So you will actually take the “evidence” offered by a journalist, without any scientific training (and whose principle claim to fame was driving a jet powered car without even checking that the tyres were rated for the speed that the car was expected to reach) as being valid. Wow, a Top Gear presenter who knows what he is talking about. Not exactly the cutting edge of science, is it?
Geoff
I completely agree Georgie. It doesn’t work for everyone, but LDN helps a lot of people. It’s certainly doesn’t deserve to be lumped in with “liberation”!
Don’t worry about David603 getting to me - I actually enjoy our spats (although I rather hope he doesn’t, lol!!!)
Karen xx
Karen
Glad to see you think LDN is a great treatment, I trust if the MS Society review does not make that point you will add your voice of disapproval
.
I’ve never argued that LDN doesn’t do any good David. However it doesn’t work for everyone, and it certainly doesn’t do the sort of things that you have a tendency to claim because people DO relapse and DO progress while on it; in fact some people get a lot worse. A large scale trial would be an excellent thing. Then we would all know how effective it is, once and for all.
Nobody has ever said that LDN works for everybody. If in your view a trial is the only way to find out what it does then it stands to reason that a trial is the only way to find out what it does not do. Since however the dose has to be adjusted to suit each individual person we do need to get a trial protocol agreed to address that issue, then of course there is the funding issue. Since no one has sought to fund licensing trials in the last 25 years I doubt they will in the next 25 years.
For a drug in in such widespread use I would like to see independent analysis of patient records of a random representative sample, say 2000 - 3000 because whilst I know a lot of people it does work for and some that it does not I would have great difficulty putting a percentage success rate to it.
I would like to see the same thing for CCSVI, sufficient people have had that to give a good indication of its effectiveness, it is just no independent body is collecting the data.
A system of independent reporting is what is required, clinical trials all give different answer to any particular question. You will note someone has put up data about a report/trial that gives a different view about flu vaccine to the Cochran Collaboration. Trials are like statistics if you want to you can decided what you want to believe and find a trial to support that view on almost any subject.
I truly wish the rigorous scientific training you refer to was always implemented. Fact is vested interests get in the way of that. I was a design engineer in the electronics industry, it is just as true there, the money men make the decisions on what gets designed and marketed.
The primary problem with medicine is that far too much research is in the hands of the drug industry and they get paid for the wrong thing, selling drugs. What we need companies to be paid for is keeping people well and using drugs and vaccines only when that is the best way of doing that. ‘First do no harm’ and ‘Let food be your medicine’ have been sacrificed on the alter of money. In the NHS we are getting to the point with MS that if a drug is licensed you can not have it because it is too expensive and even if something is dirt cheap you still can not have it because it of so called lack of evidence, although of course the post code lottery even make both those issue depend on where you live.
“Nobody has ever said that LDN works for everybody.” You used to imply this all the time, and still do occasionally.
“then of course there is the funding issue”. There are many charities and funding bodies who provide monies for research. Research is far from wholly reliant on pharmaceutical companies.
“they get paid for the wrong thing, selling drugs”. What else would a pharmaceutical company do?! Do you honestly suggest that non-profit making companies and agencies fund pharmaceutical research instead. They couldn’t afford to! They only way to fund the huge costs of research is to sell the end product. (Unless you want to start paying 75% tax (e.g.)?) It is unbelievably naive to suggest otherwise.
I’m sorry David, but your statements “For a drug in in such widespread use I would like to see independent analysis of patient records of a random representative sample, say 2000 - 3000” and “A system of independent reporting is what is required” show how little you understand good science. And, no, I am not going to go into it - it would take too long, and I am too tired.
In fact, I am tired of repeating myself full stop. Enough for this time.
The real shame of the LDN debate (and the CCSVI one as well, to some extent) is that the question of an apparently good, low-cost, treatment has been clouded by some obsession over the role of the big drug companies in “killing” it. Of course, the big drug companies could not care less about LDN. They really are in business to make money for their shareholders – and in doing so they provide employment for a lot of people, and pay the government a lot of taxes.
