The following is from a superb blog some of you may know. I was widely vilified as a non-believer from some on this site during the peak of the frenzy. I have never been unhappier to be right and hope the suggestions made in the article are followed through. “What lessons can we learn from this epidemic? Many! Firstly, the medical community must take any future scare of this nature seriously and start a dialogue on the topic with MSers immediately. Secondly, we need to make sure that we expose bad science as quickly as possible. Thirdly, we need to quash any conspiracy theory as soon as possible; transparency and openness should be the order of the day. Fourthly, we need to engage with the public and have a continuous dialogue with them; they are too intelligent not to be treated in this way. Fifthly, we need to regain our credibility; no more patronising behaviour or condescending comments. Sixthly, admit we got this one wrong; MSers have died and suffered unnecessarily.” “I suggest we all take a deep breadth and reflect on what has happened; it should never happen again.”
I take it you are not interested in waiting for the results of the trials then?
The quote is from a neurologist blog whom continues to stress the fact that there is no evidence of a causal link.
I do not need to wait for any trial results to satisfy my opinion as the findings of the study shows a map relating to ‘spikes’ of CCSVI histeria without any sustained evidence of a direct relationship to MS. My personal opinion is that many of our unfortunate friends have been exploited by failed science.
Judge for yourself my friend.
http://uk.mg.bt.mail.yahoo.com/neo/launch?.partner=bt-1&.rand=bv2n6tb8j6vln
Why should Geordie wait for the results of all the trials when a small minority of the medical profession have not done so?
And, Geordie, the link you provided takes me to a page asking me to renew my Yahoo Mail account - and I have never, ever, had a Yahoo Mail account. The quote you gave could have been applied to almost anything - not just CCSVI. personally, having seen European clinics advertising that their CCSVI treatment is better than the rest, and American “clinics” that fly their clients to India for the procedure, I think that waiting for the trial results is the only morally correct thing to do.
Geoff
I have met the Neurologist in question and been reading his excellent blog for years. The fact remains that there are at least a couple of large scale trials running and I prefer to keep an open mind until the results are known.
Personally, I won’t be judging anything just yet, but each to their own.
Did you complete the CCSVI survey on the blog?
http://multiple-sclerosis-research.blogspot.co.uk/2012/10/understarters-orders-brave-dreams.html
Last week I went for the CCSVI scan. Im not sure whether I have ms or not. One neuro thinks I have radiation myelopathy (after cancer treatment) and another thinks I have a benign form of MS. I have one lesion in neck and clear lumbar.
Anyway the CCSVI scan was clear/normal so no blockages. The radiologist said that 99% of patients she screens with MS do have blockages so on that basis she thinks that the neuro who thinks radiation myelopathy is right!
Moyna
This blog is as Whammel wrote, superb. I can’t thank Professor G and the Mousedoctor enough. It’s difficult to write thanks as they are trolled by CCSVI evangelists, who even wrote to Prof G’s head of unit to try to get him silenced or sacked, which is so outrageous that it’s difficult to believe.
It seems that it’s okay to post youtube link after link (on the internet) and write stupid comments about how Big Pharma are stopping research, but it’s not okay to blog about neurology trials and the worse side of the CCSVI industry? (according to CCSIV-org)
We’ve had our fingers crossed, some have prayed, some have hoped and hoped that ‘Liberation’ is the answer, but it seems to be yet another fix for rich people who are recently diagnosed.
I completed the CCSVI survey on the blog as well. I hope the trials do show up good results for newly diagnosed people, but I’m not expecting miracles.
Here’s a quote from a past ‘cure of the week’ . It’s from a You and Yours transcript. There may be a prize for the person who guesses what the ‘treatment’ is.
“We’ve treated almost all neurological patients. The fairly large group are the MS patients and they seem to have quite a variable response because of the nature of the disease, there’s about 10% that has an excellent extremely well response, there’s 70% that has a favourable response in about three months so that they would say yes I would do it again and there’s 30% of non responders. And obviously we’re looking what is the difference between them and how can we select these people.”
[quote=“DoctorGeoff”]
Why should Geordie wait for the results of all the trials when a small minority of the medical profession have not done so?
