Talk:Chronic cerebrospinal venous insufficiency controversy/Archive 2

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Only those statements that can be disputed should be sourced. The sentence I wrote, and your specific wording of it, (that anecdotal evidence is not a scientific proof of efficacy) is not contested. Even more important is the fact that it is in the article of anecdotal evidence, so a reader could learn it from clicking to it, but I thought that specifically saying it was a way of making the article easier to understand to lay readers which do not need to know what is the meaning, and consequences, of anecdotal evidence. Anecdotal evidence can never proof efficacy, so it is not specific to the CCSVI article, and therefore I agree that it is not needed to say it so in this article, but I still believe that it puts into context the implications of anecdotes as evidence for a lay reader and eases their reading. In the source it is said many times that "should be taken with care": I'll want something similar, (their reliability is low?, other?) since "should be taken with here" sounds too much directed-to-patients and how-to-ish. What do you think? Any ideas on wording? (I am not going to re-add it until further discussion).

On the other hand we have the issue of "since": it is not a cause-effect relationship: anecdotal evidence has many other problems apart of selection bias since no variables at all are controlled: therefore saying "since" is oversimplificating and lying so we can not say "since". In addition at no point it is implied in the source that it is a cause-effect relationship, or that there are not other possible bias. I am going to re-add the "for example" although any other wording that makes clear that it is only one of the possible bias would be fine to me. I have reworded it to: Patients' stories are considered only anecdotal evidence. For example those who have had a positive result are more prone to post their case than those who had little or no improvement.

--Garrondo (talk) 12:08, 15 October 2010 (UTC)

I have done a further trial adding a new source for the deleted statement: Such patients' stories are considered only anecdotal evidence of efficacy,[33] which is considered the least credible among scientific information.[37] In relationship to CCSVI it has been specifically pointed out that those who have had a positive result are more prone to post their case than those who had little or no improvement.--Garrondo (talk) 13:25, 15 October 2010 (UTC)

There is nothing in the source which mentions anecdotal evidences of outcomes of CCSVI treatment about empahsizing the lowest credidibility of anecdotal evidences in general. Garrondo, I admire at your determination to oppose CCSVI treatment by whatever means you have at your disposal. However, here you are doing your original synthesis WP:SYN, which is not admired by the Wiki community. Sergei Gutnikov (talk) 14:47, 15 October 2010 (UTC)Do you

Agreed. Reverted myself.--Garrondo (talk) 14:53, 15 October 2010 (UTC)

Side note: not opposing at all, while it is true that it was synthesis (and I apologize for that) I believe that patients can do whatever they want with their money and life. They can later post whatever they want in internet, and it is evidence pointing at something, but a very low reliability one (I hope you agree with that since you have publised in methological themes). I only wanted to point this out: as I said it is said in the anecdotal evidence subarticle and I thought this was non controversial (and therefore synth did not apply), but not everybody is going to go to that article.--Garrondo (talk) 15:06, 15 October 2010 (UTC)

Thank you for understanding. I think the article is neutral and cannot be accused of promoting the unverified treatment. Sergei Gutnikov (talk) 16:06, 15 October 2010 (UTC)

Going back to the assertion that "Only those statements that can be disputed should be sourced", this is by no means a broad concensus. See the recent discussion at WT:V. With regard to the term "anecdotal evidence", perhaps it's worth discussing here just how that term is distinct from "post their case", an idea which is clearly supported by the source. While another source might be needed to back it up, this is, at least in my mind, a crystal-clear example of confirmation bias in self-reported anecdotal evidence. I can't see any other way of interpreting the wording in the source. LeadSongDog come howl! 16:46, 15 October 2010 (UTC)

I have tried again to reword advises of caution, following the source almost word by word.--Garrondo (talk) 06:39, 18 October 2010 (UTC)

Sergei: I believe I follow the source with care and you still revert me: I added to the article the following: Caution about these internet personal stories and not to give excessive importance to extreme recovery examples have been advised.. The source has two different comments from experts and with your revertion only one is taken into account. First expert says: Helen Yates, chief executive of the Multiple Sclerosis Resource Centre (MSRC), is also cautious about Internet personal stories (No mention of extreme cases, only to be cautious about internet personal stories). Second expert (Gilhooly) says: He further guards against taking too much notice of extreme examples of patient recoveries (He does only refer to extreme cases). My proposal includes both recommendations and therefore is more closer to the source, yours only Gilhooly's and therefore is non NPOV.--Garrondo (talk) 15:15, 18 October 2010 (UTC)

Side note: once again you assume bad faith and accuse me of deliberated bias. I am really tired of how you treat other editors (at least me): I would rather prefer if you ommited your personal views about me and my editing. --Garrondo (talk) 15:21, 18 October 2010 (UTC)

I would, but you again deliberatly picked arguments contra and ignored an argument pro (about trusting stories from those whom one personally knows) that was right between them. It is a biased view. Sergei Gutnikov (talk) 15:25, 18 October 2010 (UTC)

It is not biased: source does not say that stories that come from those you know are a more valid scientific evidence, only that the author has the opinion after seeing a single case that personal stories from those that are closer are easier to believe: But the thing is that placebo effect affects both those you know and unknown people so the fact that a friend says he has improve is still no scientific evidence of the efficacy.--Garrondo (talk) 06:58, 19 October 2010 (UTC)

Problems

We said "and a later study found similar distribution of venous reflux in both patients with multiple sclerosis and normal controls." and referenced it to this paper which said "In conclusion, we found no evidence confirming the suggested vascular multiple sclerosis hypothesis." PMID: 20695018

What we had was the exact opposite of the papers conclusions... Doc James (talk · contribs · email) 19:03, 15 October 2010 (UTC)

Please note that that paper looked only at relapsing-remitting vs normal. LeadSongDog come howl! 19:50, 15 October 2010 (UTC)

That was not my point. My concern was we were using a paper to support exactly the opposite of its conclusions.Doc James (talk · contribs · email) 20:35, 15 October 2010 (UTC)

That was bad wording indeed. "Similar" was supposed to mean "no difference between patients and controls", but one might understand it as "similar to what Zamboni found". I've re-written it in a more straightforward way. Sergei Gutnikov (talk) 11:29, 16 October 2010 (UTC)

Ah yes you could read it that way too. Doc James (talk · contribs · email) 14:32, 16 October 2010 (UTC)

A great example of how vulnerable is human language.... :-) --Garrondo (talk) 06:18, 18 October 2010 (UTC)

Non content discussion

I move some non-content related comments to a separate section.--Garrondo (talk) 07:20, 20 October 2010 (UTC)

Moreover: re-reading the source the summary of the whole MD article states "Liberation procedure’ treatment for narrowing of veins in the neck for multiple sclerosis patients begins later this month as experts caution against Internet personal stories of ‘miracle cures’". We should use that same wording from the WebMD article since it is the journalist conclussion from the article taking into consideration the two people interviewed (secondary evidence versus the two primary opinions).--Garrondo (talk) 07:06, 19 October 2010 (UTC)

That said regarding content: I also feel that your (very) strong point of view may be related to specifically this: having a relative going through the procedure. It may be clouding your imparciality, good faith, and respect. Different editors have already said that they did not like your editing style and that you had a COI which made really hard working with you. While I first thought that you had your (strong)POV but we could still collaborate I am beginning to think that they were right and you are not capable of working with anybody who does not share your views. At least that is what you show every time you make personal comments and attacks, accusations of bad faith and cabalism, or reverts without discussion in talk page. If you are not capable of improving your editing style in CCSVI and MS related articles, you may better edit any other of the 3 m articles in WP. If you continue with your uncivility I may be forced to seek further measures.--Garrondo (talk) 06:58, 19 October 2010 (UTC)

I think that this edit comment clearly steps over the line to incivility. Such wording doesn't belong in edit summaries, irrespective of whether it is correct. Perhaps these two editors should agree to voluntarily adopt the wp:1RR with regards this article.LeadSongDog come howl! 17:37, 19 October 2010 (UTC)

Uncivility in Sergei comments is the rule more than the exception. You can find many examples. Additionally he was asked several times to debate in talk page instead of eliminating sourced text and one day later after reverting my edits he has not made a single comment here.--Garrondo (talk) 06:15, 20 October 2010 (UTC)

Sorry but I have to say, no one can claim the article. I agree on Sergei we should avoid bias and add information on the subject. When talked about "Placebo" thats the direction we don't want to take. It is not valid for this article, it is part of the defence of scientists. And therefore it realy breaks all rules! So don't focus on pro's and cons, but only add the information that is out there. We don't have to agree on the scientific opinions. Thats not our role. Stick to rules WP is providing. But don't, I repeat, don't discriminate what is wrong or what is right. We are NOT the scientists. As I already proved by OR (of myself :-) ) I can counter easily the Ferretin research. My OR is not allowed, nor my opinion, nor is it allowed to have Facebook article links on WP. Therefore the opinion of researcher can be added, if, and only if, you also add the other opinions out there. Else for the time being we have to remove the stuff, and other scientists can doe their job first. And we report the status of their findings. Alphons1968 (talk) 12:18, 20 October 2010 (UTC)

I would agree to a 1RR or 0RR since it will force discussion to move to talk page, instead of editors making revertions without commenting at talk page.--Garrondo (talk) 07:18, 20 October 2010 (UTC)

Media section

I have found two new references on the effect of media which have led me to do major changes in the section: title change to media (or media impact), moving a paragraph from reception here, including other negative and positive effects from media coverage, adding placebo effect as a possible explanation, etc.--Garrondo (talk) 11:49, 19 October 2010 (UTC)

None of the claims made are "medical" since none of them refer to the disease but to social behaviors of sufferers. References are valid and nevertheless the place for discussion is here. I won't be able to further edit today but correct behavior would be to leave edits since are referenced and AT MOST tag them as controversial and discuss it here.--Garrondo (talk) 12:56, 19 October 2010 (UTC)

Synthesis? I do not understand why Galassi, please expand your reasoning here. --Garrondo (talk) 12:58, 19 October 2010 (UTC)

I think, the whole section should be re-written as to show the reader what is the media coverage, not what is a collection of selected arguments supporting Garrondo's personal critical view on CCSVI treatment. Sergei Gutnikov (talk) 13:40, 19 October 2010 (UTC)

Have you noticed that I have also added positive effects of media coverage? Have you also noticed that it is not only me the one that thinks that you are quite uncivil towards me? ...Instead of making such general comments please make proposals here which are sourced and we can discuss them. Mines are, and are supported not only by specific sentences in articles but also by the summaries and titles of the article which would indicate that they are not "selected arguments to support my personal critical view on CCSVI treatment".--Garrondo (talk) 06:31, 20 October 2010 (UTC)

Regarding placebo effect: I have added a source from the Alberta Health Service which supports the possibility of placebo effect in addition to the newspaper: A reliable medical source.--Garrondo (talk) 07:00, 20 October 2010 (UTC)

I have also added another news piece specifically centred in placebo concerns from experts on CCSVI improvements.--Garrondo (talk) 07:05, 20 October 2010 (UTC)

Garrondo, please remove all references to newspaper articles and leaflets regarding placebo effect. It has not been proven. This is a medical issue and should follow WP:MEDRS, namely to use peer-reviewed sources. If you insist on inclusion of these newspaper articles, you would also have to include (or don't delete included by others) references to newspaper articles about success stories in order not to be biased. I don't think you want this and I do not suggest to do that either. Sergei Gutnikov (talk) 12:51, 20 October 2010 (UTC)

From MEDRS: Statements and information from reputable major medical and scientific bodies may be valuable encyclopedic sources. These bodies include the U.S. National Academies (including the Institute of Medicine and the National Academy of Sciences), the British National Health Service, the U.S. National Institutes of Health and Centers for Disease Control and Prevention, and the World Health Organization. The reliability of these sources range from formal scientific reports, which can be the equal of the best reviews published in medical journals, through public guides and service announcements, which have the advantage of being freely readable but are generally less authoritative than the underlying medical literature. the Alberta Health Service is a reputable major medical and scientific body. Last sentence says that public guides and service announcements, which have the advantage of being freely readable but are generally less authoritative than the underlying medical literature. Less does not mean not authoritative, it only means that if a more authorithative source contradicts the less authoritative we should follow the better one. If you find a more authorithative source stating that CCSVI personal stories from internet can not be influenced by placebo effect I would have no problem in eliminating the sentence. On the other hand, is there any reason to think that that as opposed to anecdotal evidence in general, which can be influenced by placebo, CCSVI stories can not? Strong claims need strong references, and the opposite is also true: no scientist will doubt that this bias is possible (which does not mean that it is necessarily present), and therefore they will hardly even believe it is relevant to publish it. We have 3 newspapers saying it is a possibility, acting as secondary sources as they quote experts, and even reviewing that specific Alberta communication (which would indicate its importance), in addition to a secondary source (even if directed to patients) by a scientific body. What else do you need?. Nevertheless we can go to the reliable source noticeboard or medicine project to discuss if source is enough or stronger sourcing is needed if you feel it is neccesary.--Garrondo (talk) 13:12, 20 October 2010 (UTC)

Wikipedia (not I!) needs balance, not bias. Placebo effect is not confirmed for CCSVI treatment. Moreover, there is a fundamental inner contradiction in your logic. Placebo effect is a positive effect, not an absence of any effect! Thereby, first you have to clearly and unequivocally state and show a reference to the imporvement after CCSVI treatment. Sergei Gutnikov (talk) 13:42, 20 October 2010 (UTC)

