would approve of ECT being given to someone with an ingrowing toenail. Note, please, that ECT is not an approved treatment for ingrowing toenails. Now I am quite sure that you did not want to convey such an opinion, but you are arguing in favour of public money being used to pay for an unproven treatment.

As you know quite well, David, when I say “unproven treatment” I am referring to a procedure to expand a partially (or wholly) occluded vein as a treatment for MS. Note that this is not just my opinion. When Stanford University closed down its CCSVI operation, the following statement was made by Dr Jeffrey Dunn, Associate Director of the Stanford MS Center

“If I can do anything to protect MS patients from the potentially devastating effects of false hopes or the risks of invasive and unproven treatment, I am happy to do so”.

Now, If you want to debate “proven”, or “unproven”, in the context of the Popperian view of science in relation to the theories of (shall we say) Kuhn, or Lakatos, or Feyerabend, I will happily oblige. Until then, I submit that waiting for the results of even one of the pending Stage III trials is a far more responsible thing to do than arguing in favour of a treatment for which there is currently no valid evidence.

Geoff