Jump to content
ClusterBusters
Sign in to follow this  
Tony Only

Wikipedia

Recommended Posts

I want to thank everyone for your efforts on this.

It is a very important issue. I'm sorry but the board of directors of Clusterbusters just does not have the time to chase this person around the internet. We are very busy trying to get things done and make some progress.

Wikipedia is an international site that covers more than just the US and laws in the US should not stop any site from publishing the truth. Laws regarding psychedelics change from country to country. Should one person in the US decide how much of the truth someone in Denmark is allowed to read?

Whether some people like it or not, there is medical information regarding psychedelics and it should not be censored because of one person's personal agenda.

There is only one person/group doing this and he is not a doctor.

If he was a doctor, the only agenda he should have is to do no harm. Keeping information from people can harm them.

Medical marijuana is illegal under federal statutes. Should all references to it be removed from all the pages where information on it helping different medical conditions, be removed? Should it only be made available in states where it is legal?

There is no legal reason for references to the use of psychedelics to treat cluster headaches, or all of the research on it, be removed. The research itself appears on government websites.

The medical community has always understood the possible benefits of psychedelics and most have been hampered in advancing research.

The medical community supports what Clusterbusters does, what we stand for and is looking to help people with cluster headaches.

Evidence of the support within the medical community for Clusterbusters and the research, education and advocacy work that we do, can be found in the post about the additions to our organization with our Medical Advisory Board.

'nuff said

Bob

Share this post


Link to post
Share on other sites
I read one of his/her justifications that any reference to illegal substances shouldn't be included in medical information. 

So is a page about cluster headaches a page of medical information? Awful wide brush.

Wiki is not a medical journal. But even medical journals specifically run articles on treating various diseases and conditions with illegal drugs.

Treating clusters with psychedelics is acceptable for The Lancet and Neurology and Cephalalgia but not Wikipedia?

Funny if it wasn't so sad.

if Wiki is a medical journal, then there are MANY pages devoted to illegal drugs. Pages on Psychedelic therapies.

If it's just that cluster headaches are a medical journal, then research is one of the most important aspects of any medical journal. To researchers, there is no difference between psilocybin and CGRPs. They are all just molecules to them. You use the same keyboard to type up the research and same instruments to gage their actions. All the microscope sees is a molecule.

Yes there are plenty of pages devoted to illness that reference illegal drugs.

Example...

OCD

Psychedelics such as LSD, peyote, and tryptamine alkaloid psilocybin have been proposed as treatment due to their observed effects on OCD symptoms.[81][82] It has been hypothesised that hallucinogens may stimulate 5-HT2A receptors and, less significantly, 5-HT2C receptors, causing an inhibitory effect on the orbitofrontal cortex, an area of the brain strongly associated with hyperactivity and OCD.[83]

with research cited.

This is not an argument that can be won or lost. There is no legal, ethical or common sense ground that can be defended. It is just someone's misguided opinion at play and you can't win an argument with ignorance.

I am actually happy to debate psychedelics when it comes to safety, efficacy, research, legalities, dangers, you name it. heck, I'm happy to debate them on moral grounds since I need to do that when research is involved. There is always a discussion on morals and ethics with ANY research like this and trying to get things past an IRB. Fine.

But this isn't a debate. Since it can not be won, this person has decided to censor the discussion based upon his own personal feelings. We are not his children and "because I said so" is not an acceptable answer.

This is exactly the type of thinking that has gotten us to the point where it is ok for someone to spend $100,000.00 having a wire inserted into the middle of his/her brain (experimentally) (and safe because only 1 person out of the first 6 died) but it's not ok to pick and consume a mushroom in an experiment to see if that same person can stop his/her clusters.

Yes we are sometimes desperate and make bad decisions. One of those first 6 that had the DBS made a very bad decision, and died.

But I don't want that information censored either.

Over and out

Bob

Share this post


Link to post
Share on other sites

BTW guys, what we are doing is working :)

On CH.com I just read a post (titled LSD) where a person is saying "A friend told me he read about it in Wikipedia (!) as a way to stop attacks for 3 months, and thought I should look into it. " 

Just might have saved another one. 

Take that you censoring shmuck-thuck [smiley=thumbsup.gif]

-Ricardo

Share this post


Link to post
Share on other sites

I don't know is it a good or bad thing that medical field professionals here in Finland turn to Wikipedia when they have their 1s CH patient but like I said, it's important to have all things covered in there. It's silly, yes - if for an example psilocybin is covered in Wikipedia - might affect a lot how a doctor in here treat their patients. I am so happy we have this covered right now.