None of the sources say that placebo is proven (nor do I): only that it is possible (and plausible) and as such is worded in the article (that placebo effect can be at the origin of the positive feedback), but such possibility, since it is explicitally stated in different reliable sources is a relevant one and therefore should stay in the article. --Garrondo (talk) 13:54, 20 October 2010 (UTC)

Moreover: we clearly and unequivocally state and show a reference to the imporvement after CCSVI treatment: we say: show their improvements on social media websites such as YouTube. (and it is referenced). That there are many videos showing improvements is a fact and as such is worded. However it is also true that different sources have given alternative explanations to a direct effect of the procedure and as such it also should be included.--Garrondo (talk) 14:03, 20 October 2010 (UTC)

The above exchange seems to suffer from a deficit of clarity. The assertion "Placebo effect is not confirmed for CCSVI treatment" is so terse as to be meaningless. Is the intent that "There is no confirmation that the placebo effect is a treatment for CCSVI", "There is no confirmation that CCSVI is affected by placebo treatment", "There is no confirmation that the 'liberation treatment' for CCSVI is more effective than placebo" or some other? LeadSongDog come howl! 19:45, 20 October 2010 (UTC)

It has not been confirmed by any study/clinical trial that the reported improvements after CCSVI treatment can be attributed solely or partially to the placebo effect. However, in this Media section, placebo effect can be mentioned for as long as it is discussed in the media. Sergei Gutnikov (talk) 20:37, 20 October 2010 (UTC)

Thank you, that clarifies your meaning, and of course the statement is literally correct. No good clinical trial report ever says "effect Ex of treatment Tx can be attributed solely to the placebo effect". At most a trial will say something along the lines of "the probability that effect Ey is associated with treatment Ty is not significantly greater than its association with placebo treatment Tp". But in any case, until there has actually been a placebo-controlled double blind trial conducted, the wording of trial reports is pure speculation. LeadSongDog come howl! 22:14, 20 October 2010 (UTC)

Already pointed above that the article does not say that it has been proved, only that it has been proposed as a possibility: it has been proposed as a possible explanation because placebo effect is inherent to anecdotal evidence in general (the possibility of being there, not the mandatoriness of being there).--Garrondo (talk) 06:25, 21 October 2010 (UTC)

Volume of these evidences is big

I believe the sentence but the volume of these evidences is big is quite redundant since we have already stated that there are many of these cases in internet. I would rather add the citation to the first sentence which I believe says the same with different words. Thoughts?--Garrondo (talk) 19:40, 20 October 2010 (UTC)

It is not redundant. First. comes the fact - "many patients report". Then, the importance of this fact is refuted - "its only anecdotal evidence". Therefore, for balance, another reference is added which states that anecdotal evidence is significant in volume (and hence cannot be bluntly ignored). Sergei Gutnikov (talk) 20:37, 20 October 2010 (UTC)

I eliminated yesterday the "only" so we do not judge importance: many patients is a fact, that it is anecdotal evidence is also a fact (no judgement in it, only reality, anecdotal evidence has a value and also many limitations by definition). Right now we are saying something like: many patients say something, this something is anecdotal evidence, we have many somethings. It is obvious and redundtant: if we have many patients showing an improvement and that improvement is anecdotal evidences then mandatorily there has to be a big volume of anecdotal evidences since we have many patients showing their improvement. Nevertheless I will not make an issue of this but as far as I see it is simply bad writing combined with a pinch of POV pushing. Does anybody else have an opinion?--Garrondo (talk) 06:25, 21 October 2010 (UTC)

Any editors willing to comment? Anybody there?--Garrondo (talk) 20:58, 25 October 2010 (UTC)

Redundant or not, "the volume of these evidences is big" is bad English. It would be better English to say there is a large volume of such evidence" or "there are many such case reports" instead. LeadSongDog come howl! 21:18, 25 October 2010 (UTC)

Precisely my point: to say "there are many such case reports" is exactly the first sentence of the paragraph.--Garrondo (talk) 06:44, 26 October 2010 (UTC)

The plural of "evidence" is ambiguous, you can see "evidences" in the titles of published books. But for this article it doesn't matter. Sergei Gutnikov (talk) 18:50, 26 October 2010 (UTC)

We can find all kinds of odd usage, but "evidences" used as a plural noun is jarring to read where "evidence" is not, most likely because it causes the reader to ask if the "s" signifies that the word is being used as a verb synonymous with "signifies" or "indicates". LeadSongDog come howl! 19:49, 26 October 2010 (UTC)

Sorry to jump in like this as I am aware that this has long been a very difficult article for all involved. Feeling that LSD was clearly correct to state that "evidences" does not read well at all, I was going to make that comment. However I did check the reference as well. I read it several times and I do not feel that it backs up the statement in the first place, and I deleted it. Gandydancer (talk) 21:29, 26 October 2010 (UTC)

It is there - "There is a lot of anecdotal evidence to support this treatment" - and I re-instated it. Also "Plenty of" is a word from the cited source, although "many" sounds better and, probably, should be used. Sergei Gutnikov (talk) 20:44, 27 October 2010 (UTC)

How many times has the procedure been done and how many people have reported that it helped them? There are say 30 (just a guess, I did not count them) videos on youtube - where else can I find reports? Gandydancer (talk) 00:01, 28 October 2010 (UTC)

Of course we have no idea how many were or were not helped, because those people who were not helped could choose not to post videos telling their stories. It could be 30 out of 31, or it could be 30 out of 3000. That is why people argue that these procedures should only be done within controlled trials until we get some meaningful data. There are three such presently listed as recruiting on ClinicalTrials.gov, numbers NCT01205633, NCT01201707 and NCT01089686. No doubt these will learn something, but we don't have a wp:CRYSTAL ball. LeadSongDog come howl! 03:32, 28 October 2010 (UTC)

To Gandydancer: 30 or more is not so important, as well as the denominator is not so important either. Don't forget, that MS is otherwise an incurable disease, therefore, for some patients, the existence of even a 1% chance of improvement or halting the progress of the disease is life saving. It gives them hope, alleviates their depression and may even save them from suicide. Sergei Gutnikov (talk) 09:37, 28 October 2010 (UTC)

Which is completely irrelevant for Wikipedia. We are not writing for patients.--Garrondo (talk) 10:14, 28 October 2010 (UTC)

Really? Who do you think you are writing for, then? Sergei Gutnikov (talk) 11:09, 28 October 2010 (UTC)

We write an encyclopedia, which by definition is for anybody... Writing style would be completely different if it was solely for patients. If you do not have that clear as an editor then you do have a COI. Take a look at what wikipedia is and what it is not and specially to WP:NOTADVOCATE. It is even more specifically described in the medicine manual of style (see: Writing for the wrong audience). Regarding your specific question about whom may read it: 1-Not many people (11834 in September compared to the 360545 of multiple sclerosis). 2-Anybody such as: people that have read news on CCSVI in their local newspaper and are interested, physicians, medical students, medical researchers, social researchers, patients, their families, journalists who have to write about CCSVI, me (I am not in any of those groups), anybody who reads the ms article and finds the concept of interest, and probably many others...--Garrondo (talk) 11:33, 28 October 2010 (UTC)

Thank you, LeadSongDog, for citing the trials. I think, this information should be added to the article. It will give an indication when the first confirmed information will be available. Sergei Gutnikov (talk) 09:27, 28 October 2010 (UTC)

On trials from WP:MEDMOS: Research directions: Include only if addressed by significant sources. See Trivia, and avoid useless statements like "More research is needed". Wikipedia is not a directory of clinical trials or researchers.: I would say that ClinicalTrials.gov is not a significant source since there is no editorial review; you simply have to make your entry that you are running a trial; and as with any other subject there will be notable and un-notable trials. I would say that sources for significance should be other than clinicaltrials.gov.--Garrondo (talk) 10:21, 28 October 2010 (UTC)

Regarding plenty or many: I believe both are synonyms and I do not feel it changes meaning to have one or the other. Regarding number of evidence: it does not really matter how many since different sources state that there are many and we are not to discuss it. Regarding controverted sentence I am tired of saying that to say that there are many cases out there and that there are a lot of anecdotal evidence is exactly the same: we have different sources which more or less state the same: (many cases) with different wordings (including the one by Sergei) and to include two sentences with the same meaning is to give undue weight. Sergei for the moment has not explained why he believes they are different.--Garrondo (talk) 06:18, 28 October 2010 (UTC)

For Garrondo: "many" is a relative word, it depends on the context. Is three "many"? Three hairs on a head are not many, three hairs in a bowl of soup are many. Therefore, "the large volume of evidence" describes the situation more accurately. Sergei Gutnikov (talk) 09:27, 28 October 2010 (UTC)

Do not see your semantic point: however I would not mind changing it to a single sentence which could be "A large volume of patients who have had the surgical procedure show their improvements on social media websites such as YouTube.[33] Such stories are anecdotal evidence of efficacy.[33] It has been pointed out... Meaning does not change.--Garrondo (talk) 10:14, 28 October 2010 (UTC)

It does change. "Large volume of patients" is not good English. And it is not the same as a "large volume of evidence". You again are trying to diminish the importance of this evidence. Sergei Gutnikov (talk) 11:05, 28 October 2010 (UTC)

I will not push this issue further: I am really tired of discussing for a single sentence.--Garrondo (talk) 11:37, 28 October 2010 (UTC)

OK, I have reverted Sergei's edit and let the chips fall where they may. I use the word "many" because it is more encyclopedic than "plenty of", which would more likely be used in casual conversation. As for the evidence part, one small clinic in Scotland and one obscure physician does NOT have the authority to state that there is a great deal of anecdotal evidence. If this information is included in the article it must be attributed to this particular physician. Even the man that "invented" the procedure states that not enough procedures have as yet been done to pronounce the procedure successful, so obviously it is not yet possible to have a great deal of evidence either for or against the procedure. Gandydancer (talk) 19:09, 28 October 2010 (UTC)

Thinking further on this, I have changed "many" to "some". With 85,000 to 100,000 with MS in the UK alone and an unknown number of procedures done with say 30 on youtube, how could the article state that "many" have reported their outcome on youtube? I am certainly open to argument on my edits, however this seems to make sense to me. BTW, just for the record it is my impression that the procedure has been of benefit to at least some people and that any adult that would like to have the proceure should be "allowed" to do so. From what I have read so far, I tend to think that if I had MS I would be extremely interested... However, I DO NOT want any wikipedia editors to feel that they need to paint a very rosy picture of the procedure for me - I just want the facts. As has been pointed out, this is an encyclopedia. Gandydancer (talk) 19:39, 28 October 2010 (UTC)

Regarding your first comment: I agree with you: since the ref is attributing such comment to a specific expert it would be better to say so. However I have first reverted your editions: This has been a very controversial article, and it would be better to hear other editor's opinions. Regarding your second comment: Sources say plenty in social media including youtube, so no matter what we feel we should say so, and not decide that we think that there are only few and change sources. There are many other social media in addition to youtube: blogs, CCSVI-sites, but that is quite irrelevant, since the only thing we have to do is follow sources.--Garrondo (talk) 19:49, 28 October 2010 (UTC)

BTW, is "Boots Web Med" even an acceptable source? It looks like an online pharmacy to me..Gandydancer (talk) 19:47, 28 October 2010 (UTC)

For a medical claim probably not, for a news claim in the media subsection of the society section probably to back up a non-medical claim probably yes. Would be similar to a newspaper.--Garrondo (talk) 19:51, 28 October 2010 (UTC)

Research directions

Further to the above, as far as I can tell ClinicalTrials.gov is the best available source of its kind for the documentation of ongoing trials, and we've certainly used it elsewhere. I'll raise the question at Wikipedia talk:WikiProject Medicine for other opinions, but I'd certainly be interested in knowing of any comparable or better sources for such information. LeadSongDog come howl! 17:17, 28 October 2010 (UTC)

I am not very sure on the issue, but as far as I know it is only a collection of ongoing trials filled by the researchers themselves. I suppose that it is reliable to know ongoing trials, but not so sure about their notability: I would definitely not use it to back up the creation of an article for a given trial, but not completely sure if it is reasonable to use it here. I will be waiting comments from the meds people.--Garrondo (talk) 17:39, 28 October 2010 (UTC)

Should we consider CCSVI related to Cerebral Venous Outflow Impairment?

Other research groups different from Zamboni have found jugular reflux and correlations with other neurological diseases. In particular Transient Global Amnesia [1], [2] and Leukoaraiosis [3].

I admit that they do not speak about exactly the same, but the problem of jugular reflux is present in both cases, and this article has becomed too much centered in MS, instead of the venous problem CCSVI.

