Oops!!! LMAO!
I guess I must have meant it
The problem is still how do you find out reliable information about any treatment, it clearly is not through the licensing route because it is impossible for a layman to know what is true scientific data and what is not.
http://www.guardian.co.uk/commentisfree/2011/mar/05/bad-science-drug-trial-secrecy
Therefore you come back to patient opinion as the most reliable from a lay perspective.
Oh, the irony! LOL!
So there we have it. A perfect summary of the quality of logic underlying lay peopleās belief in unproven treatments.
David, until you can come up with convincing counter arguments to Karen and Geoff on:
http://www.mssociety.org.uk/node/632488
one has to conclude that you are in fact talking a load of b*******.
Apparently, this site was set up by volunteers who have had the treatment and not at all sure how reliable the information is, but lots of pretty graphs to look at.
http://ccsvi-tracking.com/index.php
Incidentally, like most people on this site I remain open minded about CCSVI, although happy to wait for the results of large scale trials going on across the pond.
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I know this an emotive topic but can we please try to keep things civil and knock off the agressive language?
Greg [admin]
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The old saying ārubbish in, rubbish outā springs to mind Iām afraid whammel (especially when you see things like balance and mobility going up but EDSS not going down; in fact it went up!). Lots of pretty pictures though.
When this theory was first aired, I got excited like lots of others. I even went to the MSS open meeting and gave the neurologist a bit of a hard time. I never believed that CCSVI caused MS, but I was incredibly hopeful that it might suggest a way to slow it down. However, the more Iāve read and the more the theory has been properly investigated, the more Iāve realised that it is more likely I win the lottery than āliberationā could cure my MS (and I donāt play the lottery). Does it work for some people? I really hope so. In fact, I canāt see why āliberationā wouldnāt prove of benefit for people who suffer from CCSVI-related symptoms. Does it do anything for MS? Well, if studies show that it makes a significant and long-lived improvement to MS, then I will be right at the front of the march demanding treatment for all who might benefit. But not until then.
I remember you posted a link to the multiple sclerosis research blogspot feedback from CCSVI studies presented at the ECTRIMS conference a while back, but couldnāt find it myself when I went to look. I remembered getting the email though, so for anyone who wants to know the science and not certain peopleās lay views, hereās what the scientists are reporting about CCSVI (from http://multiple-sclerosis-research.blogspot.com/):
P633: Haug et al. Intracranial venous pressure in MS is normal: ophthalmodynamometry data
Conclusions: Our data give no evidence however of an increase in intracranial venous pressure. Venous congestion in MS patients is implausible.
P631: Cavalla et al. CCSVI prevalence in a northern Italian population of MS patients and controls
Conclusions: In our population, CCSVI assessed by ECD appears to be more frequent in MS patients than in controls; however, CCSVI is found in more than one third of normal controls. These data are similar to those obtained with a similar protocol in a larger North American population. The issue of anomalous venous drainage in MS needs to be further clarified, also evaluating patients affected by other neurological diseases. The high frequency of CCSVI also in healthy controls suggests poor specificity of the current CCSVI criteria.
Conclusions: We found no evidence to suggest that MS patients have excess of CCSVI. In addition we failed to observe a typical venous flow pattern in MS patients. Until carefully designed controlled studies to investigate CCVSI have been completed, invasive and potentially dangerous endovascular procedures as therapy for MS should be discouraged.
Conclusion: Doppler sonography is a suitable method for the investigation of IJV. We have not found any hemodynamically significant stenosis. No correlation was found between Tr and VF suggesting that reflux is not an indicator of venous insufficiency. Reflux was not observed in the proximal part but was observed in the distal part, where lumen area is substantially larger and venous valves are found, suggesting that the turbulence due to lumen dilation and valve movements is the real cause of the reflux. We have not found any significant difference in hemodynamics that might support the idea of CCSVI in MS patients. Based on these results catheter-dilatation does not seem to be a rational and acceptable approach in the treatment of MS.
P531: Bonaventura et al. Femoral venous thrombosis and pulmonary massive embolism as a rare and major complication related to endovascular treatment of jugular veins in multiple sclerosis patient.
Conclusion: This case should advice attention on this serious side effect, with venous deep thrombosis and pulmonary embolism, because in many cases patients have interventions in another far country and they need to travel long distances quickly in the post surgery. Regardless of the efficacy of these procedures in MS, we advise that it is necessary to consider and prevent this serious adverse event.
P1103: Baracchini et al. No need for āliberationā in MS patients.
Conclusions: This study shows that CCSVI is definitely not the cause of MS nor is it a late secondary phenomenon of MS, as it is not associated with disability. Therefore, there are no bases for ādecongestantā procedures in MS patients. We strongly recommend extreme caution in interpreting an ultrasound-based diagnosis of CCSVI as absolute evidence of a pathological process involving the brain and the spinal cord, which in our opinion requires confirmation by VGF.
P1125: Burton et al. A systematic review of the association between chronic cerebral spinal venous insufficiency (CCSVI) and multiple sclerosis.