Those of us with some training in scientific method are concerned that real evidence is being replaced by “evidence” in the argument. To start to get real evidence is not difficult, or expensive, and I expect there are more than two of us here who could suggest just how that could be done. Karen has pointed out that there are actually quite a lot of bodies who give grants for research – what they need are good reasons to give it. I have no doubt at all that the early part of next year will see a number of post-grad students doing a Masters in Health Psychology who want a good project (for CCSVI make that Bio-medical students). So, instead of banging on about the wicked drug companies, go and find the right student who will do a project that can be adopted as a pilot when talking to one of the grant-making bodies. If it’s a good project, it might even get them a place to do a PhD – on the same topic! This is called a “win-win” strategy. Win-win is better than bleat-bleat – every time.
Since both of you know where the funding bodies are why do you not get the funding for the tests you want to see. LDN was first applied as an experiment to MS in 1985.
Many people have attempted to get funding for LDN trials over the years but as yet 25 years after it was discovered there is still no funding path for licensing trials. If qualified medical people can not get funding why an earth would you suggest a retired electronic engineer is likely to succeed.
While you are about it you might like to get magnetic therapy endorsed by this NASA study adopted as yet another treatment for MS.
http://ston.jsc.nasa.gov/collections/TRS/_techrep/TP-2003-212054.pdf
No doubt we need yet another qualified person to have a personnel interest before that one sees the light of day. You will find the reports by Professor Ruven Sandyk on the pub med database.
Thanks to Dr Geoff and Karen for the informed views.
There are so many holes in the ‘Evil Big Pharma’ arguments that I suspect that they’d take up a whole page. So here’s one. My husband has been diagnosed with Familial Hemiplegic Migraine. This is a serious condition, with stroke-like symptoms to go along with the visual disturbances and pain and hemi-paresis (one-sided weakness).
The neurologist originally thought it was Transient Ischaemic Attacks, but as the symptoms last for hours, not minutes, this has been discounted.
He also has a large Arachnoid Cyst and a malformed Carotid Artery (Aplasia) but the blood flow is good and the cyst isn’t putting pressure on his brain. This makes his case rather complicated and he’s been suffering with it for years. It was mis-diagnosed as delusional psychosis and depression and he was prescribed anti-depressants, none of which worked and one almost killed him, as his liver couldn’t metabolise it. (Venlafaxine or Effexor)
So, with a genetic test to discover where the mutation is, we were thinking that there would be no treatment. This condition was only discovered in 2006 and to our great surprise, we were told that it’s treatable - with a Calcium Channel Blocker. A very cheap drug that has no dreadful side-effects.
Research is going on all the time - as an example there’s Dr Hughes, with his work on blood clotting disorders.
There’s the Helicobacter Pylori discovery in 1982, which revolutionised treatment of gastric ulcers.
There is a lot of research out there, (including CCSVI), which involves drugs that are in common use. There are daily reports about possible treatments to help with MS and its symptoms, involving old and out-of-patent drugs, from Tumeric to Statins So what if the drug companies make money? I would be dead without the cocktail of anti-hypertension drugs, which keep my blood pressure under control, after my first MS attack. I’d be far more affected by MS had I not responded well to Rebif. There are people here, in north Spain, where I now live who have been on Rebif since 1997. I was very surprised to learn this from the Rebif nurse.
So, David, it’s very confusing to newly diagnosed people, who may have RRMS or PRMS to read that they don’t have to listen to their neurologist and that if they take LDN, that their MS will be switched off (as you put it in your letter). It may well respond to LDN, but what if it doesn’t? What if the person with MS continues to relapse?
It was a bit disturbing to read that account of the neurologist who was laughed off the stage at the CCSVI/LDN conference. That person took the time to go and try to speak. Neurologists aren’t crooks who specialise in the brain in order to make people more ill. They deal with strokes, Parkinson’s disease, MND, MS, Alzheimer’s and they deal with a part of the body that has only become possible to see clearly in live patients with the invention of the MRI scanner.