My question is, Should we make a quote here about this other condition Cerebral Venous Outflow Impairment? --Juansempere (talk) 00:31, 30 October 2010 (UTC)

Not referred to as CCSVI thus inappropriate for this page as off topic. Doc James (talk · contribs · email) 00:33, 30 October 2010 (UTC)

We should not unless somebody explicitally makes that relationship in a reliable source.--Garrondo (talk) 07:25, 2 November 2010 (UTC)

A separate article Jugular venous reflux can be written to accommodate these and link to the CCSVI in "See also". Sergei Gutnikov (talk) 14:09, 2 November 2010 (UTC)

The see also section should also follow WP policies, and the inclusion of the see also (which is for related topics) is as much OR as specifically saying so in the body of the article.--Garrondo (talk) 07:29, 3 November 2010 (UTC)

I have crossed out my comment, since jugular venous reflux has been related to CCSVI in sources (it is one of the diagnostic criteria). Even so I doubt that it makes sense to create an article on such a specific topic. Probably much more sensible to include it as a subsection in a wider topic (Similar to "venous reflux", which does not exist).--Garrondo (talk) 12:55, 3 November 2010 (UTC)

In a fast check of the relevance of the concept (typing jugular venous reflux in pubmed) gives me only 4 reviews and as far as I see none fully related.--Garrondo (talk) 12:58, 3 November 2010 (UTC)

Maybe this is a little out of topic here, but on 28 September 2010, Jmh649 removed a link to jugular venous pressure in the section "see also" saying that it is not sure that is related to this article. I think that is clearly related, and besides, I would say that the content of that article would be interesting for any reader of this article. What is your opinion about reintroducing the link?--Juansempere (talk) 22:33, 10 November 2010 (UTC)

It is relevant and might well deserve to be mentioned in the text of the CCSVI article. By all means there is no harm to add a link to jugular venous pressure to the "See also" section. Sergei Gutnikov (talk) 02:28, 11 November 2010 (UTC)

See also section are not recommended per here WP:MEDMOS. Wikipedia is not a collection of links. BTW do we have a paper saying that people with CCSVI have elevated JVPs? We have lots of great articles but they need to be directly related. Doc James (talk · contribs · email) 20:12, 13 November 2010 (UTC)

WP:MEDMOS recommends: "See also: Avoid when possible; use wikilinks in the main article". So, Juansempere, if you want to add jugular venous pressure, it is recommended to be in the narrative text of the article, with relevance showed and referenced. Sergei Gutnikov (talk) 20:57, 14 November 2010 (UTC)

CTV News

I'm not sure how to put this, but here goes: At 8:18 EST this morning, the CTV News Morning program aired a story on CCSVI which included an interview with a very convincing gentleman saying how much his "liberation therapy" in Syracuse, New York had helped him, and saying a Polish centre was approaching 600 interventions with a "point zero two percent" rate of complications. They gave no indication of how he was selected to appear on the show, but the very next commercial break, at 8:20, included an advertisment for a medical tourism company (which I shall not name). Such ads are not at all common on the CTV News network, and the juxtaposition cannot credibly be considered a coincidence. Either their editorial independence was compromised, or someone in their advertising sales department knew about the interview and placed/sold the advertising opportunity very quickly. Good business. Bad journalism. I'm revising my opinion of this program further downward. LeadSongDog come howl! 14:22, 10 November 2010 (UTC)

Another great example of why people should not watch TV. --Doc James (talk · contribs · email) 20:11, 13 November 2010 (UTC)

And people always think that physicians are the only ones with COIs...--Garrondo (talk) 08:12, 14 November 2010 (UTC)

Primary research

A bunch of primary research is being added to this article. We need to follow WP:MEDRS and remove primary research.--Doc James (talk · contribs · email) 23:41, 17 November 2010 (UTC)

I agree with Doc James that recently (this month) there have been some interesting reviews (See below) that could be used to balance the article and summarize positions among the scientific community. Nevertheless it may still be too soon to eliminate all primary research from the article, since most of it is posterior to these reviews. --Garrondo (talk) 18:01, 18 November 2010 (UTC)

Some recent primary research

Looking for secondary sources I have found another recent primary article against Zamboni's findings:

• Yamout B (2010 Nov). "Extracranial venous stenosis is an unlikely cause of multiple sclerosis". Mult Scler. 16 (11): 1341–8. PMID 21041329. {{cite journal}}: Check date values in: |date= (help)

--Garrondo (talk) 17:16, 18 November 2010 (UTC)

The operative term there is unlikely "cause" of MS. The finding of CVS in 12/13 of the late MS subgroup vs 7/29 in the early MS subgroup, if this primary result is corroborated, will demand some explanation. Even if it is not the cause, it could be a direct or indirect consequence of MS. LeadSongDog come howl! 20:28, 18 November 2010 (UTC)

Deaths

This article does not yet mention those people who have died from this surgery and its complications. Here is one case detailed in a reliable news source - Ont. man dies after MS vein opening. - Ahunt (talk) 00:39, 19 November 2010 (UTC)

Further news coverage here and here.LeadSongDog come howl! 09:32, 19 November 2010 (UTC)

Recent news reports seem to indicate that about four or five people have died from the procedure or complications from it. I think this is germane to the article. I'll see if refs for all of them can be found. - Ahunt (talk) 13:00, 19 November 2010 (UTC)

Here is a report on one death and one emergency open heart surgery following CCSVI surgery, both done as Stanford. CCSVI Treatments Halted at Stanford After Two “Adverse Events”. The writer is a PhD epidemiologist who has MS. This BC backgrounder also backs up two deaths already mentioned. - Ahunt (talk) 13:41, 19 November 2010 (UTC)

I have added this in - the article does seem to touch on these deaths, although as the number increases over time this may need to be made a separate section. - Ahunt (talk) 13:54, 19 November 2010 (UTC)

Four of five deaths? To the best of my knowledge there have been two, including this month report, thanks to Ahunt for reference. Compare it to ~2000 deaths every year in the USA only from plastic surgery[4] - operations performed on perfectly healthy people. Sergei Gutnikov (talk) 03:30, 21 November 2010 (UTC)

There have been a couple more reported in the media, but I am still looking for the refs - much easier to add them as the events happen than go back and try to find them later. - Ahunt (talk) 13:28, 21 November 2010 (UTC)

I believe that giving all those specifics in the death cases unless supported by a secondary source is probably excessive weight to primary sources. Moreover, it does not add any information to the CCSVI concept to now the country of origin of the patient or the country of death. I would summarize all the paragraph to: Rare but serious adverse events have been reported when using stents. At least three patients have died due to complications of the procedure. Some United States hospitals....--Garrondo (talk) 11:08, 21 November 2010 (UTC)

I agree, but I think we should keep an overall count of the deaths and retain the refs for each one as, due to the nature of the deaths from migrating stints and blood clots, it is likely that there will be more in the future. - Ahunt (talk) 13:28, 21 November 2010 (UTC)

Agreed.--Garrondo (talk) 16:29, 21 November 2010 (UTC)

Done.--Garrondo (talk) 18:13, 21 November 2010 (UTC)

After summarizing the info Sergei has added that both patients were on anticoagulants. I have partially reverted it leaving it as: Two patients have died due to postoperative complications. Adding the fact that they were on anticoagulants is irrelevant and misleading: Adding the anticoagualants info is misleading since it is used to imply that CCSVI procedure is safe, since they died due to "other" problems (taking anticoagulants), however taking anticouagulants after surgery is inherent to the procedure so the fact is that they died due to complications of CCSVI surgery.--Garrondo (talk) 07:50, 22 November 2010 (UTC)

Both deaths are related to use of anticoagulants (that's the fact), possibly due to inadequate choice of drug/dose (not known). Garrondo suggests to hide this fact and this is misleading. Facts should not be distorted in Wikipedia. Sergei Gutnikov (talk) 09:13, 22 November 2010 (UTC)

The fact is that they died after a CCSVI procedure... if they had not had it they would be alive. The procedure does not end the moment the surgeon closes the wound. I hope somebody else comments.--Garrondo (talk) 13:23, 22 November 2010 (UTC)

If some dies after a procedure being done electively they have died from the procedure. For example if someone has hip surgery and is put on anticoagulation post surgery and dies. They have still died from complications of hip surgery. Doc James (talk · contribs · email) 13:55, 22 November 2010 (UTC)

This article is about CCSVI. By now there is not any approved treatment for this vascular condition as far as I know. Any information about dangers of angioplasties should be included in the article angioplasty because CCSVI is not officially related with this concept. For the same reason, problems with stents should be included in stent. --Juansempere (talk) 16:34, 22 November 2010 (UTC)

If to follow this logic (this is an article about CCSVI, not angioplasty) then information of deaths is not relevant, especially when taken from non-medical sources. Any complications should be referred to venous angioplasty in general. Sergei Gutnikov (talk) 18:24, 22 November 2010 (UTC)

How often does someone die from being offered their first cigarette? While the "True" answer might be in the millions of times each year, that's not what anyone writes on a death certificate. Proximate causes get listed more reliably than indirect ones for obvious reasons. Either re-stenosis or clotting could have been addressed by other interventions or other dosages of the same intervention. We have no source AFAIK which reliably determines what was the last clear chance (as lawyers would say) to save each patient. LeadSongDog come howl! 22:39, 22 November 2010 (UTC)

The same source states: "A blood clot in the vein might be more dangerous to fix than to leave alone".[5] Now, someone may say "That's not relevant as the source is a newspaper and hence it is not credible by WP:MEDRS rules." True, but in that case, the same source is not credible in linking this death to CCSVI and we come back to only one death reported in credible sources, hence only one death should be mentioned in the Wikipedia article. Sergei Gutnikov (talk) 23:12, 22 November 2010 (UTC)

To say that a patient died from complications from a procedure needs much less specific sourcing that to say which specific complication was at the origin of the death or if it could have been fixed. Also: blood clots are complications of the procedure, the patient died from a blood clot: the patient died due to a complication of the procedure, and that is a fact. Regarding side effects not in this article: sources (both medical and media) believe that it is important to note that there have been important secondary effects, including deaths, when using angyoplasty for CCSVI, when they do not report every death of angioplasty, so it is relevant to have it in the article. --Garrondo (talk) 08:04, 23 November 2010 (UTC)

A primary article on the safety of the surgical procedures: Phlebology. 2010;25(6):286-95. Endovascular treatment for chronic cerebrospinal venous insufficiency: is the procedure safe? Ludyga T, Kazibudzki M, Simka M, Hartel M, Swierad M, Piegza J, Latacz P, Sedlak L, Tochowicz M. PMID 21107001

I think any reference to deaths also acknowledge follow-up care, if it's relevant to any of the deaths being referred to. In the case of Mahir Mostic, referred to in one of the articles above, the issue of follow-up care was raised. I'm not commenting on what should or should not be done, just that some of the risk involved, at least in Canada, is tied into the level of follow-up care health tourism patients receive when returning to Canada. That's a whole debate on its own but it's tied to the risk. This isn't limited to Mostic but the Mostic article is enough to establish the issue, unless a second source is needed for confirmation.142.163.128.25 (talk) 14:23, 30 November 2010 (UTC)

Regarding the death of Ms. Mostic, it's important to point out that the doctors treating his blood clot chose to manually break up the clot which is not a generally accepted method. It was the action of manually breaking up the clot that caused his death, rather than dissolving it using blood thinners. Andisue50 (talk) 14:32, 11 December 2010 (UTC) andisue50

A great review

[6] Doc James (talk · contribs · email) 11:02, 26 December 2010 (UTC)

Reviews

• Oger J, Alkhajawah M (2010). "CCSVI: hope, hype or snake oil?". Can J Neurol Sci. 37 (6): 716. ISSN 0317-1671. PMID 21059529. {{cite journal}}: Unknown parameter |month= ignored (help)
• Weir B (2010). "Multiple sclerosis - a vascular etiology?". Can J Neurol Sci. 37 (6): 745–56. PMID 21059535. {{cite journal}}: Unknown parameter |month= ignored (help)

--Doc James (talk · contribs · email) 23:58, 17 November 2010 (UTC)

Added links. Both show as "Journal article" not "Review" in pubmed data, though the entries are still in their data-review process. I don't have access to the articles themselves, are they clearly reviews? LeadSongDog come howl! 17:08, 18 November 2010 (UTC)--

The second on is. The first is a commentary. Doc James (talk · contribs · email) 17:40, 18 November 2010 (UTC)

Another recent review not cited in article: Garrondo (talk) 17:36, 18 November 2010 (UTC)

• Rudick RA (2010 Sep). "Multiple sclerosis: Is multiple sclerosis caused by venous insufficiency?". Nat Rev Neurol. 6 (9): 472–4. PMID 20811464. {{cite journal}}: Check date values in: |date= (help) --Garrondo (talk) 17:13, 18 November 2010 (UTC)

More (not yet in pubmed, but has a DOI):

• Howard Dorne. "Chronic cerebrospinal venous insufficiency and the doubtful promise of an endovascular treatment for multiple sclerosis". J NeuroIntervent Surg. doi:10.1136/jnis.2010.003947. {{cite journal}}: |format= requires |url= (help)

And one more:

• Cortes Nino Mdel P, Tampieri D, Melançon D (2010 Jul). "Endovascular venous procedures for multiple sclerosis?". Mult Scler. 16 (7): 771–2. PMID 20621950. {{cite journal}}: Check date values in: |date= (help)CS1 maint: multiple names: authors list (link) (primary source?)