And, Geordie, the link you provided takes me to a page asking me to renew my Yahoo Mail account - and I have never, ever, had a Yahoo Mail account. The quote you gave could have been applied to almost anything - not just CCSVI. personally, having seen European clinics advertising that their CCSVI treatment is better than the rest, and American “clinics” that fly their clients to India for the procedure, I think that waiting for the trial results is the only morally correct thing to do.
Geoff
[/quote] I’m sorry about the link I’m not sure what happened there. If you google neuro MS blog it’s easy to find. I can’t see where morals come into the equation as regards waiting for the study results but appreciate why you may wish to in order to form a balanced opinion.
I have not a shred of doubt: CCSVI does not cause MS. There have been loads of studies done now in people with CIS and children with MS and the numbers do not stack up at all.
The time and money wasted on all these studies makes me want to weep.
And it’s all because of a very dodgy research paper that lit the fuse under the MS world and was grabbed by a small group as their saviour and who then ran rampant on the net.
In the beginning, its supporters proclaimed CCSVI as the cause of MS. “Clinics” appeared in various countries and the desperate duly spent ill-affordable thousands at last ditch attempts to be cured of their MS. Some proclaimed miracles and posted you tube videos of the results. Many did not and were never heard of again. But the hysteria spread. More “clinics” opened. More videos and blogs sprang up. The hysteria began to have teeth - OMG, votes might be at risk here!
Research grants began to be given, taking researchers and funding away from other projects. The majority of studies were negative and it was shown categorically that CCSVI does not cause MS.
So then the story changed to CCSVI making MS more severe and/or it being a completely different condition for which treatment was being withheld from MSers. And the clinics still prospered (especially given the increasing amount of repeat business) despite the author of the original paper and “father of CCSVI” telling people to STOP - not to have the procedure done in these clinics. But the furore continued, albeit with subtly changed messages.
And more money was thrown into the research pot - all driven by “people power”, few of whom have any decent research training or even understanding. Millions and millions of pounds that could have been spent elsewhere, on things like meds for PPMS, stem cell treatment, myelin repair - you know, stuff that MATTERS.
But, oops! Most of the studies were negative. “Conspiracy!” claim the CCSVIers. “We demand “liberation” on the NHS!” And the clinics expanded, introducing other “specialists” who could help you get rid of your MS without those nasty, “toxic” DMDs, etc. And the money flowed, and the you tube videos and blogs continued in their ferocity, but perhaps not in the same number…
I have no idea what the CCSVIers claims are now and, frankly, I don’t care. The way that some of them conduct themselves, using scare tactics about other MS treatments, internet hoologism, aggressive personal campaigns, etc, means that I actually hope that the studies find absolutely nothing to support it. Not that it would bother most of them - some will claim a cover up and continue to campaign in increasingly small and poisonous groups, some will simply move on to the next “great hope”. My great hope is that something like this never happens again. Research should lead research; not desperation and evangelism.
“People power”? More like mass hysteria.
Rizzo can i just say you have put into words everything i would have said, fantastic
And thats coming from someone who is at the moment taking Tysabri in a SPMS trial, Which is where i believe more money should be spent rather than the so called Liberation !!
John
The most disgusting thing that I’ve read this week is on the CCSVI in Multiple Sclerosis page on Facebook.
There’s a post from Joan Beal pointing people to read about BG12 and after reading it, I realised that she’s very anti.
On the same page, under her post is a remark by a lady called Sarah O Connor who was sad that the BG12 drug has been delayed and that she has Marburg’s Variant of MS. This is one of the very worst types of MS to have.
What does Joan Beal recommend?
“Talk to your doc about curcumin, EGCG and milk thistle supplements. These are three of the Nrf2 activating ingredients found in protandim, shown to be more effective than BG12 in fighting oxidative stress in pwMS. My hubby’s been on them for four years now, as part of the endothelial health program. Print out this note, bring to your doc and see if he/she thinks these supplements might be indicated for you to help prevent oxidative stress. I’m not a doctor, but just trying to help get info out there. take care, Joan”
This is scandalous advice. Criminally bad advice. Here’s a quote from Wikipedia.