I like LDN. I would never use it on its own now, but whilst I can afford it, I’ll stay on it, along with my handful of other medicines which help me to stay alive and in moderately good health.
I had no choice - it was take the drugs or die. You have stated many times, David 603 that you and your wife don’t like prescription medicines. You are very fortunate that you don’t have a life-threatening condition. There’s no health-food or yoga or magnets fix for my hypertension. It was caused by a lesion.
I don’t eat gluten as it makes my nerve pain worse. I have to eat a diet that is low in carbohydrates - on doctors’ orders, in order to avoid Type 2 Diabetes. I take Vitamin D3 and sleep propped up. Life is far more complicated than you like to make it look - most of us are taking off-licence drugs to help with our MS, not just LDN. Time to take off the blinkers and see that this is a complex disease with many causes and variations in its manifestation.
I find it heartening that there is such a vibrant discussion on this forum.
I don’t claim to have medical knowledge. I do claim to have personal experience, and my experience has been sufficiently dramatic to convince me that the CCSVI procedure has beneficial effects, at least for some people.
On the issue of risk: so far as I can gather, the procedure was established in order to treat stroke patients, and has an extremely low rate of complications. I think it is important for people opposed to the procedure to come up with cases of complications, rather than just asserting that the procedure is a dangerous one. As I said originally, the only significant risk seems to be losing £8000.
On the scientific issues: it would seem that there are quite a lot of people in the general population happily going around with constricted veins in their neck. However, the percentage of people with MS who have obstructed veins is very high. Widening their veins appears to be helpful for many people with MS. The idea that one factor in MS is an accumulation of chemicals in the brain doesn’t seem ridiculous to me. The relevant issue, surely, is the extent to which people with MS experience dramatic improvements following vein widening.
I regularly contribute money to the MS Society, and I’m happy to see it spent on the re-myelination project, although I don’t think I will personally benefit greatly from it even if it is a brilliant success. However, my understanding is that the pattern of damage to people’s myelin sheaths doesn’t correlate particularly well with their symptoms, which makes me wonder whether repairing the myelin sheath will actually be the whole story.
Finally, I am not unduly impressed with evidence-based medical practice as found on the NHS at the moment. I was referred to the urology department at our local hospital because I had a urine infection which cleared up after a dose of antibiotics. They said that I wasn’t emptying my bladder properly. However, I have only ever had one, or possibly two urine infections whilst urinating in the normal way. Anyway, in order to avoid the danger of urine infections the consultant who deals with MS patients who have urology problems said that I should have a suprapubic catheter to avoid infections. My wife, who was a social worker with disabled people, said that many people she had run across with suprapubic catheters had bad problems of infection from them. The consultant dealt with this by getting angry and essentially saying there was no alternative to a suprapubic catheter for me. Since having it fitted I have had constant urine infections. The only way to avoid them is to take two antibiotics daily; attempts to get down to one a day or to background antibiotics haven’t worked. I have subsequently checked the Royal College of Nursing guidelines on catheters. These state that infection is very common in people with long-term catheters. The guidelines also emphasise informed consent, including, obviously, information about possible infections. They also state that failure to fully empty your bladder is not of itself a reason for installing a suprapubic catheter. In other words, if my urology consultant was a nurse he would be in danger of being struck off.
Compared to this, the behaviour of the Essential Health Clinic in Glasgow was exemplary. They made it clear that the CCSVI operation has very variable results, and did not promise anything particular. I don’t know to what extent the people involved are making a profit, but they are aiming to get the operation available on the NHS, which will make a dent in their earnings if it is successful. This doesn’t seem to me like the behaviour of rip-off merchants.
David603: “Since both of you know where the funding bodies are why do you not get the funding for the tests you want to see.” I would, had I not had to retire from academia because of my MS. And if I was still working, I would have far higher priorities than a study of LDN.
Katrine: yours is a perfect illustration of a sad truth - many people’s lives would not be worth living without meds and research. Some people like to bemoan the processes that bring these drugs to market, but like you, I am enternally grateful that they exist.
