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Tony Only

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there has to be something wrong with this way of thinking...

I thought an encyclopedia was... to inform people about ALL that's going on...

Wikipedia's definition of encyclopedia

The word encyclopedia comes from the Koine Greek [ch7952][ch947][ch954][ch973][ch954][ch955][ch953][ch959][ch962] [ch960][ch945][ch953][ch948][ch949][ch943][ch945],[8] transliterated enkyklios paideia, meaning "general education": enkyklios ([ch7952][ch947][ch954][ch973][ch954][ch955][ch953][ch959][ch962]), meaning "circular, recurrent, required regularly, general"[9] + paideia ([ch960][ch945][ch953][ch948][ch949][ch943][ch945]), meaning "education, rearing of a child";[10] it was reduced to a single word due to an error[11] by copyists of Latin manuscripts. Together, the phrase literally translates as "complete instruction" or "complete knowledge".

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All,

The admin that originally blocked me has unblocked me and I have to say a huge thanks to him that he did some research and found the board here.  It was encouraging to read that he read this thread and provided some positive feedback (below).  Thanks CHFather for providing clear and accurate information on the talk page.  (which I'm now learning about ;)

It may be long but I'd like to post his note here regarding some recommendation on how we can work with the adminstrators at wikipedia to get the best and most accurate information into (and hopefully stay :)) in wikipedia.

**********************

Unblocked[edit]I see now what's going on - Jeff, you're a member of the ClusterBusters forum. I've read through your thread discussing the cluster headache article.

Basically, appearing out of nowhere to start reverting someone's edits with a brand-new account is a big red flag. Usually it's a sign of somebody with a second account; more rarely, it's someone recruiting other people to make changes to support their position on something. Around here that's referred to as "meatpuppetry" (which I personally think is a dumb name, but we're stuck with it). It's basically treated as one editor with multiple accounts would be.

Having seen your comments at ClusterBusters, you've got the wrong impression; there are no personal agendas at play here. We just have very strict rules about where medical information on Wikipedia can be sourced from, and how much of each should be used (not giving undue weight to particular opinions). Likewise, our rules require unsourced information to be removed. You can read about these at WP:MEDRS.

By the way, I'm sorry about Daniel Case's comments above. I don't know him, but he seems to have been in a bad mood and should have been polite when handling your unblock request; that tone was uncalled-for. Unblock requests here are not handled by "reaching out to a friend"; they go into a queue for any admin to take a look at.

As you've seen, some of our highly experienced medical editors are now in the process of giving cluster headache a working-over. It may not have been obvious, but it was actually in very poor shape, largely caused by well-meaning visitors dumping all sorts of stuff into it over a period of years.

I'm going to unblock your account, because I don't think you mean badly at all. However, please reciprocate on my assuming good faith by not immediately starting "a cause" and participating in edit warring.

Please pass this message on to your friends on the forum - there's no reason why you at the ClusterBusters community can't work with us here (and indeed be part of the Wikipedia community as editors). But what you and your friends absolutely must do is spend a while getting to grips with the strictness of our referencing requirements, and participating in discussion on the article's talk page. I see that your member CHfather already has. You're all welcome to, but swarming in en masse to try and argue a point by sheer force of numbers will get you absolutely nowhere and may even damage your future ability to edit. If there are things you don't understand about how we work here, just ask and someone will be able to explain.

Sincerely, — Scott • talk 01:26, 3 January 2014 (UTC)

If you read this.  Thanks Scott!!

J

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Purple,

You might not have seen my last post, but Scott at Wikipedia unlocked my account as he did some duedilligence and found and read this thread.  He provided some positive feedback on how we can better work on wikipedia to keep articles updated. 

I'm going to do my best to learn more about proper editing of wikipedia (already learning more from CHFather as I had never noticed the forum tab on the article to discuss proposed changes etc.). 

J

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Jeff,

Should I take a shot (tomorrow) at some edits to the page that might be acceptable?  If you want to do that, it's fine with me, or if you want to create a coordinated edit by the two of us (by PM), that's also fine.  I'm not optimistic about getting far with this because we're in the same old situation -- no medical-standard proof that psychedelics work -- plus Wikipedia's further requirement that the proof should come from secondary sources, but like I say, I'm happy to try any way you want.

Jerry

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I suppose this section of Wikipedia does not fall under the rule of their medical team?

http://en.wikipedia.org/wiki/Psilocybin#Medical_research

anyways this paragraph made it to Wikipedia

Psilocybin has additionally shown promise to ease the pain caused by cluster headaches,[153] "one of the worst pain syndromes known to mankind."[154] In a 2006 study,[155] half of cluster headache patients reported that psilocybin aborted the attacks, and most reported extended remission periods; similar results were reported for LSD.[151] A 2011 review of alternative headache treatments concluded that, despite flaws in the study design, these results suggest that LSD and psilocybin may warrant further study for use in the prevention of cluster headaches—only subhallucinogenic doses of the drugs are required for effective treatment, and no other medications have been reported to stop a cluster headache cycle.[156]"

Could some of these sources be of any help?