It is not a primary source: it is an invited commentary. (See comment on it from the editors of the journal) The authors give their opinion on the usefulness and dangers of venous procedures taking into account previous primary sources.--Garrondo (talk) 20:49, 18 November 2010 (UTC)

A Medscape piece: Susan Jeffrey (17 November 2010). "CCSVI in Focus at ECTRIMS: New Data but Still Little Clarity". Medscape Medical News > Neurology. While this is not a review per MEDRS, it contains some attributed direct quotes of interest that might be useful, e.g. Zamboni: "It is unethical to charge for an experimental procedure". It also lists seven different epidemiology studies underway in North America. LeadSongDog come howl! 21:30, 22 November 2010 (UTC)

I would say that it is a review by an expert, since it reviews very different studies and positions and she is clearly an expert, although it is not peer-reviewed. It is probably above primary studies and media reports and below peer-reviewed reviews. Still it could be quite useful.--Garrondo (talk) 08:17, 23 November 2010 (UTC)

Review by Zamboni:

• Phlebology. 2010;25(6):269-79. The chronic cerebrospinal venous insufficiency syndrome. PMID 21106999

Another review: Neurol Sci. 2010 Dec 15. [Epub ahead of print] Chronic cerebro-spinal venous insufficiency (CCSVI) and multiple sclerosis. PMID 21161309 — Preceding unsigned comment added by Garrondo (talk • contribs) 02:23, 21 December 2010

Those are

• Zamboni P, Galeotti, R (2010 Dec). "The chronic cerebrospinal venous insufficiency syndrome". Phlebology. 25 (6): 269–79. doi:10.1258/phleb.2010.009083. PMID 21106999. {{cite journal}}: Check date values in: |date= (help)CS1 maint: multiple names: authors list (link)
• Ghezzi A, Comi G, Federico A (2010 Dec 15). "Chronic cerebro-spinal venous insufficiency (CCSVI) and multiple sclerosis". Neurol Sci. doi:10.1007/s10072-010-0458-3. PMID 21161309. {{cite journal}}: Check date values in: |date= (help)CS1 maint: multiple names: authors list (link).

The journal publisher's submitted Pubmed data doesn't show either as a review, but the abstracts seems to indicate that both are. I haven't seen the actual articles yet. Either way I'd suggest we wait for final publication to make the callLeadSongDog come howl! 14:11, 21 December 2010 (UTC)

I do not have access to the Zamboni's one. The other is classified as a review by the journal.--Garrondo (talk) 14:31, 21 December 2010 (UTC)

The two editorials below may be relevant to this article. My own minor modifications to this article were limited to mainstream controversy and media coverage as that was general knowledge, but I'll leave it to others to determine the usefulness of the editorials below and, if useful, how to use the information to improve the article.

• Behan, Peter O. "Futility of the autoimmune orthodoxy in multiple sclerosis research". Expert Rev. Neurother. 10(7), 1023–1025 (2010). http://www.expert-reviews.com/doi/pdf/10.1586/ern.10.69

• Haacke, E. Mark. "Chronic cerebral spinal venous insufficiency in multiple sclerosis". Expert Rev. Neurother. 11(1), 5–9 (2011). http://www.expert-reviews.com/doi/pdf/10.1586/ern.10.174

There was some mention of Haacke on an archived talk page. I didn't check to see if it was the same author.

In any case, I believe both are peer-reviewed. 142.163.152.138 (talk) 23:10, 2 January 2011 (UTC)

Thanks for the two refs. Let me point however that editorials are rarely peer-reviewed. They are usually only editorially reviewed pieces from experts. In a quality of sources classification I usually locate them in middle ground between primary sources and peer-reviewed reviews. Secondly I also have to comment that while the second is quite relevant for the article, the first is not, since it does not mention CCSVI. Nevertheless many thanks again for your great contribution.--Garrondo (talk) 07:30, 3 January 2011 (UTC)

Statement about the cause

In the article it is written that in ECTRIMS "It was agreed that CCSVI is not the cause of MS..

I don't have access to the full article but the summary of the article says "It is urgent to perform appropriate epidemiological studies to define the possible relationship between CCSVI and MS", and third part reports that I have read state that the article says that "with the current evidence we have about CCSVI it cannot be said that a relationship exist between MS and CCSVI"

This statement is quite different from the statement of the article. If somebody has the original words, please post it here to confirm the meaning.

Juansempere (talk) 15:53, 7 January 2011 (UTC)

From the conclussions section of the review: As recently agreed in a dedicated symposium during the ECTRIMS annual congress (2010; Gothenburg, Sweden) involving some of the key researchers in the CCSVI area, including P. Zamboni and R. Zivadinov, the available information does not support the view that CCSVI is the cause of MS. I am going to change it so it follows more closely the secondary source.Bests.--Garrondo (talk) 14:06, 10 January 2011 (UTC)

Changed to "It has been agreed that it is urgent to perform appropriate epidemiological studies to define the possible relationship between CCSVI and MS, while existing data does not support CCSVI as the cause of MS." Bests.--Garrondo (talk) 18:47, 10 January 2011 (UTC)

Being a literal quote I suppose I have to accept it, but I would like to point out the ambiguous redaction of the writers. Probably they are thinking that with this redaction, they can claim priority if CCSVI is someday proven independent from MS. On the other hand, if finally a causal relationship is shown, they will easily reject their assertion saying "we only said that the evidence was not enough".

I don't know the wikipedia policy about these kind of ambiguous claims, but I think the ambiguity should be at least remarked.

--Juansempere (talk) 21:14, 10 January 2011 (UTC)

I would leave it as it is since authors of the review are supposedly quoting conclussions of the ECTRIMS congress: it is impossible to know if those were actually the concussions or their interpretion, and anyway we should not "interpret" what they interpret.--Garrondo (talk) 07:22, 11 January 2011 (UTC)

Let's bring some balance in this rather one sided article.

I would like to propose to bring some balance in this article. Anyone who remembers the paradigm shift in the understanding of ulcers and the fierce resistance from the establishment that accompanied that knows that generally accepted theories in medicine are not always right. I have contributed the link to www.ccsvi-tracking.com, as far as I know the only, be it anecdotal, large and long term record of effects of CCSVI treatment in MS patients. The reference has been removed twice. I am open to suggestions on how to introduce in this article the notion of the growing anecdotal evidence that CCSVI treatment has a significant effect on a large portion of the treated MS patients. — Preceding unsigned comment added by Kleuter (talk • contribs) 22:54, 5 March 2011 (UTC)

Take a look at WP:ELNO. That link is against such policy. When such results are published in a reliable third party source (peer reviewed journal mainly) bring the source and it may be added (even then with much care since WP should be based mainly in secondary sources).--Garrondo (talk) 07:19, 7 March 2011 (UTC)

The www.ccsvi-tracking.com is not a proper scientific publication, so a reference to it is not suitable for Wikipedia. However, I support the Kleuter's proposal that the article must be balanced. It should somehow reflect the body of anecdotal evidence, because it is important and cannot be just ignored. Sergei Gutnikov (talk) 10:55, 8 March 2011 (UTC)

Find a secondary reliable publication giving any weight to it and bring it here (or even a primary but reviewed one). Then we could talk. Until then only place for it is the society section.--Garrondo (talk) 11:58, 8 March 2011 (UTC)

Or, at least, a reviewed primary source (honorable Garrondo himself uses primary sources). Sergei Gutnikov (talk) 09:34, 9 March 2011 (UTC)

Secondary sources are required. The article is okay for balance now. We are here to reflect the science. --Doc James (talk · contribs · email) 13:58, 25 April 2011 (UTC)

Genetics study

I do not believe that mentioning the proportion of CCSVI in controls and MS patients in the genetics study recently added is relevant for the genetics section. My reasons given to Sergei are:

• We are not giving numbers of proportion of patients and controls with CCSVI for any of the studies that have appeared in 2010 and 2011. This is giving undue weight to this study: it is only one other study on proportion of CCSVI, but only serious one on genetics. Moreover to give such data in the genetics section is not relevant for that section. Please do not revert me again. but begin a discussion at talk page per the 3R rule if you still disagree.
• Moreover: I am only closely following the conclusions of the authors; who put the weight in the genetic finding and NOT in the number of cases with CCSVI in patients and controls: For example in abstract there is no mention of proportions data in the conclussions/significance section but only in genetics.

I believe that best solution is to use the source twice: one for the genetic section and also add it as another source when we name all studies with different proportion of CCSVI patients and controls.--Garrondo (talk) 16:41, 8 March 2011 (UTC)

I have no objections against moving information on proportions to a different section. Please do. But please don't delete it. However, it would be better not to move it, as in Garrondo's way it looks like the cited article entirely opposes CCSVI-MS association, which is opposite to the truth - this article actually confirms it (though illustrates that this particular gene is not involved). Sergei Gutnikov (talk) 17:41, 8 March 2011 (UTC)

Any reason for having proportions of this article and not of all the other (more than 10) articles with similar info??????????? Simply to give undue weight. On the other hand my wording (actually the wording on the conclusion of the article) does not oppose anything on the relationship but an association with an specific gene. --Garrondo (talk) 17:55, 8 March 2011 (UTC)

Moved this here. We need to base this article on review sources not primary sources and especially not for content like this.

===Genetics=== A small genetic study looked at fifteen MS patients who also had CCSVI. It found 234 specific copy number variations in the human leucocitar antigen focus. Of these, GRB2, HSPA1L and HSPA1A were found to be specifically connected to both MS and angiogenesis, TAF11 was connected to both MS and artery passage, and HLA-DQA2 was suggestive of having an implication for angiogenesis as it interacts with CD4. A study in 268 MS patients and 155 controls confirmed a significantly higher frequency of CCSVI in the MS group (56.0%) vs the controls group (21.9%, p<0.001) and also higher in the progressive MS group (69.8%) vs in the non-progressive MS group (49.5%) but found no relationship between CCSVI and HLA DRB1*1501, a genetic variation that has been consistently linked to MS.

Doc James (talk · contribs · email) 19:28, 8 March 2011 (UTC)

Primary sources are not forbidden by WP:MEDRS. Secondary sources are recommended to use where they are available. You are welcome to use references to secondary sources but please do not delete valuable and correct information from the article. Sergei Gutnikov (talk) 09:30, 9 March 2011 (UTC)

Again: ::Any reason for having proportions of this article and not of all the other (more than 10) articles with similar info? Any reason to consider that that proportion is relevant for the genetics section?--Garrondo (talk) 13:43, 9 March 2011 (UTC)

It was you who added this article but in your reduction it looked like the article does not support the CCSVI-MS link. This is incorrect. I added information from the article to correct this bias. Sergei Gutnikov (talk) 17:23, 9 March 2011 (UTC)

It does not matter who added it to this article. It is inappropriate as it is not WP:DUE.Doc James (talk · contribs · email) 18:10, 9 March 2011 (UTC)

The above has caused me to raise a proposal re MEDASSESS at Wikipedia talk:MEDRS. Your input there would be instructive, but please don't turn it into a second venue for this discussion. It's more general. LeadSongDog come howl! 21:14, 9 March 2011 (UTC)

Sergei: my problem is not with having primary sources but giving them too much weight. To add a data from a single article that 10 different articles have and which is highly debated (I am specifically referring to proportion of cases with CCSVI and MS) it is clearly giving undue weight. Up to this moment I considered a reasonable solution to say that very different sources have had different results and have the primary articles so the interested reader could go to them. You have broken that consensus by choosing selectively one of those sources and giving the numbers. Secondarily I have the problem of having a section under genetics which is clearly not genetics. Finally you say that text did not support link between CCSVI and MS as opposed to the article conclussions, however I mostly copied the conclussion of the authors in the abstract, which is what they consider their summary of the article, and what on the other hand is very specific: no relationship between CCSVI and a gene usually linked to MS. Whether that conclussion supports or not the CCSVI link with MS is not up to us to decide but sources that will come afterwards. --Garrondo (talk) 07:48, 10 March 2011 (UTC)

For the moment I have edited the article and eliminated specific numbers as a way of not giving them too much weight, eliminated p values per MEDMOS and changed word confirmed to reported: it is only another primary study. We can not decide if it confirms or disconfirms anything.--Garrondo (talk) 07:52, 10 March 2011 (UTC)

A report out today

[7] Doc James (talk · contribs · email) 14:00, 25 April 2011 (UTC)

It is not really a report, it is a brief and superficial essay on the topic for general practitioners without any new information for this Wikipedia article. Sergei Gutnikov (talk) 14:51, 26 April 2011 (UTC)

It reconfirms what the article contains. --Doc James (talk · contribs · email) 15:03, 26 April 2011 (UTC)$

It is quite possible that it is based on this Wikipedia article. Sergei Gutnikov (talk) 13:12, 27 April 2011 (UTC)

Gutkin's cited sources do not include this WP article. As he appears to be writing ex officio (his byline reads "Cal Gutkin, MD CCFP(EM) FCFP, EXECUTIVE DIRECTOR AND CHIEF EXECUTIVE OFFICER" and the piece appears in the CFP's official journal) it is hardly fair to dismiss it as a "brief and superficial essay". In fact it appears to be principally a response to an ethical question that was topical at the time. He cites Scissons H. "MS patient gets ’liberation’ therapy abroad, struggles to find followup care at home". Postmedia News 2011 Jan 27, but many news pieces addressed the same question: are physicians expected to treat the complications of returned medical tourists? LeadSongDog come howl! 16:03, 27 April 2011 (UTC)

What's the problem here? Are physicians expected to treat patients who attempted suicide? Surely, they are. Patients who attempted a risky treatment in good faith deserve help from physicians not less than suicidal patients. Sergei Gutnikov (talk) 23:47, 3 May 2011 (UTC)