Geoff: LMAO at the “bleat bleat” 
cmcowling: I’m sorry to hear of your problems with your catheter & neuro, but this is hardly an example of evidence-based medical practice - it is simply a case study of a patient who has been on the wrong end of a bad decision by a consultant. These forums, and others, are full of similar examples.
There are risks associated with the CCSVI treatment. In fact there have been deaths as a result of it. Many people also require multiple treatments because of complications. These facts notwithstanding, I have never claimed that it is a dangerous procedure; merely unproven (as demonstrated by the fact the the proposer himself, Prof Zamboni, stresses that people should wait for the completion of clinical trials before considering having it done).
You state that you do not find it ridiculous that an accumulation of chemicals in the brain is a factor in MS. I wonder if you have read the relevant literature? There really is very little that supports this theory - indeed the vast majority of research is against it. You also state that the Essential Health Clinic themselves told you that the procedure has very variable results. I think people should take some time to dwell on that statement: “very variable results.” Hardly the anticipated outcome if CCSVI was a factor in MS. And how much different to what might be expected because of the placebo effect? Never mind chance?
Unless someone has plenty of spare cash so that they can afford multiple “liberations” (because two or three goes are often needed) and is perfectly happy to accept that they are at risk of complications from a procedure that may well do nothing for them (and may even cause a deterioration in their condition), there is only one sensible thing to do with regard to CCSVI - wait.
Incidentally, many of the people on this forum live on benefits and/or have a relatively low income. Many MSers do. £8000 is therefore an exorbitant sum of money; more than many of us could afford to lose in a lifetime, never mind two or three or even more times. It is also a ridiculous amount to pay for what is effectively an outpatient treatment. It doesn’t even include the accomodation for heaven’s sake! You don’t know to what extent the people involved are making a profit? It’s not rocket science! But perhaps it’s to fund their marketing budget - after all, persuading people that they are pioneers and not profiteers must cost a small fortune.
Hello All,
Wow i think i put my foot in it by asking about CCSVI. Ooops
Thank you all for your comments… very mixed messages… i have researched so much and i haven’t come accross anyone who has had a negative experince with this treatment and in fact anyone who has had this treatment has said that this has helped them. I am still undecided as i may have to do again as It isnt clear to me if one treatment would be enough.
I had an appointment with my neuro last Thursday and mentioned CCSVI - he was not happy!!! he told me not to think about it as there wasnt enough research! BUT if there are people who have had this treatment with such positive outcomes surely its a good thing!!
Once again thank you all for taking the time to read the comment, your feedback is greatly appreciated!
Dee
xx
In today’s day and age anything medical is becoming more expensive. I object to NHS money being spent on drugs/procedures that have no credence; have not been subjected to very rigorous; expensive trials. I would sooner it spent on a drug that WILL prolong someone’s life.
Medical science is making inroads to many previously untouchable complaints; at a very hefty price. I am PPMS; been benign since 1982 and it costs me £60 for 3 years supply of my Snake Venom; the only drug I take.
I’m positive anyone receiving LDN supplies that they pay for will continue to while the admirable Linda Elsegood keeps battling for a cause that will never see the light of day; nor will CCSVI.
I take what David say’s with a pinch of salt. The only good statement is from the woman with the unpronounceable name who lives in Northern Spain; quote ‘Time to take off the blinkers and see that this is a complex disease with many causes and variations in its manifestation. ‘
George
Hi Dee.
If you decide to go ahead with it, then I wish you every success - after all, maybe most of your symptoms are due to CCSVI and not MS in which case you’ll get a good result.
However, I hope you do not make your decision based only on the websites, stories & videos etc you have read & watched on-line. Most people do not get amazing results. Unfortunately, negative stories do not tend to get posted on forums or youtube etc. Part of this is probably because people are embarrassed to have wasted their money. Part of it is because people who don’t get good results feel ashamed to let their fellow pro CCVIers down. Part of it is because anyone who speaks against CCSVI is treated like a pariah by the people who support it. There are plenty of evangelical-like pro CCSVIers out there and they dominate the internet. Behind the scenes and in the scientific communities who research it properly, it is nowhere near so positive.