Conclusion: A meta-analysis of 8 studies found greater odds of CCSVI in MS patients compared to HC that was statistically significant, while such a relationship between CCSVI in MS patients vs. OND patients was not significant. However, limitations including uncertainty regarding blinding and its success and the marked heterogeneity of the results do not allow definitive conclusions to be reached. These early results raise the possibility that CCSVI may not be MS-specific, and it may follow, not precede the onset of disease. Further high quality controlled studies are needed to definitively determine if CCSVI is truly associated with MS.
Conclusions: Risk factors for CCSVI differ from established risk factors for peripheral venous diseases. Vascular, infectious and inflammatory factors were associated with higher CCSVI frequency.
P1105: Chambers et al. Chronic cerebrospinal venous insufficiency is not associated with clinically isolated syndrome or mild multiple sclerosis.
Conclusions: Our findings indicate that CCSVI, as defined by the Zamboni ultrasound criteria, is not seen in CIS and mild RRMS (EDSS <= 2), and provide further evidence that CCSVI does not have a causal role in the pathogenesis for the onset of MS.
P1104: Fox et al. Ultrasound assessment of chronic cerebrospinal venous insufficiency.
Conclusion: Initial pooled results found that 30% of subjects met criteria for CCSVI. A high proportion of subjects (45%) had valvular or intraluminal abnormalities on B-mode. Surprisingly, no subjects were found to have reverted postural control. Identification of deep cerebral vein reflux depended upon the ultrasound technique: QDP found reflux in half of subjects, but traditional Doppler found reflux in none. This observation highlights the importance of ultrasound methodology in performing and interpreting deep cerebral vein assessments. Ongoing studies will help clarify the potential relationship between CCSVI and MS.
P1108: Barreto et al. Prospective case-control study of CCSVI with imaging-blinded assessment: progress report focused on neurosonography.
Conclusion: At this stage, our studies suggest that NS findings described as CCSVI are much less prevalent than previously reported and do not distinguish MS from other subjects. We will now focus on whether NS can be complemented or supplanted by MRV and/or TV.
P134: Diaconu et al. Anatomical and histological analysis of venous structures associated with chronic cerebro-spinal venous insufficiency.
Conclusion: Post mortem examination of the IJV and AZY veins of MS patients and non-MS controls demonstrated a variety of structural abnormalities and anatomic variations. Vein wall stenosis occurred at similar frequency in MS and non-MS controls. However, the frequency of intraluminal abnormalities with possible hemodynamic consequences was higher in MS patients compared to healthy controls, although the current sample size is limited. These results suggest that MRV (which predominantly evaluates vein wall stenoses) may be less effective than ultrasound in identifying venous abnormalities in CCSVI. In addition, examining only wall circumference in CCSVI ultrasound studies may miss some intraluminal abnormalities.
Incidentally, for anyone who didnāt already know, the MSS closed discussion of CCSVI on facebook. Perhaps this might be from where we can welcome all our new users?
Karen
Thanks for that, I would therefore like to welcome those who have joined to discuss CCSVI.
I think it is great to receive reports for those have received this treatment rather than just the official ānot provenā arguments that get trotted out by those with no actual experience of the treatment.
[quote=ādavid603ā]
Karen
Thanks for that, I would therefore like to welcome those who have joined to discuss CCSVI.
I think it is great to receive reports for those have received this treatment rather than just the official ānot provenā arguments that get trotted out by those with no actual experience of the treatment.
[/quote] Quite David. A bit like those who trot out the āMS drugs donāt workā line, when theyāve been proven scientifically AND loads of us are the living, breathing proof.
Nothing wrong with stating an honest opinion, goodvibe. But people - including me - get very cross when unsupported opinion is presented as fact. Letās try not to get the two mixed up, then weāll all be happy.
Alison
Sorry? The official ānot provenā arguments carry no weight with you?
Isnāt that what medicine is about? Giving people sound advice based on evidence? By your reasoning anything that is ānot provenā must be OK and conversely things that ARE proven must be dangerous or ineffecrive?
Wooly logic indeed, David.
There is very little evidence to suggest that CCSVI is implicated in MS at all. The various methods of diagnosing CCSVI have been shown to be flawed and the people who do report positive results may well be improving due to a placebo affect. If I had invested $8000 in a procedure I sure as heck would have a vested interest in āfeeling betterā. And note that the areas of reported improvement are the ones that are not only the hardest to objectively substantiate, such as fatigue and cognition, but also those symtpoms that are most effectively influenced by the placebo effect.
I am genuinely pleased that some people have had a beneficial response to CCSVI treatment. If it is a placebo effect who am I to argue that their quality of life is not imporoved? But to spend $8000 on it? Not meā¦
Iāll spend that on a slap dash holiday instead and enjoy the benefits and well being that gives me instead.
Oh, and keep taking my DMDs that have been proven to work and which I personally can report have helped reduce my relapses significantly.
As always,
Belinda
Still throwing words and numbers around David? The implication of your comment on trials is that one or more drugs have been made available when they tend not to work. Which one or ones?