Nature this week has an item on the issue, focusing particularly on the enormous coverage in Canada. doi:10.1038/472410a JFW | T@lk 09:48, 3 May 2011 (UTC)

Interesting. MS is a prominent condition here.--Doc James (talk · contribs · email) 15:35, 3 May 2011 (UTC)

CCSVI SHOULD BE A HUMAN RIGHT NOT RELATED TO MS. MS MAY BE A REASON TO GET TESTED AND IF YOUR 90% BLOCKED YOU MAY WISH TO HAVE IT FIXED IF YOU ARE 10% BLOCKED YOU MAY OPT OUT OF HAVING THE PROCEDURE. WHY DOES SCIENCE NEED A CORRELATION BETWEEN THE TWO. I HAVE MS AND I WANT TO KNOW IF MY VIENS ARE RESTRICTED. ITS A HUMAN ISSUE NOT JUST AN MS ISSUE! —Preceding unsigned comment added by 24.91.217.85 (talk) 20:49, 19 May 2011 (UTC)

This comment represents feelings of many patients. They want to know whether their veins are normal or not. They have a right to have an investigation to be done, certainly a non-invasive one at their own expense. And if the veins are found normal in takes one concern off their list. If found abnormal - they should discuss it with their doctor. Don't forget about the desperate psychological state of these patients (and the emotional message above illustrates it). Sergei Gutnikov (talk) 10:33, 17 June 2011 (UTC)

That is an interesting ethical questions. Here in Canada we would say "no". I have also worked in a private health care system for a bit and discussed this with one of the radiologists. He said he would NOT do an whole body MRI in someone with no indications even if they asked as evidence shows harm from a whole body MRI is greater than the benefit as problems are usually found that need more procedures in follow up and thus put the person at risk. The same would apply here I assume. Doc James (talk · contribs · email) 17:47, 17 June 2011 (UTC)

No, your assumption is wrong. Here is a completely different story. Firstly, ultrasound Doppler examination is not harmful at all. Secondly, are you sure he mentioned MRI, not CT scan? CT scan gives harmful radiation exposure, MRI does not. Thirdly, have you personally followed up any patients with progressive MS? They have only one future - further disability. One way road - tomorrow they will not be able to do whatever little they can do today. This makes them depressed. I observed a depressed patient whose depression went away entirely while she was trying to get CCSVI diagnostic and treatment. Seven months without suicidal thoughts - ins't that a great benefit for the quality of life? Sergei Gutnikov (talk) 17:59, 17 June 2011 (UTC)

If the procedure has no benefit, you are exposing them to risks, including risk of death, for a placebo effect. By attempting the procedure before it has been demonstrated effective, you could potentially kill hundreds, or thousands of people world-wide for no reason. If the procedure has benefit, it should be easy to show in well-controlled research and can thus have its use expanded and adopted as standard of care throughout the world. If it has no benefit, but it is still used, every single person who dies or has life-altering adverse effects suffered for absolutely no reason. Depriving people of the procedure until it is tested may deprive people of hope, but if it is a false hope then it will kill for nothing. WLU (t) (c) Wikipedia's rules:^simple/_complex 18:44, 17 June 2011 (UTC)

Yes I am sure it was MRI. Per trauma.org "WHAT IS VOMIT? VOMIT is 'Victim of Medical Imaging Technology'. A term used collectively to describe misuse or misreading of imaging studies. Often associated with VOMIT is BARF: Brainless Application of Radiologic Findings. The term is clearly biased and overused, yet hass a sound principle - that inappropriate radiology may be worse than no radiology at all." [8] If you make false diagnosis you cause harm. This is why US screening is not recommended for ovarian cancer.

You can take it to another extreme and ban all diagnostics - screening of moles for melanoma, testing for HIV after casual sexual contacts - in case the diagnosis turns out to be false. Don't make absurd arguments, they don't help. Sergei Gutnikov (talk) 10:18, 19 June 2011 (UTC)

I am in Canada I see people with severe MS on a regular basis. My heart goes out to them. But ethically I must first do no harm (and in my interpretation that also means not giving inappropriate hope).Doc James (talk · contribs · email) 18:51, 17 June 2011 (UTC)

Hope is a powerful treatment itself. And to WLU: what is the benefit of cosmetic surgery? People die of complications too, but it is performed although it is known for sure (unlike with CCSVI) that it has no benefit for health. And the psychological suffering of patients who opt for cosmetic surgery is in most cases incomparable with MS. Sergei Gutnikov (talk) 10:18, 19 June 2011 (UTC)

The difference between CCSVI and screening moles, HIV tests, etc. is that the latter are linked to diseases, while the former is hypothetical.

Governments like Canada's normally don't pay for cosmetic surgery. It's known that cosmetic surgery is cosmetic, it provides no health benefits (unlike the liberation procedure, which purports to treat a disease). And how would you feel if your desperate grandmother (or you) dumped her life's savings into a liberation procedure and died from it, then two years later they find it is worse than useless? Your grandmother is dead, for no reason except an Italian managed to convince himself he invented a life-saving procedure for his wife. You may live, but have no money - for treatment, for quality of life, for food, for rent. All for nothing. You were milked, you made some surgeon in the Caribbean wealthy, you would have been better off staying home and simply mailing him the money. Hope isn't a treatment, it's a form of emotion-based coping. You're actively supporting the placebo effect as treatment. Shall we then ignore all the evidence homeopathy is naught but water and sugar, because it "helps"? Test it first, that's the ethical thing to do, it's the fiscally responsible thing to do, and it's not going to crush falsely-raised hopes. WLU (t) (c) Wikipedia's rules:^simple/_complex 13:04, 19 June 2011 (UTC)

WLU, have you seen any patients, who underwent the CCSVI treatment and did not have any positive effect? (I deliberately leave out those who think they had positive effect - it's a different story). Did any of them tell you that they regretted they had attempted this treatment? And late I will answer your question "How I would feel", because I can tell you how I actually feel, not how I would. Sergei Gutnikov (talk) 11:59, 20 June 2011 (UTC)

I've seen zero patients who have had CCSVI. It's incumbent on the person claiming a positive effect to demonstrate it. If the liberation procedure is genuinely helpful, then the research should substantiate it, and a convincing double-blind placebo study, if positive, will go far further in the number of patients benefiting from the surgery than just the rich ones who can afford to fly to a clinic in a country with slipshod regulations. Also, the people who died because of the treatment wont' regret it, because they're dead. WLU (t) (c) Wikipedia's rules:^simple/_complex 17:34, 20 June 2011 (UTC)

"I haven't seen a single patient but I know what they need and how they feel!". Utterly pathetic, isn't it? Sergei Gutnikov (talk) 10:14, 21 June 2011 (UTC)

It is unethical to encourage unproven and possibly dangerous treatments. A placebo effect is not sufficient especially if my tax dollars are going to pay for it. Money equal lives saved if spent properly. Spending money on something that does not definitely help causes harm as treatments we do know work cannot subsequently be paid for.Doc James (talk · contribs · email) 17:45, 20 June 2011 (UTC)

You are mixing together two issues: (i) paying for the procedure from public funds (which should not be done for an unproven procedure) and (ii) making it available privately for those patients who are convinced they want to attempt taking into account the associated risks (like in cosmetic surgery) - it is unethical not to give them this opportunity. How would you feel if a patient, for whom you closed both public and private ways to get diagnosis and treatment of CCSVI, commits suicide? Sergei Gutnikov (talk) 10:14, 21 June 2011 (UTC)

Conversely, Sergei, how would you feel if a private patient you encouraged to pursue an ineffectual "therapy" (laetril comes to mind) exhausted their resources (and their family's) in that pursuit only to have a useful one emerge which they could no longer afford? Choosing unproven or ineffective "treatment" options at random as a way of offering hope is at a great ethical distance from constructing and executing an effective clinical trial programme. LeadSongDog come howl! 6:28, 21 June 2011 (UTC)

I would feel bad. But I am talking about the patients who themselves insist on having the procedure done, because they know somebody whom it helped and they have no other treatment available whatsoever. They want to take a chance. And about ineffective treatment - how do you know before the trials are completed? I personally saw a patient whose dysarthria gone after IJV stenting. And this is not something that can be a placebo effect, it is seen objectively by other people. But in the same patient, strength of arms and legs has not improved, maybe even started to deteriorate faster. Can it be because IJV stenting normalised something above the neck, but arms and legs problems in this patient have a root in the spinal cord and hence were not affected by the CCSVI treatment on the neck, or venous blood flow in the spine became worse after restoration of the flow in the neck? We don't know. Sergei Gutnikov (talk) 19:47, 21 June 2011 (UTC)

A case such as that might be one in which the patient would wish to participate in a double-blinded clinical trial, if a design can be contrived which is itself ethical. Just speculating of course, but perhaps stenting vs balloon angioplasty alone vs exploration only? Obviously the surgeons would know, but the patient and the follow-up physician could remain blinded for some period of time. In any case, if a patient is determined to take the risk of the surgery this would tend to (statistically) reduce that risk to the individual while simultaneously increasing the knowledge basis for future decisions. The cadre would have to consist solely of individuals who would otherwise be expected to engage in higher-risk alternatives such as third-world surgical tourism. Any good refs on the study designs that are being considered? LeadSongDog come howl! 21:43, 21 June 2011 (UTC)

It works for science but it doesn't work for these patients, their disease is different from other diseases, they cannot afford to wait a year or two. Just imagine, for the sake of argument, that at 1-year or 3-year follow-up a positive effect is confirmed. The treatment is proven to stop progressing of disability. And the patient in the control group, who a year ago could move herself from the wheelchair to the toilet now cannot do it and has to rely on her cares for this intimate act for the rest of her life, even if she is given the treatment now. If she had done a real treatment - not a sham intervention she was randomised to - she would be able to use the toilet herself. Had it been ethical not to give her the treatment she asked for? Even worse to pretend that the treatment was done while it actually was not? I work with randomised controlled trials and have postgraduate qualification in evidence-based health care, so I know the methodology in detail Sergei Gutnikov (talk) 19:53, 22 June 2011 (UTC)

If it takes three years to establish any positive effect, then that effect is either small or else it is inconsistent, so the patients haven't missed out on very much benefit. If it is established sooner, then of course trials can and should be terminated early if it is unethical to deny effective treatment to those in the sham/placebo arm. I would never argue for pretending they got the treatment, informed consent for the randomization is ethically essential. The real question is why should they not choose to participate, if they are already so set on getting the treatment? LeadSongDog come howl! 21:20, 22 June 2011 (UTC)

Those who would agree to participate, and are prepared to take risk (which will be the same in both treatment and control arms, won't it?) want treatment fot themselves, not the sham operation (and further worse disability for themselves) for the benefit of mankind and medical science. Therefore randomisation is not ethical for such patients. Sergei Gutnikov (talk) 21:43, 22 June 2011 (UTC)

The risks and benefits of treatment versus control are unknown, that's the whole point of testing. Generally the treatment is compared to usual care (plus dummy surgery in this case). Randomization is ethical when the effectiveness and dangers are unknown (but there is a reasonable expectation there may be benefit); most studies now have a built-in "stop point" - if there is evidence that the treatment arm sees unarguable improvement (or worsening) then the trial is terminated and reported out early (that's what happened with the Women's Health Initiative I believe, as well as early HIV treatments).

Put another way, how would you propose testing this treatment without randomization? WLU (t) (c) Wikipedia's rules:^simple/_complex 18:04, 23 June 2011 (UTC)

There is no treatment for progressive MS. At all. To test - by observation of the patients who opted for CCSVI treatment. Randomisation is not ethical when you subject the patients to all risks of angiography and anticoagulation treatment (which actually was the cause of death in both cases of lethal complication!) without actually treating them. Sergei Gutnikov (talk) 14:58, 24 June 2011 (UTC)

What they do is they give people the usual sedatives. Make cuts in there skin but do not perform the procedure. This is the placebo arm of surgical trials. Frequently done and deemed ethical. Doc James (talk · contribs · email) 15:04, 24 June 2011 (UTC)

Sergei, how would you control for the placebo effect?

• If there was placebo effect, one would see it with all stuff like acupuncture, homeopathy etc. But one doesn't. Sergei Gutnikov (talk) 12:53, 25 June 2011 (UTC)

The best evidence of homeopathy indicates it is placebo. Acupuncture, if it has an effect that is not simply placebo, is only minimally effective. Also, even in drug trials (and for that matter, surgical intervention) where results are well-supported with bench and animal research indicating significant changes in gene expression or other biochemical markers, placebo controls are still necessary. In fact, the point of including placebo trials is to estimate the amount of improvement that is due to the medicine rather than the placebo effect. The placebo effect is everywhere and omnipresent, including in over-the-counter medicine and even opiates. You seem to believe the placebo effect is also unitary; it is not. Pills are stronger than mere suggestion, injections are stronger than mere pills, sham surgery is stronger than injection. Two pills or shots are better than one, blue pills are better for depression while red pills are better for pain. You may benefit from reading Snake oil science and in particular Bad Science - I've anchored the google books preview to the start of the chapter on placebo effects. WLU (t) (c) Wikipedia's rules:^simple/_complex 01:02, 26 June 2011 (UTC)

Are the symptoms of MS cyclical (i.e. they get better and worse at times without a clear reason)? How do you know that the treatment made people better, and they're not simply getting better (or worse) because of the natural cycles in the symptoms of MS?

