CCSVI on Wikipedia, Facebook, Youtube, ...?

ibex · Post by **ibex** » Fri Jul 17, 2009 3:43 am

Hi

I live in Switzerland and speak German. There are two German forums I know where CCSVI is currently discussed.
http://www.ms-forum-weihe.de (Germany, in German!)
http://www2.multiplesklerose.ch/forum/v ... f=3&t=1862 (Switzerland, in German!)
BTW: I'll soon start a thread in the French speaking forum of Switzerland, and maybe France

This subject is very important for me.

I think it's important to distribute the ideas. But in the German or English Wikipedia I haven't found any information to CCSVI in relation with MS.

In my opinion to be present in Wikipedia is important since mostly it's the first source of information for patients.

Hey, this isn't a strange theory, there are already results! Thanks to Zamboni.

Therefore, I propose to work on Wikipedia.
I think credibility is very important. Thus, I propose to produce high quality contributions (with pros and cons, correctness, references, ...).
Maybe in a joint effort.

Work that I see for the moment:
- add CCSVI hypothesis to MS article
- write an article to CCSVI
- add articles for important persons (Zamboni, Schelling, ...) or institutions (Fondazione HILARESCERE) involved in CCSVI research

I think there is enough know how and enthusiasm present in this forum to do this job.

Are there people that already have experience in writing Wikipedia articles?

Are there persons that are interested in working on Wikipedia?

In a first phase, I propose to work only on the English version and later do translations.

If necessary, I can translate the English version to German and with some help to French.

Ciao,
Ibex

Post Scriptum: See later postings for Facebook and Youtube, other people had these ideas.

whyRwehere · Post by **whyRwehere** » Fri Jul 17, 2009 4:16 am

I think that is a good idea...I love looking things up on Wikipedia....but I can't write it for you, because I am not good with writing factual reports...but not so bad at editing...I'll read it anyhow.

Terry · Post by **Terry** » Fri Jul 17, 2009 4:37 am

Are there people that already have experience in writing Wikipedia articles?

I think Jimmylegs does. Maybe you can get her help.

Jamie · Post by **Jamie** » Fri Jul 17, 2009 5:30 am

I can help and can also help with the french, spanish translations.

excellent idea.

ibex · Post by **ibex** » Sat Jul 18, 2009 4:09 am

Hi

Before I can write, I've to read

Currently, I read the guildlines and help pages for writing articles of Wikipedia. There are a lot of rules to respect.

As soon as I know how to continue I'll post it here.

Bye,
Ibex

Sharon · Post by **Sharon** » Sat Jul 18, 2009 6:44 am

Awesome idea!

Brainteaser · Post by **Brainteaser** » Sat Jul 18, 2009 5:08 pm

How about something on Youtube?

Maybe someone could get CCSVIcam into Dr Dake's office or at one of Prof Zamboni's conferences.

Or maybe someone who has been treated could show us their 'soft shoe shuffle'.

Just an idea.

ibex · Post by **ibex** » Sun Jul 19, 2009 2:05 am

Hi

Today, I directly added the German CCSVI section http://de.wikipedia.org/w/index.php?tit ... d=62363047 since the MS article is better structured and German is my mother tongue. But unfortunately, I have to say that it was immediately removed as the CCSVI hypothesis is "original research" and citations in secondary literature are missing and this violates the guidelines. I've written a polite answer proposing to read the abstract of the Zamboni paper and to reconsider it. I'm waiting now, but I'm not very confident, since the Wikipedia arguments are more powerful.

For the English entry, I am also not very confident.

But nevertheless I propose the following process:
1) Prepare English addition to Wikipedia, e.g. where, correction, ...
2) Add it.
3) Wait the reaction.

I propose to use the tools of Wikipedia such as the talk areas for the technical discussions concerning the addition.

Therefore I've started on my Wikipedia talk page a discussion: http://en.wikipedia.org/wiki/User_talk: ... SVI_and_MS

Attention: Maybe my user account on Wikipedia will be renamed from Capra_Ibex_Ibex to Capra_ibex_ibex. So if it doesn't work, retry with the new name.

Thanks in advance for your help!

Bye,
Ibex

RedSonja · Post by **RedSonja** » Mon Jul 20, 2009 4:13 am

Try these too:

http://www.sclerose-france.com/

That is a French one that needs a bit more life injecting into it.

http://board.ms-lebensbaum.de/

Chatty forum with lots of nice people

http://www.msforum.ch/

Igeli, who can get annoyed at times.

peekaboo · Post by **peekaboo** » Mon Jul 20, 2009 5:17 am

this is really cool...

Post by **jimmylegs** » Mon Jul 20, 2009 6:59 am

in 2006 i got zero response to a proposed group wiki effort:
http://www.thisisms.com/ftopicp-20336-w ... html#20336
maybe it will be different in 2009?

ibex · Post by **ibex** » Wed Jul 29, 2009 12:32 am

Hi

I've discussed on the German Wikipedia with the main authors of the MS article. They said that for the moment is not enough evidence for adding CCSVI hypothesis to the MS article. They want more studies and results. It's too new and it is not accepted knowledge.

I'm not interested in struggling with them.

As long as my change is not accepted in the Germain Wikipedia, there is also little chance in the English Wikipedia.

Maybe, after 08.09. there will be enough papers around.

Cheers,
Ibex

Post by **jimmylegs** » Wed Jul 29, 2009 7:16 am

ibex what if you just start your own ccsvi wiki page with references and link it to the main ms article.

that's what i ended up doing when i was editing on uric acid. i don't have time for a main page edit war. that said, there's no harm trying once.

i'm looking at the main english article right now, for the first time in probably years. my first comment is that the main article should be flagged for bias because of the first statement "Multiple sclerosis (abbreviated MS, also known as disseminated sclerosis or encephalomyelitis disseminata) is an autoimmune disease in which the body's immune response attacks a person's central nervous system (brain and spinal cord), leading to demyelination.[1]".

the autoimmune THEORY of ms does not make it fact. the editor(s) lightly touch on the idea of debate only in sections 3.2 'infectious cause' and 4.1 'MS as an autoimmunological disease', where they discuss hypotheses on ms having an infectious trigger for autoimmune illness. there is no challenge the autoimmune paradigm, period.

so for starters, someone needs to flag the requirement for additional perspectives on the nature of ms in the first place.

if you were to try editing the main page, you could consider adding a phrase under 6.4 alternative treatments. you could also briefly try to mention ccsvi in section 10 'research directions' or in its associated main article entitled "Therapies under investigation for multiple sclerosis" under section 2 'Other investigations on possible treatments'

finally, you could try to add a 'see also' item and some further reading items.

my 2 cents

mrhodes40 · Post by **mrhodes40** » Wed Jul 29, 2009 8:14 am

wow JL what good thoughts.....

whyRwehere · Post by **whyRwehere** » Wed Jul 29, 2009 9:13 am

I agree with Jimmylegs, it is not fact what MS "is", so they can forget taking the moral high ground.

This Is MS Multiple Sclerosis Knowledge & Support Community

CCSVI on Wikipedia, Facebook, Youtube, ...?

CCSVI on Wikipedia, Facebook, Youtube, ...?

Reading

Preparation

Not enough evidence...