Stage 2 and 3 clinical trials conducted on a double blind basis do not determine if the item being trialed does or does not work. What they do is to indicate if there are any effects, how strong those effects are, if they are statistically significant and to what degree, and they report this in an open manner so that it is possible to replicate the trial.
Others have already commented on your use of a seven year old Parliamentary Committee report, so I need not repeat what they have said.
As a percentage, yes, very few people in the UK are offered the licensed drugs for MS, maybe 15% of those with a diagnosis of MS. But, as usual, you are trying to blur the facts. There are about 60 million people in the UK. it is generally accepted that 100,000 of these have MS. Some are PPMS, some are RRMS, and some are some are SPMS, so i would not expect there to be a large number to ābe offered drugsā. The majority of people who are offered drug treatment will be those with RRMS and this will be in accordance with the clinical guidelines (established partly by trials, of course). I do not have any data to hand that would support, or speak against, your 15% figure. If you are right, then 15000 people in the UK acually benefit from drug treatment.
And you need to remember that the commonly used DMDs are ALL licenced for use against MS. Other medication may be offered to deal with some of the symptoms that accompany MS, but you really should not confuse treating the condition with treating the symptoms.
Geoff
Wow! This topic has certainly caused some heated conversations! i have no comment on the actual CCSVI procedure, just was fascinated to read all the replies!
luv Pollx
ārizzo wrote:
The old saying ārubbish in, rubbish outā springs to mind Iām afraid whammel (especially when you see things like balance and mobility going up but EDSS not going down; in fact it went up!). Lots of pretty pictures thoughā
Yep, you are quite right and itās just another load of old anecdotes, but with nicer colours.
From what I remember, that open day was a touch disappointing, although more significantly, I did meet a charming young woman, so hardly a waste of time. Funnily enough, she was giving the Neuro a hard time too.
I spoke to Dr Klaus Schmierer (who was at the MSS Open day) at one of the Barts & London Research days and he was adamant that a study in Berlin could not replicate the Zamboni results. For the record, I donāt go along with the ludicrous theory about uncooperative Neuroās defending their patch and firmly believe they want good outcomes just as much as we do.
The Barts & London will report the study results when they become available, so will patiently wait until then.
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Hi All.
Lindsay 120,what a can of worms you have opened up.
So for what it is worth here is my opion.
It is like listening to a bedate in the houses of commons,most of that is way above my head,bit like this topic.
For some reason i keep thinking of two shoes?
There seems to be a lot of clever people on this forum now,but please remember we are not all as clever as you.
If you disagree with somone,and there is no proof in what they say,then dont open up its post,as they will never agree with you.
So hopfully we can put this post to bed.
And talk about somthing worth while,rugby would do.
Take Care All.
Chris.
Sorry Chris, but if someone posts something which is blatantly wrong then it is necessary for someone who has the knowledge to put them right.
Iām grateful to anyone who takes the time to do that. Thereās enough misinformation on the web as it is, itās wrong to let it go unchallenged when someone less knowledgable may be duped.
Chris,
It is not a matter of trying to make people who hold different opinions agree with mine. It is about putting a more balanced view supported by evidential based medicine so that others and particularly newbies arenāt getting potentially dangerous misinformation.
The statement made by one of the posters that she has ānever taken any MS drugs, they have never helped anyoneā for example, coupld make a Newbie decide to not follow theier neuroās advice, refuse drug tratment and end up with a far more disabling course of the disease than it needed to be.
I will definitely challenge any blatantly incorrect information I see. There is a saying that if you see wrong being done and do nothing you are as guilty as the wrong doer. Well, I for one have no desire to tacitly approve scare mongering, misinformation and blatant rubbish on the Boards that are recognised as being a reputable site where people can get reliable information.
Of course others are entitled to their opinions; but that is not the same as being entitled to state those opinions unchallengedā¦
Belinda
There is a lot of misinformation on the Internet.
I, like HKFooey, are grateful to those on these boards who take the time and trouble to challenge the nonsense that some people post. Thank you Brog64 and others who do this.
We all use the boards for different purposes but discussing rugby wouldnāt be one of my high priorities.
Iāve also never found sticking my head in the sand a very helpful strategy.
This is a perfect example of the misinformation that I mentioned. The whole Zamboni protocol in doing the doppler ultrasound to diagnose venous blockages is being questioned because of the unreliable results coming out of several trials. Many people who are diagnosesd with venous insufficiency under Zamboniās ultrasound protocols are found when they have a full venous angiogram done to have NO blockage at all.
I would also dispute your statment that the so called Liberation procedure is a simple procedure. Like any invasive surgical procedure it is not without its risks and there have been noted cases of people having died due to the stent moving to the heart post procedure and also several documented cases of deep vein thrombosis and pulmonary embolisms developing post procedure.
There are methods of achieving symptom relief with a range of well tolerated pharmaceuricals such as Baclofen, gabapentin, amytriptline (just to name a few) as well as physio and other exrecises. And these are far cheaper and more accesible than flying off to a clinic in another country. I would most definitley try and talk anyone I cared about out of having the CCSVI procedure done at this stage. To date there is simply not enough evidence to justify its use in my mind.
Belinda