• No, they are not cyclical in progressive MS. Don't confuse it with relapsing-remitting MS. My arguments apply to progressive MS, that's the very point. Are you so insistent because you talk about more widespread relapsing-remitting? Sergei Gutnikov (talk) 12:53, 25 June 2011 (UTC)

Is there a type of MS that is completely uniform, whose signs and symptoms never change? Are all the consequences of MS objectively verifiable? Are there any that are reported subjectively? If the signs and symptoms change, and/or are subjectively reported, then how do you know the improvements are due to biological changes, and not merely changes in how signs and symptoms are perceived or natural changes in the disease's presentation? Is progressive MS only one-way, patients never experience better or worse days even if the general trend is decline? WLU (t) (c) Wikipedia's rules:^simple/_complex 01:02, 26 June 2011 (UTC)

How would you control for experimenter's bias?

How would you control for the Hawthorne effect?

How do you control for Demand characteristics? WLU (t) (c) Wikipedia's rules:^simple/_complex 18:09, 24 June 2011 (UTC)

• I will not do that. You guys have forgotten, that doctors must treat patients first, do the science second. Sergei Gutnikov (talk) 12:53, 25 June 2011 (UTC)

Keep in mind that your choice would give doctors zero evidence-based option for choosing between treatments. We would literally have no way of knowing if bleeding were better than lobotomy or colon cleansing (or antibiotics). But if you're simply unwilling to engage in the evidence base, then I must respectfully ask you to decline from editing the page itself, though you are still welcome to present suggestions on the talk page. Wikipedia is based on research, indeed on high-quality research, and your comments indicate you don't seem to understand the importance of it or the process behind it. Doctors must provide more than simply hope to their patients, otherwise we might as well send them to snake handlers and faith healers. WLU (t) (c) Wikipedia's rules:^simple/_complex 01:02, 26 June 2011 (UTC)

If a patient after visiting a doctor doesn't feel better he visited not a doctor. I respectfully decline you proposal for me not to edit this article (as well as any other article in Wikipedia). I have high enough qualifications, including a postgraduate one in evidence-based health care from the University of Oxford, to do it without your patronising. Sergei Gutnikov (talk) 22:29, 26 June 2011 (UTC)

If you can't understand the reason for a placebo-controlled trial, in an illness with a large number of subjective symptoms and a course with dramatic swings in intensity, then competence is an issue as that is a basic concept that nearly every medical source would have to deal with. Your qualifications are irrelevant. I understand that you are passionate about the subject, but dismissing such a basic issue as the necessity for placebo-controlled research in such a controversial area is not a good thing. WLU (t) (c) Wikipedia's rules:^simple/_complex 01:02, 27 June 2011 (UTC)

Colleague WLU, please stop personal accusations (see WP:Personal) and concentrate on discussion of the article. Also, please note: This page is not a forum for general discussion of the article's subject (see the top of this page). Sergei Gutnikov (talk) 01:43, 27 June 2011 (UTC)

We all must simply follow WP:MEDRS. Doc James (talk · contribs · email) 04:36, 27 June 2011 (UTC)

Removed sentence from lead

I've removed the following sentence from the lead:

“ An endovascular intervention for the syndrome has been attempted however further research is required to determine if the benefits outweigh the risks of the procedure. ”

My initial reason was that it duplicated the following paragraph, but on a bit more careful re-reading I noted my error and added a qualifier to the section. But I still believe the sentence should not be included as is. First it assumes the syndrome exists, when the rest of the lead states that it is a hypothesis. The research on CCSVI is in a state of flux even over its very existence and we shouldn't portray it as prematurely settled. Second, it states "to determine if the benefits outweigh the risks". It has not been established whether there are benefits to the procedure at all. A procedure with minimal risks and no benefits is not a procedure worth doing. WLU (t) (c) Wikipedia's rules:^simple/_complex 13:34, 11 June 2011 (UTC)

There is no contradiction between "hypothesis" and "assume the syndrome exists", in fact that is exactly what the hypothesis is in this case, existence. The corollary that modification of the venous narrowing leads to modification of the hypothesized syndrome is both testable and falsifiable. Are there no benefits or have they simply not been adequately studied? That remains the topic of honest debate at this time, even though the evidence seems to lean to the former. LeadSongDog come howl! 21:59, 21 June 2011 (UTC)

Tight Junction permeability theory of disease

Just an FYI, my new theory provides a slight correction to this theory. As detailed in my book, an increase in tight junction permeability results in nutrients that are actively transported 'leaking out' - of relevance here are Biotin and dopamine precusors. The leakiness is partially compensated for by cortisol (which triggers catabolism of tryptophan since dopamine and serotonin compete for nutrients for biosynthesis - often resulting in comorbid depression/anxiety/anger/etc). The leakiness results in an insufficient supply of dopamine, serotonin, biotin, glutathione (the main things of interest...). The low biotin results in the mylenation problems. The mylneation and low serotonin and or dopamine results in a weakened signal along the neuron. A weak neuronal signaling is the signal for 'help i'm under attack' and so the immune system is directed to investigate.

This disease process and all other neurological disease processes (neuro developmental, neurodegenerative, movement disorders, psychiatric disorders, autoimmune diseases, allergies, and more) along with proposed prevention/treatments/cures are covered in my book

http://www.amazon.com/Junction-Permeability-theory-disease-ebook/dp/B005BU9VZO

If an MD here is interested can provide for free the google doc version which the ebook is based on. Formatting is a tad crude since I rushed it to get it public as quickly as reasonable. A prettier version with more references is under development. — Preceding unsigned comment added by LetterRip (talk • contribs) 13:40, 10 July 2011 (UTC)

Having a cure for all diseases is never a good sign. Irrespective, for the purposes of wikipedia I doubt that book would be considered a WP:MEDRS and would only support inclusion of the idea if there were pubmed-indexed sources substantiating it that demonstrated acceptance beyond a single author. Otherwise, it is undue weight on a fringe theory that would result in wikipedia being used as a soapbox. WLU (t) (c) Wikipedia's rules:^simple/_complex 10:30, 13 July 2011 (UTC)

Studies to date

I have made a table showing the main studies that have been performed looking for a CCSVI and MS correlation (I have excluded trials about angioplasties because patients are selected with both CCSVI and MS and those trials are therefore biased). I put the table here to discuss it and eventually include it in the article.

Summary of the correlation trials

Study	Blinded	Participants	Patients	Controls	prevalence (true positives)
Intracranial Venous Haemodynamics in MS (Zamboni et al.)	NO	149	89	60	Not reported
CCSVI in patients with multiple sclerosis (Zamboni et al.)	NO	300	65	45	100%
The value of cerebral Doppler venous haemodynamics in the assessment of multiple sclerosis (Zamboni et al.)	YES	287	109	177	100%
BNAC CTEVD (Zivadinov et al.)	YES	499	289	210	62.5%
Utano National Hospital, Japan (Tanaka et al.)	YES	28	17	11	0%
Standford study (G. Zaharchuk et al.)	YES	139	39	100	100%
No cerebrocervical venous congestion in patients with multiple sclerosis (F. Doepp)	YES	76	56	20	1.8%
Extra-cranial venous flow in patients with multiple sclerosis (E. Auriel)	YES	59	27	32	100%
University of Milan Study (M. Denislic)	YES	560	560	0	95.1%

--Juansempere (talk) 08:05, 12 October 2011 (UTC)

New published review

There is a new review by Zivadinov [9]

They say "revious CV studies in MS [17,18,23,25] proposed that the extracranial venous anomalies are likely to be truncular venous malformations [48] characterized by intraluminal defects (such as flaps, webs, septums, membranes and malformed valves) or by extraluminal abnormalities represented by stenoses of the venous wall" and "The majority of CCSVI pathology is confined to the intraluminal portion of the extracranial veins, which requires high-resolution B-mode imaging for visualization of these abnormalities"

maybe this could be added to the article?. — Preceding unsigned comment added by 94.126.240.2 (talk) 07:38, 20 October 2011 (UTC)

CCSVI has been done worldwide to over 20,000 and IS a way forward .Montel Williams has now had and many many more all with POSITIVES — Preceding unsigned comment added by Lynneheal (talk • contribs) 13:26, 2 January 2012 (UTC)

CCSVI/Liberation Treatment Links

Links put back in good faith, but mainly to help people with MS learn more about CCSVI and The Liberation Treatment. The Liberation Treatment is the possible cure for MS. They're not spam. The article that I've provided includes information that Wikipedia doesn't have. The Atlanta CCSVI website will let people with MS know where they can go to get diagnosed with CCSVI. If patients with MS get The Liberation Treatment they or whoever's with them need to make sure that the Doctors properly clean the instruments and give them a prescription to prevent Blood Clots so that nothing goes wrong. I've been doing research on The Liberation Treatment as my cousin was diagnosed with MS in 2004. — Preceding unsigned comment added by 99.1.180.254 (talk) 04:35, 10 June 2012 (UTC)

These links are not suitable. Please do not add them again. Doc James (talk · contribs · email) 05:25, 10 June 2012 (UTC)

To 99.1.180.254: please see WP:MEDRS and WP:EL which explains why the CBC article and external links you added are not suitable. --sciencewatcher (talk) 14:34, 10 June 2012 (UTC)

Which is more important though? WP:MEDRS and WP:EL or easing a painful human burden? Testimonials are more often than not genuine. You all know as well as I do that research takes too long, costs too much, and is often so difficult to replicate that any failed attempts are shelved indefinitely. Where CCSVI has helped people, its story ought to be allowed to at least help others. Throwing the book at us for trying to help people isn't what Wikipedia is about. CCSVI is worth a shot, even when it doesn't work. Applying these guidelines gets in the way of this (at least in this particular case). Those links could help people. Failures make us stronger. We mean only to help ourselves and our families. Please do not impede us. Shtanto (talk) 23:50, 2 March 2013 (UTC)

The difficulty is that CCSVI can also kill people, waste peoples time, cost the tax payer a greater deal and thus harm other people because other services are cut. We need to determine if the benefit is greater than the risk. So what is more important? WP:MEDRS. Doc James (talk · contribs · email) (if I write on your page reply on mine) 00:08, 3 March 2013 (UTC)

I know, I conceded as much further down. I want stem cells too. A lot of people would get the good of them, MSers included. CCSVI still has a question hanging over it. The risk has to be taken to find out, even if it kills people. I'll gladly have this done myself to prove it one way or the other. So far I've found a hospital that'll do it. Now all I need is insurer approval. Informed choice needs good information. If the links in question have been vetted, they should be let in. If they're full of crap, toss them. The neurologists have a clever tactic where they tell us to prove CCSVI works but won't allow testing to find this out. So what's important is the discovery. If it works for me, it might work for you as well. Proving it will, that's expensive but only because of necessary high standards. Shtanto (talk) 16:18, 3 March 2013 (UTC)

Trials are currently underway. Hopefully if you get it done you will be part of a trial. Best Doc James (talk · contribs · email) (if I write on your page reply on mine) 17:24, 3 March 2013 (UTC)

2013 review

• Valdueza, JM (2013 Feb 27). "What went wrong? The flawed concept of cerebrospinal venous insufficiency". Journal of cerebral blood flow and metabolism : official journal of the International Society of Cerebral Blood Flow and Metabolism. PMID 23443168. {{cite journal}}: Check date values in: |date= (help); Unknown parameter |coauthors= ignored (|author= suggested) (help)
• And a 2012 Cochrane review van Zuuren, EJ (2012 Dec 12). "Percutaneous transluminal angioplasty for treatment of chronic cerebrospinal venous insufficiency (CCSVI) in multiple sclerosis patients". Cochrane database of systematic reviews (Online). 12: CD009903. PMID 23235683. {{cite journal}}: Check date values in: |date= (help); Unknown parameter |coauthors= ignored (|author= suggested) (help) Doc James (talk · contribs · email) (if I write on your page reply on mine) 22:00, 4 March 2013 (UTC)

This one comments on the fact that Zamboni has patents for the device that makes the diagnosis and gets funding from Esaote which were not disclosed in some of his publications.Stone, K (2012 Mar). "Medical device conflict of interest in the CCSVI debate". Annals of neurology. 71 (3): A6-8. PMID 22451214. {{cite journal}}: Check date values in: |date= (help) Doc James (talk · contribs · email) (if I write on your page reply on mine) 22:13, 4 March 2013 (UTC)

Heads Up

New results coming out next Weds, Zivadinov et alia. Teasers at [10] [11] and discussion at youtu.be/94gLM4QlU_A suggest he's come around to a new position on the surgery. LeadSongDog come howl! 21:22, 15 March 2013 (UTC)

CCSVI or Stem Cells - which is better?