153 ^ Halker R, Vargas B, Dodick DW. (2010). "Cluster headache: diagnosis and treatment". Seminars in Neurology 30 (2): 175–85. doi:10.1055/s-0030-1249226. PMID 20352587.

Jump up ^

154 Husid MS. (2007). "Cluster headache: a case-based review of diagnostic and treatment approaches". Current Pain and Headache Reports 10 (2): 117–25. doi:10.1007/s11916-006-0022-2. PMID 16539864.

Jump up ^

155 Sewell RA, Halpern JH, Pope HG Jr. (2006). "Response of cluster headache to psilocybin and LSD". Neurology 66 (12): 1920–2. doi:10.1212/01.wnl.0000219761.05466.43. PMID 16801660.

Jump up ^

156 Sun-Edelstein C, Mauskop A. (2011). "Alternative headache treatments: nutraceuticals, behavioral and physical treatments". Headache: the Journal of Head and Face Pain 51 (3): 469–83. doi:10.1111/j.1526-4610.2011.01846.x. PMID 21352222.

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CHFather,

Yes please.  You're definitely a much better editor than I.  :) 

I've been reading the rules in wikipedia and I understand (but don't agree with) the catch 22 the article is in.  Primarily, It's been categorized as a medical article so the rules on Wikipedia say it has to fit secondary medical review which there is little to none for LSD, Psylo, LSA etc.  Even though by the primary reviews they work significantly better than the horrible stuff the doctors are killing people with every day.  It's sad but don't see any way to get REAL help for people into the article w/o secondary medical reviews.

I like your approach CHFather, and will assist where I can.

J

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I am continuing the conversation at the "talk" page.

Could some of these sources be of any help?

Thanks! I think the fourth might be very helpful, if it is what I am understanding them to mean by a "secondary source."  I didn't see anything about psychedelics in a quick scan of the first two articles you listed -- did I miss that?

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Glad it could maybe help, and by the way Bravo, THMH, for your efforts and actions in this, when I suggested CHfather to take over, it was mostly because you couldn't anymore at that time for you were banned. But also I know for sure that CHfather is well organized and knows dam well all that's been published on here... After a while, I realized that my proposition could have been perceived negatively by you... it seems I'm excellent at putting my foot in my mouth

Well to answer your question, CHfather, it seems that the first source mentions psilo and clusters, but I don't know where and how to find these documents.

If you loook at that paragraph closely, source 153 seems to be the source of this sentence here: Psilocybin has additionally shown promise to ease the pain caused by cluster headaches, source 154 seems to only refer to clusters (not psilo)

But I had missed one, the source 151, which is the source for this sentence here: half of cluster headache patients reported that psilocybin aborted the attacks, and most reported extended remission periods; similar results were reported for LSD.

151 Vollenweider FX, Kometer M. (2010). "The neurobiology of psychedelic drugs: implications for the treatment of mood disorders". Nature Reviews Neuroscience 11 (9): 642–51. doi:10.1038/nrn2884. PMID 20717121.

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cool  8-)

CHfather has been doing excellent work with the encyclopedians on the "talk" page of the article, although not much has changed so far in the article per say.

It's my understanding that the article will be totally re-written because the they seem to say that the phrasing is terrible...

there are two main things that CHfather has stressed: trying to include the fact that CH is "suicide headache", no ordinary affliction, which can justify relying on alternative treatments  (that part seems settled now as far as the "talk" page goes),

and of course trying to find good (for them) sources to possibly extend the mention about psychedelic treatment to more than simply a mention.

there are (was) a few other very strange sayings in that article, like the fact that only 4% of clusterheads use Verapamil, which seems to me like ... imbécile to say (must be at least 40%). CHfather's work got them to change that part, but they changed it to something even more imbecile: "Verapamil was previously underused in people with cluster headache"

CHfather has also stressed the importance of oxygen therapy, but all in all, the encyclopedians don't use logic, they use sources... and it seems there is not that many (valid) sources for that.

The encyclopedians say (on the talk page) that the article should reflect the reality of what 95% of the treatments are "(...)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. "

But the problem here is that Verapamil is clearly largely used to prevent CH, we know that, but there seems to be very little "secondary sources" saying that.

Well I think it's a long process and that patience is recommended. To my understanding, the article will change in the near future (will be all re-written). We will see how it turns out and can ask for more changes after if needed... well that's the way I see it anyways.

I have read the page in many languages using Google translate (and my 1st language), and each present things somewhat differently. The French present it as a vascular-neurological disorder, and that's how French medical community seems to see it too, even though it seems clear to me it has not much to do with vascular issues...