“It is usually lethal, but it has been found to be responsive to Mitoxantrone[5] and Alemtuzumab,[6] and it has also been responsive to autologous stem cell transplantation.[7] Recently it has been shown that it presents a heterogeneous response to medication, as does standard MS.[8](Marburg acute multiple sclerosis - Wikipedia)”
Thanks for spelling it out so clearly Karen.
I can’t be the only person on here who had family members calling and saying ‘You must go to Poland and have this treatment!!!’ and treating me like I was mad because I said there was NO WAY I would go and have a treatment costing thousands of pounds that hadn’t been researched properly… and done at some ‘iffy’ clinic that claimed to cure MS.
It’s so sad for the people who spent life savings or got into huge debt to have the treatment that simply did not work.
Pat x
Okay, by the way - the quote from earlier was the hype for Stem cell treatment in Rotterdam by a certain Dr Tressel. He injected stem cells straight into people’s necks and whoops! He ran out and so used bovine stem cells.
The placebo effect kicked in and as usual, some six months later, people were back to where they were pre-treatment in terms of their MS. Yes, just like most people after CCSVI.
I get so angry with these ‘cure of the week’ scams.
[quote=“rizzo”]
I have not a shred of doubt: CCSVI does not cause MS. There have been loads of studies done now in people with CIS and children with MS and the numbers do not stack up at all.
The time and money wasted on all these studies makes me want to weep.
And it’s all because of a very dodgy research paper that lit the fuse under the MS world and was grabbed by a small group as their saviour and who then ran rampant on the net.
In the beginning, its supporters proclaimed CCSVI as the cause of MS. “Clinics” appeared in various countries and the desperate duly spent ill-affordable thousands at last ditch attempts to be cured of their MS. Some proclaimed miracles and posted you tube videos of the results. Many did not and were never heard of again. But the hysteria spread. More “clinics” opened. More videos and blogs sprang up. The hysteria began to have teeth - OMG, votes might be at risk here!
Research grants began to be given, taking researchers and funding away from other projects. The majority of studies were negative and it was shown categorically that CCSVI does not cause MS.
So then the story changed to CCSVI making MS more severe and/or it being a completely different condition for which treatment was being withheld from MSers. And the clinics still prospered (especially given the increasing amount of repeat business) despite the author of the original paper and “father of CCSVI” telling people to STOP - not to have the procedure done in these clinics. But the furore continued, albeit with subtly changed messages.
And more money was thrown into the research pot - all driven by “people power”, few of whom have any decent research training or even understanding. Millions and millions of pounds that could have been spent elsewhere, on things like meds for PPMS, stem cell treatment, myelin repair - you know, stuff that MATTERS.
But, oops! Most of the studies were negative. “Conspiracy!” claim the CCSVIers. “We demand “liberation” on the NHS!” And the clinics expanded, introducing other “specialists” who could help you get rid of your MS without those nasty, “toxic” DMDs, etc. And the money flowed, and the you tube videos and blogs continued in their ferocity, but perhaps not in the same number…
I have no idea what the CCSVIers claims are now and, frankly, I don’t care. The way that some of them conduct themselves, using scare tactics about other MS treatments, internet hoologism, aggressive personal campaigns, etc, means that I actually hope that the studies find absolutely nothing to support it. Not that it would bother most of them - some will claim a cover up and continue to campaign in increasingly small and poisonous groups, some will simply move on to the next “great hope”. My great hope is that something like this never happens again. Research should lead research; not desperation and evangelism.
“People power”? More like mass hysteria.
[/quote] As usual I couldn’t agree more Rizzo. I seem to remember we were both harangued by the believers when we dared to preach caution at the height of the hysteria. I will say again that I am not happy that the ‘liberation’ treatment is nonsense however as you say the time and money spent on his can only have harmed more deserving areas of research.
There will always be clever, heartless medics who only did their degree(s) to exploit as much money as possible out of desperate people who are willing to try anything
I’m not religious, but sometimes I really wish there was a Hell
And I’d also shove in anyone telling a person with Marburg’s to take supplements instead of the strongest possible DMDs. Unbelievable that anyone who knows anything could be so irresponsible and plain STUPID!
Kx
Seems to me that the only thing certain that the so-called “Liberation” treatment has proved to be good for is:
Liberating money from Wallets.
Geoff