The way I see it, CCSVI is a great way to halt MS progression. Does it fix any existing damage? I wouldn't imagine so, unless it facilitates the bodies' healing and repair systems. To fix damage we need stem cells. I think that's what the neurology folks get upset about. CCSVI to them is a diversion of research funding that would otherwise have been spent on stem cells (aka myelin repair systems). I'll have to have this done myself to see if it helps me and obviously if I do manage to get it done, I hope it does work. Proving this is so often a snag. It can get frustrating with all the setbacks. Research these days is so often a high cost low risk low reward exchange. Not much that can be done about it either. This is still first generation CCSVI too. It took many years of surgical experimentation before coronary problems got enough research done on them that they might be solved. I just wish it didn't take so long. I suppose it has to. Maybe that's time I don't have. Maybe I should work on stem cell repair techniques instead because by the time they get approval, I'll really need them. There are 2 ways to stay in the same spot. Keep walking along the treadmill or hit the pause button and try to stay standing. Which would you choose? Shtanto (talk) 23:41, 2 March 2013 (UTC)

Any evidence to support the "CCSVI is a great way to halt MS progression"? Doc James (talk · contribs · email) (if I write on your page reply on mine) 00:05, 3 March 2013 (UTC)

Testimonials. Lots of testimonials. But I know those don't wash here. They're good enough for me though Shtanto (talk) 16:02, 3 March 2013 (UTC)

Please remember that Wikipedia is not a research journal, nor a review of recent work. We'll await publication of reviews in peer reviewed refereed journals to tell us what informed experts consider to be important.LeadSongDog come howl! 04:45, 4 March 2013 (UTC)

How can anyone be an expert on a new discovery? Zamboni could be considered an expert on CCSVI by virtue of the number of times he has found it. Who are the experts? Neurologists? Radiologists? Patients? Sick people will accept less than super high grade stuff if it helps them. Given all the hurdles and troubles put in front of science, it's a wonder it moves forward at all. Wikipedia promotes research. Some biotech student is going to come across this and run with it. I can't name any specific experts. How am I supposed to prove this works if only experts get published? And then we've got the politics of medical journals which I won't even start on. Shtanto (talk) 23:42, 4 March 2013 (UTC)

That's exactly the point of wp:NOR. You are not supposed to prove anything on Wikipedia. There are many other places to publish original research, but that is not what Wikipedia is for, it is an encyclopedia. Please do not try to twist it to your purpose, that never turns out well.LeadSongDog come howl! 06:32, 5 March 2013 (UTC)

Alright then, I won't ask Wikipedians to prove a point so. What I would like to see though is a list of how things are done. There's a slight degree of disparity between the way each CCSVI treatment centre does things. To be perfectly honest of course, I've only spoken in person to 1 of the Doctors who does this operation. We've got different places, each having different flavours. Well alright then, I'll go find out if there are actually any major differences between the way each centre goes about this, but it'd be nice if I had some help. I have a problem with Buffalo because it didn't tell me how things were done. Maybe it did, maybe I haven't looked hard enough. Maybe it should be easier to find? Standard treatment methodology should be double balloon, cutting balloon, big balloon in that order. If everyone is doing treatment in this way, in the same way I hope, we're all golden. Now if Buffalo did things this way and folks still got worse, then we've debunked the theory and let's get to work on something else. If it didn't do things the way things are done now, then we've got an issue. So what I'm asking for is information. Ok? Shtanto (talk) 22:33, 3 April 2013 (UTC)

Again, you are drawing your own conclusions. We don't do that.LeadSongDog come howl! 23:26, 3 April 2013 (UTC)

Well then ask this: Do CCSVI procedures differ from one another or are they all the same? If Zamboni, Zivadinov, Sinan and Simka all do things slightly differently, is it any surprise their results vary so much? What I'm asking for is information. Ok?Shtanto (talk) 13:05, 12 April 2013 (UTC)

Content not directly related to improving the article with a highly promotional tone

Actually having both done is a better option. This procedure is

called The Liberation Treatment/Angioplasty Stem Cell Therapy. It's done in five steps. Stem Cells are necessary because without them The Liberation Treatment won't work. And yes The Liberation Treatment/Angioplasty Stem Cell Therapy reverses MS. However, if a clinic doesn't do both your best bet is to get The Liberation Treatment and then find a Stem Cell Doctor. An example would be Dr. Norbert Sass. Don't laugh at his name. Y'all can Google Dr. Sass. Should y'all get The Liberation Treatment/Angioplasty Stem Cell Therapy it would be wise to recover in the hospital for a few days just in case. The best way to prevent MS from coming back is by taking Vitamin D Supplements. Recent studies have shown that Vitamin D lowers your risk of getting MS.

1.The doctors collect bone marrow from your hip bone like if you have Bone Cancer. When your bone marrow is collected you're under anesthesia. Most patients don't find that having their bone marrow collected hurts.On the other hand, some patients are sore when the needle is inserted into their hip bone. Step 1 is normally 30 minutes.

2. Stem Cells are then processed via a state-of-the-art, CE approved Point-of-Care technique. Your stem cells are available usually in less than one hour. Stem Cell Processing takes place in a lab.

3.A venous catheter is inserted into a vein in your right arm or your left arm. After this happens Mannitol is introduced via an IV for 20 minutes. Mannitol is a safe drug that's used to open the blood-brain barrier which will allow the passage of your stem cells and other neurotrophic factors into the brain canal and the spinal canal. Then the stem cells are slowly introduced into the catheter so that they are thoroughly allowed to mix with your blood as they enter your body. You aren't required to undergo anesthesia for Step 3.

4. The procedure is done with a balloon tipped catheter in which autologous stem cells are used. Doctors are guided with X-Ray scanning. As soon as the catheter hits the affected vein it is then widened with the catheter. This only takes 90 minutes. After Step 4 is completed the patient will spend 2 hours or 3 hours in the recovery room so the doctors can make sure that the entry site isn't bleeding.

5.The balloon tipped catheter is inserted into the femoral vein. The catheter is guided through the heart and the stem cells are then released into the the pulmonary artery. 30% - 50% of the stem cells are indirectly brought into the brain arteries. There is zero chance of embolic complications.

My cousin has PPMS. She was placed in a nursing home in 2010. She might get The Liberation Treatment/Angioplasty Stem Cell Therapy. — Preceding unsigned comment added by 108.249.22.222 (talk) 02:46, 24 April 2013 (UTC)

Any addition to the article should be based on reliable sources (See WP:MEDRS), whereas talk pages should be used for discussion on how to improve the article and not to discuss CCSVI and its treatments by themselves. Moreover, talk pages should not be used to include misleading promotional content.--Garrondo (talk) 07:10, 24 April 2013 (UTC)

Yes we are not a chat room and we are not here to provide medical advice.Doc James (talk · contribs · email) (if I write on your page reply on mine) 08:22, 24 April 2013 (UTC)

Reversion

I have eliminated content by Juansempere per multiple issues:

• It was based in primary sources, which per WP:MEDRS are usually rarely reliable. Moreover among them there was one 40 years old and another from the journal medical hypotheses, making them even more inadequate.
• They were used to debunk an statement from the CDC which can be considered a secondary source, implying that CCSVI itself has been found in other disease so the CDC is wrong.
• Such sources do not mention CCSVI but only venous problems (since they are older than the CCSVI concept). So unless a secondary source on CCSVI uses them to point out that CCSVI has been found in other diseases they are quite irrelevant to the article: This is not an article about venous problems but about CCSVI which until today is a concept only commented in relation to MS
• As a minor additional problem: they were added to the lead, which even if appropiate (which they are not) would certanly not be the place for inlclusion.

--Garrondo (talk) 20:25, 4 July 2013 (UTC)

Existence as a clinical entity

I acknowledge that venous problems and CCSVI are not the same. Nevertheless, the problem is that the article that denies the pathological existence is writen by MS professionals that can only speak about MS, and probably they question CCSVI only in this context. Despite of this, the text questions CCSVI existence in general.

In this context my remark is necessary because CCSVI can be a pathological entity in the given non-MS contexts, even if it is not such a thing respect MS.

--Juansempere (talk) 10:24, 8 July 2013 (UTC)

You need to find high quality WP:MEDRS compliant sourcing (such as secondary review articles) that talks about "chronic cerebrospinal venous insufficiency" as a clinical entity independent of MS, not throw together random primary studies that discuss random venous problems in the head and neck region. What you are doing violates WP:SYNTH, WP:WEIGHT and WP:MEDRS. Yobol (talk) 12:10, 8 July 2013 (UTC)

Here there is a review if you really want a reference [12] but this is not my point. My question is if we can accept a source that questions existence of CCSVI in MS as a reference to question CCSVI in any possible field of the medicine. --Juansempere (talk) 12:45, 8 July 2013 (UTC)

If you are talking about the FDA source, yes, since it discusses the existence of CCSVI as an entity independent of MS: "There is no clear diagnostic evidence that CCSVI exists as a distinct clinical disorder or is linked to MS." Note the use of the word "or". Yobol (talk) 12:54, 8 July 2013 (UTC)

But I request consistency. If you want to use that source you should be consistent with it . It also says "This narrowing of neck and chest veins has been called CCSVI" and therefore I should be allowed to show reviews about narrowing in neck and chest veins against the FDA statements, which by the way, is only competent in food and drugs approvals, not any arbitrary medical condition.

Are we talking about this edit [13]. The first ref is a primary research paper.[14]. The second paper does not mention CCSVI in the abstract. The third paper is from 1976. Please use secondary sources from the last 3-5 years ( at most 10 ). Doc James (talk · contribs · email) (if I write on your page reply on mine) 13:35, 8 July 2013 (UTC)

Bias

The first heading on this one is 'consequences'. It's almost as if there's a negative bias being aired.

I went to Poland myself. By all means, get scanned, but don't be too upset if there's nothing that can be done. CCSVI is still only half baked. Worst of all, Doppler scans can't be shared between treatment centres e.g. your scans in Bulgaria won't help if you go to Kuwait.

Current treatment centres I'm aware of: Poland Bulgaria Germany (Frankfurt, also doing stem cells) India Kuwait

Places that used to offer the procedure but have since shut down: France Belgium Belfast Glasgow

I can quite understand the skeptics. Many MSers tour Eastern Europe in the vague hope of finding a CCSVI treatment centre that will magically fix them. Fools and their gold in many ways. I can park this for myself now. Instead, I work on trying to make venography scans available in Ireland. The cure is diet. Always has been. Science has known this since the 50s. CCSVI is a real tinfoil hat issue, but I hope some folks get the good of it. Regardless of what we think, less suffering in the world is a good thing. — Preceding unsigned comment added by Shtanto (talk • contribs) 20:07, 28 July 2013 (UTC)

Lancet trial

Does not confirm CCSVI using gold standard venography [15] Doc James (talk · contribs · email) (if I write on your page reply on mine) 12:29, 9 October 2013 (UTC)

Interesting. Definitely should be included in our article – despite being a primary study – for the reasons outlined in WP:MEDRS. The relevant passage is as follows (my emphasis added):

...For a short time afterwards, the findings will be so new that they will not be reflected in any review articles or other secondary sources. If the findings involve phase I or phase II clinical trials, small studies, studies that did not directly measure clinically important results, laboratory work with animal models, or isolated cells or tissue, then these findings are probably only indirectly relevant to understanding human health; in these cases, they should be entirely omitted. In other situations, such as randomized controlled trials, it may be helpful to temporarily cite the primary research report, until there has been time for review articles and other secondary sources to be written and published.

In this instance, we have a primary paper that speaks directly to an important unresolved question – the existence of the phenomenon described by this article – so there's no question of relevance or significance. The researchers used high-quality methods, proper blinding and controls, and a large population—and they published their results in a very high-quality journal. There is no reasonable question that this study will be heavily cited as soon as the secondary literature catches up to it. TenOfAllTrades(talk) 14:38, 21 October 2013 (UTC)

It is also worth noting that The Lancet took the further step of publishing a mini-review (as a 'comment') alongside the primary paper: Paul F, Wattjes MP. "Chronic cerebrospinal venous insufficiency in multiple sclerosis: the final curtain". This accompanying, fully-referenced commentary places the above-mentioned paper in the context of previous studies, and serves as a much better secondary source than we usually enjoy for recently-published studies. I will add it to our article's references to ameliorate the concerns expressed about including a primary source without secondary context. TenOfAllTrades(talk) 15:15, 23 October 2013 (UTC)

It is necessary to set an standard about references

I have just removed this

A 2013 study found that CCSVI is equally rare in people with and without MS, while narrowing of the cervical veins is equally common.

because the standard was to use references only from reviews. If this is not the case anymore, a new and clear standard should be agreed.

--Juansempere (talk) 22:20, 22 October 2013 (UTC)

This is already addressed in the section immediately above. It would probably be best to continue the discussion there – if you feel further discussion is required – rather than split the existing discussion between two separate threads. TenOfAllTrades(talk) 22:55, 22 October 2013 (UTC)

Just because this particular topic is extremely controversial, it is better to stick to the policy of using only reviews as sources in this article. Otherwise we will have tons of primary sources supporting both opposite points of view and this will make the wikipedia article an academic review for specialists rather than an encyclopaedic text for the wide audience. Sergei Gutnikov (talk) 14:47, 23 October 2013 (UTC)

I hope that you are aware of the sensitivity and specifity of the methods used. Here you have an estimation [16]. Using methods free of noise, like postmortem autopsies, you would have get a very different result, like [17].

As you can see in the previous article the number of stenosis in MS is similar than in controls but MS patients present intraluminar problems that do not appear in controls. Of course the CCSVI research is now focused in intraluminal problems, but this discussion is not about the merits of these articles. Is about how to decide the merit of a given article. It seems that you consider your own oppinion good enough to decide whether an article has merit enough.

Please, confirm that this is your position, or explain a little more which is the rigorous basis in which you base your decision.