If something seems too good to be true; it usually is.
Karen x
Karen
I agree with you entirely. If something looks too good to be true it probably is, like a multi billion pound sickness industry looking for the cure to cancer so that it can go broke. Obviously too good to be true.
I do how ever agree one must check out the negative side of all procedures licensed/ proven or not. CCSVI/ LDN/ Tysabri/ Camparth. or whatever else you want to try has to be considered very carefully.
I don’t know which planet you live on David, but you do let your biases show through.
If any major pharmaceutical company could come up with a “cure for cancer” they would make a very large fortune. Probably, that fortune would be enough to bail out every bank in Europe. But, it would still only be a cure for “cancer” and not for the myriad of other conditions that medication is produced for, and prescribed for. Heart conditions (as a general term) kill more people than “cancer”, and one of the most widely used medications is something that has been a generic for a lot longer than LDN has been in use for anything. Yes, I am referring to Aspirin. I take mine every day, along with some other well known and low cost items. No, they don’t cure anything, but they are proven - by proper trials - to minimise the chance that I will need another bypass operation.
In the real world, there are four major types of cancer - each with several (or many) manifestations - and no one “magic pill” would work on them all. Even if we look at just one variation, like skin cancers, a simple preventative measure would be to ban all sun-bathing. This would, of course, have to be balanced against the benefits of sunshine on young children (in suitable doses, of course). Then, we would see people flying off for holidays just to sun-bathe, claiming it was their right to do so.
If I referred to LDN as a “Snake-oil” treatment, that would offend those people who derive a lot of good from it; your reference to a “sickness industry” has probably offended a whole lot more.
Geoff
Dee, in answer to your CCSVI query, I can name many people who haven’t had a good outcome from CCSVI treatment. If you go to thisisms.com you’ll see the huge forum for CCSVI.
There are posters there who have permanently scarred and blocked veins and there’s a whole thread for people who haven’t benefited from the procedure. Please read this before going to have treatment.
It’s so expensive in the UK, that not many people can afford it and in reality, you need to put aside enough cash for two procedures. The interventional radiologists in the US don’t now offer more than 3 treatments.
There’s a poster at thisisms called Dania who has written about this and of her very sad state of health now and you will find others. Some have had three procedures and are slowly improving, but it is not without considerable risk, despite what David603 thinks.
You can’t have CCSVI treatment if you’ve had Mitox and you will have to take strong blood thinners afterwards for some months.
If you go abroad, the NHS may help you if you have problems afterwards - but they may not. There is no guarantee that you will get help.
I’d have the procedure in Scotland, if I could afford it.
This forum has much less activity than before the move from the old site. Your best bet is to got to thisisms and read and read. Facebook is too biased, I’m sad to say.
best wishes,
Katrine
hiya Dee, is it all that cracked up to be, if it was that good, why go more than once, why isn’t it on the NHS, just how much benefit and for how long does one get from the benefit, from the procedure, it seems a shame to have a holiday (in Poland or elsewhere) wasted by a operation, it seems to me, that the only people benefitting from CCSVI is the clinics, good luck to those who try, nothing ventured nothing gained, but it does seem an expensive light relief, brian
A doctor recently said to me that MS is actually a symptom itself of several underlying different problems. Two people with ms probably have a different underlying cause. Which is why some people respond to one treatment while others do not. Each persons MS is different to anothers beacause the cause is probably different. Some people respond well to CCSVI, LDN, beteferon etc and others do not. Many believe that they have reversed their symptoms by changing to the Best Bet diet…
I had radiation treatment for hogkins Lymphoma and the tumour was on the left side of my neck. I have demyelination in neck causing neuro problems. The radiation treatment is known to cause vein stenosis. I am awaiting to have the doppler test on the NHS because experts seem to think there could be a link between the stenosis (CCSVI) and the demyelination. They have said that I will get the operation if the vein is showing stenosis. I have not got an MS diagnosis yet as I only have one lesion and a clear lumbar puncture. If I were to get an MS diagnosis I probably would not get the operation on the NHS!
lol Moyna