Share this post


Link to post
Share on other sites

Wikipedia Update,

I've been keeping an eye (and hope to continue doing so) on the CH Wikipedia page.  Since adding the LSD and Psilocybin back to the page there have been several positive edits (nothing removed!).  The person that previously removed that entire section recently added a few paragraphs regarding not approved medically etc etc.  I think was a good add and not negative at all. :)

I'll continue to check it from time to time. 

J

Share this post


Link to post
Share on other sites

Fantastic !! [smiley=thumbup.gif]

I checked the French, Spanish and Italian Wiki pages, and there would be the same kind of work to be done there, it's barely mentioned. hmmm same as the Finnish page it seems. Maybe most Fins speak English, though? It would need to be done in other languages also...

Share this post


Link to post
Share on other sites

Looks like I need some help on Wikipedia.

Someone removed the reference in the first paragraph "Suicide Headache". and I reverted it.  That person is a wikipedia administrator and apparently doesn't know anything about CH, but decided to indefinitely suspend my account and again delete the reference....  VERY frustrating.  After I reverted his delete, I was in the process of trying to figure out how to send him a note so i could explain, when my account was suspended "indefinitely"..   He  made up a reason that I was using multiple accounts, which is obviously BS.  He just got mad I reverted his change....

I'm trying to figure out how to request a review of my account suspension to another admistrator, but maybe someone else can get on and send this jerk a note.......  And explain.  I for one support the reference of the term, not out of like, but it helps explain the pain in terms those without CH can start to understand....  Not to mention Suicide Headache is referenced all over the internet AND in medical journals...... 

J

Share this post


Link to post
Share on other sites

Interesting how things go.  Try to do some good and the jerks come out of the woodwork. 

That administrator apparently reached out to a friend of his that did a second block on my account and sent me a pretty dumb email about being a dirty sock that couldn't be washed.  wtf??  My faith in wikipedia information and adminstrators is to the point of WOW...  really?

My IP has been blocked and the appeal process has been halted.  All for adding back "Suicide Headache" back to the title of the article (which is ALL over the online medical references)...

I'm really in wow at how they apparently let the inmates run the assylum at wikipedia...

J

Share this post


Link to post
Share on other sites

I just put it back in.  I grabbed a couple of citations off the internet (from Science Today and Fox News, to show that I am fair and balanced).  Maybe I'll soon be joining you in "dirty sock" purgatory!  Can't think of any better company.

Share this post


Link to post
Share on other sites

It's already been changed by Scott Martin

(cur | prev) 17:38, 2 January 2014[ch8206] Scott Martin (talk | contribs)[ch8206] . . (64,403 bytes) (-474)[ch8206] . . (Undid good faith change by Chfather (talk) - please only add citations that reach our standard for reliable medical sources. Thank you.) (undo)

personnaly, I'm not sure the suicide headache part is that important for CH, although the Trigeminal neuralgia page says it's the suicide disease, which sounds a bit weird

Share this post


Link to post
Share on other sites

Well, they just removed the LSD section...  WTF...  Another user that looks like a friend of that admin that deleted me just removed the entire section on LSD and Psylocybin.

I'm exhausted, and need some help on there.  If enough of us put it back, I see there's an arbitration process.  I see two references that say these are unsubstantianted and unverified information.  But the studies referenced are in Neurology etc...  If it goes to arbitration, I'm SURE we would succeed, but others HAVE to keep putting it back (with an explanation as to why).

J

Share this post


Link to post
Share on other sites

and changed again: all references to lsd and psilo have again disapeared

(cur | prev) 17:52, 2 January 2014[ch8206] SandyGeorgia (talk | contribs)[ch8206] . . (60,328 bytes) (-3,776)[ch8206] . . ([ch8594][ch8206]Psilocybin and LSD: way off-topic, uncited, in the wrong place, and there is already a secondary review, see WP:MEDRS in the article that covers this) (undo)

Share this post


Link to post
Share on other sites

Yes -- plus they took out the references to psilo and LSD.  I'm going to make it a cause, as much as I can, to stay on top of this. (I also agree that the "suicide headache" terminology is not crucial, but it irritates me greatly that some folks have the power to take it out.  I'm sure I can find that reference in the "medical literature" as well, but the point is that it's popularly referred to in that way.)  I guess I'm going to see whether I can communicate with these editors directly.