--Juansempere (talk) 21:26, 23 October 2013 (UTC)

The only wikipedia policy that we must follow is WP:NPOV, all others are just guidelines. The issue is that at present this article is skewed towards the possibility that CCSVI is a real condition, whereas the prevailing point of view is that it is a bunch of crap. So we really must use some primary sources to show that CCSVI is mainly thought to be a bunch of crap, otherwise we are giving excessive weight to a minority POV. If there are no reviews available, we should be using primary sources. --sciencewatcher (talk) 23:29, 23 October 2013 (UTC)

Juan, please also take note of the date of the two works you cite. In the timeline of the CCSVI conjecture, 2011 is ancient history. LeadSongDog come howl! 02:48, 24 October 2013 (UTC)

I would see this paper as one of the very rare exceptions were a primary source can be used (at least temporarily). We will have a review article in a month or two to replace it with. Doc James (talk · contribs · email) (if I write on your page reply on mine) 00:55, 25 October 2013 (UTC)

I strongly demand equal rules for everybody. Surely the autopsy results will be also in a review eventually, and about dates, here you have one more recent finding differences in the veins [18]. --Juansempere (talk). I explicitly ask for withdrawal of the primary sources supported statements, or an explanation about the discrimination. I also request a public apology of those of you who support this double-rules behavior.

You have received many explanations for why the Lancet article mentioned above has been included as a source. These include the use of a large sample population, proper controls, full blinding of the individuals carrying out the analysis, publication in an extraordinarily prestigious, high-impact journal (impact factor 39.06), accompanying publication of independent commentary describing the significance of the work (an unusual immediate secondary endorsement: Paul F, Wattjes MP. "Chronic cerebrospinal venous insufficiency in multiple sclerosis: the final curtain"), and substantial independent news coverage.

In contrast, the paper that you're pushing here involved no blinding, appeared in a low-impact journal (BMC Neurology has an impact factor of 2.56), was not accompanied by editorial commentary reporting its significance, and has received no significant independent popular coverage. Everyone here faces "equal rules"; it's just that the sources you have provided aren't very strong. TenOfAllTrades(talk) 03:02, 7 November 2013 (UTC)

I'm in agreement with Ten, Doc and the others, there's no comparison in the quality or impact of the sources. Equal rules are being applied here, it's just that the sources are so unequal that we should be using the one and not the other. Zad68 03:40, 7 November 2013 (UTC)

I agree that the impact factor is important, and I accept this publication until further information is published, but if the impact factor is the criteria, we should stablish now which is the minimum for a primary source to be used. I still think that you are figuring out the required quality standards in a way suitable to defend your oppinions.

--Juansempere (talk) 13:37, 9 November 2013 (UTC)

If all you got out of the above discussions is that impact factor is the sole deciding criterion, then you really need to re-read the discussion. TenOfAllTrades(talk) 14:14, 9 November 2013 (UTC)

The only thing I got from the previous discussion is that you refuse to stablish a clear set of rules. Please, show me that I am wrong and propose something.

--Juansempere (talk) 14:28, 9 November 2013 (UTC)

Let me summarize it for you: [1] there is no fixed set of rules, you need to use your good judgement and the available evidence and [2] CCVSI is dead.

Now before you say it's just my "opinion" that CCVSI is dead, let me explain that I have no opinion on CCVSI, the reason I say it is dead is because the evidence from high quality research is saying it is dead. --sciencewatcher (talk) 17:09, 9 November 2013 (UTC)

You're mistaken, Juansempere. There is a clear set of rules: WP:MEDRS, to which you've been pointed repeatedly. What there isn't is a magic checklist that will allow you to determine purely mechanically whether or not a source is appropriate for use in a Wikipedia article. Too much depends on specific circumstances to give you a neat yes/no list; there isn't some etched-in-stone journal impact factor or article date or study size threshold that will automatically determine 'reliability' for Wikipedia's use. The different factors described in MEDRS have to be weighed for each source and claim. Unfortunately, that's the best answer you're going to get. TenOfAllTrades(talk) 17:40, 9 November 2013 (UTC)

Yes it is a combination of things including the availability of other sources. Agree with Ten that there is no simply rule. It is decided by consensus here on the talk page. Excellent sources will convince all of us at WPMED. This is not an excellent source and in light of the other sources was not appropriate. Doc James (talk · contribs · email) (if I write on your page reply on mine) 09:31, 10 November 2013 (UTC)

Incidentally, it may be worthwhile for editors interested in this area to also keep an eye on Multiple sclerosis research. It doesn't look like it's getting a lot of attention, and it may be harboring some over-broad claims, particularly with respect to CCSVI. There is a tendency to be overly confident, describing rather contentious hypotheses as "knowledge" or "fact" in Wikipedia's voice; I've fixed a couple – [19] – but it could probably use some more work. TenOfAllTrades(talk) 15:57, 10 November 2013 (UTC)

CCSVI

We have a new editor here attempting to replace reviews with the popular press such as in this edit [20] Thoughts. Doc James (talk · contribs · email) 04:13, 4 February 2015 (UTC)

The article certainly needs to be rewritten, but should be done properly. CCSVI has been pretty thoroughly debunked in the past 2 years, but the article doesn't reflect this. See for example here and here. --sciencewatcher (talk) 05:01, 4 February 2015 (UTC)

We state "Within the medical community, both the procedure and CCSVI itself have been met with skepticism" and "The "liberation procedure" has been criticized for possibly resulting in serious complications and deaths while its benefits have not been proven.[5][6] The United States Food and Drug Administration states that it is not clear if CCSVI exists as a clinical entity and that these treatments may cause more harm" in the lead. Doc James (talk · contribs · email) 07:00, 4 February 2015 (UTC)

Yes, I know, but it's more to do with the weight. We should give more weight to the negative studies. Also, the recent negative placebo-controlled trial isn't even mentioned in the article as far as I can tell. --sciencewatcher (talk) 15:16, 4 February 2015 (UTC)

Yes hasn't been updated in a while. Doc James (talk · contribs · email) 15:22, 4 February 2015 (UTC)

CCSVI

The real research! Phlebology February 2015 vol. 30 no. 1 52-60 Prevalence of chronic cerebrospinal venous insufficiency in multiple sclerosis: a blinded sonographic evaluationhttp://phl.sagepub.com/content/30/1/52.short Conclusion: Chronic cerebrospinal venous insufficiency is a haemodynamic condition strongly associated with multiple sclerosis and is not found in normal controls. The addition of M-mode ultrasound to the diagnostic protocol allows improved observation of venous valve abnormalities.

Many articles involving blood flow and cerebral vascular health. http://paper.li/CCSVI_Society/1306484186

New study finds that pwMS have inadequate cerebral blood flow response, which may be what is causing neurodegeneration.

http://ccsviinms.blogspot.com/2014/08/impaired-cerebrovascular-reactivity-in.html
Research over the past 4 years shows time and again the benefits of treating CCSVI in people with MS. I have to seriously wonder why with all the research and peer reviewed published studies why neurology and general medicine isn't taking this more seriously and offering this to their patients with MS..   http://phl.sagepub.com/content/early/2014/02/14/0268355514524193.abstract

Another study in the right direction! http://phl.sagepub.com/content/early/2013/11/18/0268355513512824.full

Prevalence of chronic cerebrospinal venous insufficiency in multiple sclerosis: a blinded sonographic evaluation http://phl.sagepub.com/content/early/2013/11/15/0268355513512823.abstract

Aqueductal cerebrospinal fluid pulsatility in healthy individuals is affected by impaired cerebral venous outflow http://onlinelibrary.wiley.com/doi/10.1002/jmri.24468/abstract?deniedAccessCustomisedMessage&userIsAuthenticated=false

Internal Jugular Veins Outflow in Patients with Multiple Sclerosis: A Catheter Venography Study http://www.jvir.org/article/S1051-0443(13)01393-6/abstract

Excellent examples of some great researchers over the years who have felt that MS is of a venous issue. You really have to wonder why it is and when it w http://www.ccsviitalia.org/le-vittime-della-ccsvi.html — Preceding unsigned comment added by 108.8.234.180 (talk) .

Please review our guideline for sourcing medical information where we place an emphasis on secondary sources. We generally avoid primary sources like those presented above. Yobol (talk) 13:52, 6 February 2015 (UTC)

UBC paper

At this edit, @Hyperionsteel: seems to think a recent primary study and its coverage in the popular press to be significant. If one reads it, however, one sees that each of the three groups examined has only one case. This is completely inadequate sample size to derive any significant results. I don't believe Zamboni's hypothesis any more than you do, but this paper is not the "nail in the coffin" that it is hyped as. LeadSongDog come howl! 01:07, 6 December 2015 (UTC)

Adding large quotes from the popular press is undue weight IMO and thus I have removed it again. There are lots of reviews on this topic and we do not need to hype a single paper. Doc James (talk · contribs · email) 07:56, 6 December 2015 (UTC)

@LeadSongDog: While I agree that we should be careful not to over-hype individual clinical studies (especially where, as Doc James notes, there are good reviews available) and that we shouldn't have giant quotes from press accounts, I will note that I think you've misinterpreted the significance and sample sizes in the study; I think, LeadSongDog, your summary is unduly and inaccurately harsh.

The core of Zamboni's argument is that CCSVI is the major cause of MS, and Zamboni's group reported that essentially all MS patients had CCSVI. In the UBC group's Lancet paper (Traboulsee et al.), they looked at cerebral blood flow in a reasonable-sized cohort of MS patients (about 70) as well as non-afflicted siblings of patients (about 40) and entirely unrelated control individuals (about 40).

1. The first thing that Traboulsee et al. observed is that a bit less than half of the MS patients (44%, 35 out of 79) actually met Zamboni's CCSVI criteria as measured by ultrasound.
2. Worse, the proportion of non-afflicted siblings and of unrelated controls who met Zamboni's CCSVI criteria, as measured by ultrasound, wasn't significantly different from the individuals in the MS group. Randomly-selected unrelated controls had essentially the same probability (45%, 17 out of 38) of showing "CCSVI" by ultrasound as MS patients.
3. The "one case" thing LeadSongDog mentioned comes from Traboulsee's subsequent evaluation of venous occlusion using a different, better imaging technique, catheter venography. Traboulsee et al. reported that actual direct imaging of the blood vessels revealed occlusion to the extent called for by Zamboni's CCSVI hypothesis was actually very rare. Only one subject in each group (MS patient, sibling, unrelated control) met the CCSVI criteria. While having only one positive subject in each group makes it difficult to clearly compare rates across the three groups, it is quite sufficient to make the much more important point that "CCSVI" is actually quite rare in both MS patients and in the general population.
4. Finally, Traboulsee et al. compared ultrasound and venography findings for individual blood vessels, and showed that the sensitivity and specificity of ultrasound for occlusion was pretty iffy. (About two-thirds of all three groups had narrowing in at least one vein by venography, so again the sample sizes were large enough to do meaningful statistical analyses.)

Points 1 and 2 are what I would call the biggest "nails" in the coffin of CCSVI-causes-MS. Point 3 backs them up, and point 4 is a useful cautionary note. TenOfAllTrades(talk) 21:05, 6 December 2015 (UTC)

Thank you Ten. The one-offs were 1/65, 1/46, and 1/32 in three groups. Even the characterization of these as 2%, 2%, 3% respectively is rather shoddy work to my reading, but the real point here is that after almost two years, there is still no secondary source available. It clearly was not taken as conclusive or there would be. LeadSongDog come howl! 01:34, 7 December 2015 (UTC)

Yes we have worked hard to keep hype about the existence of this disorder out of the article. This paper is not "the nail in the coffin" it is simple another nail in the coffin. Doc James (talk · contribs · email) 06:51, 7 December 2015 (UTC)

The term "death knell" was used in the medical journal Lancet to describe the results of the UBC study. My initial concern was that User talk:Doc James's edits involved removing this result altogether. I still feel the current summary doesn't adequately convey this point, in particular - the statements by Dr. Friedemann Paul of Germany and Dr. Mike Wattjes that the study has found "no link between venous narrowing and multiple sclerosis." However, I am willing to reduce the size of this citation if it is felt that it is UNDUE.(Hyperionsteel (talk) 23:12, 7 December 2015 (UTC))

Have summarized it further. We should really give no weight to this paper and just stick with reviews. Doc James (talk · contribs · email) 07:58, 8 December 2015 (UTC)

I still think that the article in the National Post should be included as a reference. Other than that, I'm happy with the current summary.(Hyperionsteel (talk) 01:31, 9 December 2015 (UTC))

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Heading

Will the page include this information? SIR: ‘Liberation Therapy’ Ineffective As MS Treatment http://www.doctorslounge.com/index.php/news/pb/70564 137.186.93.131 (talk) 17:47, 10 March 2017 (UTC)

Not a sufficient source to include and we say it already. Doc James (talk · contribs · email) 18:27, 10 March 2017 (UTC)

Why did some people appear to get better after this therapy?

EDSS decreased for many people who underwent the procedure. Is there any information in the article about why this happened? I read an article about parasympathetic nervous stimulation that suggested balloon angioplasty was having a parasympathetic effect. 79.97.165.109 (talk) 00:28, 27 November 2017 (UTC)

The placebo effect itself can have a significant parasympathetic effect. --sciencewatcher (talk) 05:04, 27 November 2017 (UTC)