Share this post


Link to post
Share on other sites

via the "talk" page, maybe? so that anyone can see what is going on. I always check the "talk" page on Wikipedia, and then I can see in what way the article is contreversial or not, or evolving

Go CHfather !

Share this post


Link to post
Share on other sites

Thanks CHFather!  I'm confident your good penmanship and positive persuation will provide success. :)  The Neurology report by the 3 doctors is a stellar reference I think! :)

I see that person SandyGeorgia is going through the article with a bloody sword right now, deleting paragraph after paragraph with bogus reasons.  (clearly she doesn't understand CH! at all, and I can only guess she's associated with the admins Scott or Daniel) :(

The two admins that ganged on me appear to have a dilema that my last request might create some sort of admin discussion item and get the first guy in trouble.  I guess the Admins have some forum and internal regulatory review that happens.  AN/I ?  Whatever that is.

Sad,

J

Share this post


Link to post
Share on other sites

To be clear, there is a brief reference to LSD/psilo (at least right now), as the last item under "Other."  With these fanatical "editors" salivating at the chance to knock down whatever we add, maybe that's the best we'll be able to do.  Do they really think we're just a bunch of druggies trying to get folks hooked?

Share this post


Link to post
Share on other sites

Just reading the posts above and not checking the Wikipedia sure sounds like the administrator is one of the persons with personal agendas. I don't know what it takes to be a Wikipedia administrator but in similar sites anyone can become one. Otherwise it would just not make sense.

Here in Finland censorship and very hostile atmosphere towards all the alternative treatments has been around as long as the internet has been around. I have to say I am getting quite a kick out of how things are truly changing here right now. People who have been trying to censor and limit everybody's access to information just can't control everything anymore; the blockades are breaking.

And it's wonderful to notice how majority seems to be able to use their own intellect and have wisdom to actually use the information they learn. Awesome times !

Share this post


Link to post
Share on other sites

The way I understand it, Wikipedia is not "them", it's "us". The goal is to reach consensus between editors (us, anyone) via the "talk" page.

I think we might not have been encyclopedian enough in the way the information was provided, written, sourced, wathever...

Reading these pages should help getting to know Wikipedia (English) better, and help some of us to fit into the Wikipedia way so to  get our information through...

It seems to me it is possible to reach a consensus on the content of that article if we do it the right way (wikipedia way, I guess).

Now the article has been put on a freeze and SandyGeorgia asks for a total rewrite.

http://en.wikipedia.org/wiki/Wikipedia#Editing

http://en.wikipedia.org/wiki/Wikipedia:NOTCENSORED

http://en.wikipedia.org/wiki/User:MastCell

http://en.wikipedia.org/wiki/User:SandyGeorgia

http://en.wikipedia.org/wiki/Talk:Cluster_headache

I'm proposing that one of us gets into the debate on the talk page (http://en.wikipedia.org/wiki/Talk:Cluster_headache) to try to reach a consensus on the alternative treatments.

I'm proposing CHfather to do that, if you want to, Chfather

Share this post


Link to post
Share on other sites

I don't know if we stand a chance, though...

from the MastCell Wikipedia user profile:

"If a person edits Wikipedia largely or solely to promote one side of a contentious issue, then the project is almost certainly better off without them.

On Wikipedia, any form of real-life expertise is a serious handicap. If you have real-life expertise on a subject, do not under any circumstances mention it here.[2]"

Share this post


Link to post
Share on other sites

I just got a third email from an admin bashing me for creating multiple accounts, (which I did not).  I only have the one account and it's the same as my name here.  My IP has now been banned.  Geesh....  And all I did was make one change that apparently pissed an admin off because it was his change.  He rallies his buddies to corn hole my account.......  I'm pretty pissed, but need to get over it.  My ability to edit wikipedia is now nill... 

J

Share this post


Link to post
Share on other sites
I'm proposing that one of us gets into the debate on the talk page (http://en.wikipedia.org/wiki/Talk:Cluster_headache) to try to reach a consensus on the alternative treatments.

I'm proposing CHfather to do that, if you want to, Chfather

  Thanks, Purp.  I'm trying, on the talk page, but here's the significant part of the response I got: >>Second main issue to make sure that the Wikipedia article reflects how a medical condition is treated in the real world. For example, if 95% of doctors use drug A to treat cluster headache in reality, we should not talk excessively about drugs B-Z.<<

I'm going to try one more edit, but it seems clear to me that we're not really going to get anywhere with these administrators.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now
Sign in to follow this  

×