I think the best is to see it as a long term process with the encyclopedians.

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It must be very hard work being a Wiki administrator.  I suppose they're often dealing with subject matter with which they're not completely familiar (surely not as familiar as the "interested parties" who show up with a point to make or an axe to grind), and they have high standards to uphold in terms of sourcing, and there are several of them working on this page, which must make them hesitant about stepping on each other's toes with edits.  They have been quite generous about letting me put in my two cents here and there, and being responsive to that.  I have offered to help with an edit of the whole page, but my offer hasn't been accepted (yet?).  I'm interested in presenting CH accurately, not just for people with CH who might come to it, but also because I think many of the family and friends (and bosses, and co-workers) of people with CH might go there to find out more about what people with CH are going through. And I'm interested in being sure that psilo/LSD/LSA/BOL are at least minimally represented there so that people with CH learn about them (since they're probably not going to hear about them from their doctors).  As long as I'm accepted there, I'll do my best to help make the page better and to try to achieve those two goals.

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All,

From the discussion in the wikipedia talk page, I might as well be talking to a brick wall. :(  Thanks CHFather for applying your written tallents!  It's clear that the medical writers really have NO regard for helping anyone only following the "Rules".  The entire population of the planet could die and they'd still quote the "rules" as a lame excuse for holding the status quo.  I definitely understand the reason for the rules on Wikipedia, but as everyone here knows rules don't exactly apply when you're next option is someone cutting on your brain.....  Geesh....

I'm curiously investigating a separate avenue and so far can't get a good understanding on how Google works with "paying" for placement in search results.  Anyone familiar with how that works?  I've read their page regarding the "bidding" process. 

How does one Buy placement in Google search results?  I certainly don't think wikipedia is paying for their placement, so logic might follow that it wouldn't cost much to be #1 in the search results for "Cluster Headache"

J

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as far as I know, with Google, it will always be the most popular/relevant page that will rank first. Paying Google, I'm pretty sure, will only bring suggestions in the right column... but I realize now there doesn't seem to be a right column anymore... is it me??

Google might change, but

For Google, it's important that any search brings relevant result, not commercial paid for any kind of crap. (that's what the success of Google was built on)

LOL, I guess my answer to your question is: I don't know

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Once upon a time I remember a big stink that Google was selling search result placement.  Unsure if that's not around anymore as I can't find it.  I have found add placement purchasing (I think it's those adds that show up at the top of the search results list based on the searched keyword).

J

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From the discussion in the wikipedia talk page, I might as well be talking to a brick wall.   Thanks CHFather for applying your written tallents!  It's clear that the medical writers really have NO regard for helping anyone only following the "Rules".  The entire population of the planet could die and they'd still quote the "rules" as a lame excuse for holding the status quo.  I definitely understand the reason for the rules on Wikipedia, but as everyone here knows rules don't exactly apply when you're next option is someone cutting on your brain.....  Geesh....

As my pappy used to say, "It's a narrow minded person who can't see an exception to the rule."

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I might as well be talking to a brick wall

It does feel brick-wallish regarding psychedelics--but we're not finished yet.

We've made some progress--there is now agreement (it seems) to include "suicide headache." This is important to me because it conveys to other people how bad CH can be.  A lot will depend on where and how that phrase is incorporated.

Regarding psychedelics, what we seem to need is some textbook or other "secondary" publication (such as an article in a substantial journal summarizing treatments for CH) that recognizes psychedelics as a possible form of treatment.  This is why Jeff and I are frustrated -- we can come up with the "primary" studies reported by Sewell, Halpern, Passie, and others, but as you might imagine  there doesn't seem to be much in medical textbooks or big journal articles highlighting the use of psychedelics.  I've thrown some things at them, as has Jeff, but they've been resisted. Purple has provided me with some good things . . . but not good enough. As Jeff says, Wikipedia's standards for medical entries are understandably tough, and we haven't been able to persuade the guardians of those standards that there's a case here for relaxing them just a bit, or that what we have meets those standards.

If anyone has that kind of "secondary source," or what you think might be one, please PM me with it (and a link, if possible).

If that fails, Jeff is right -- other ways than Wikipedia will have to be relied on to inform people that this option exists. (There might still be some mention of it in the Wikipedia piece, but that's not certain.)

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A couple of comments:

Regarding wikipedia

What you folks have been dealing with is what everyone deals with who tries to add useful information to wikipedia. wiki admins have been called "The 21st century book burners". Anything they see that they don't care for -- they delete.

Yes, wikipedia has rules, but in the same manner that most lawyers view the law not as the arbiter of justice, but as something to be manipulated to gain their desired result, most wiki admins wield the site's rules in the same way.

Regarding google search

There are two types of google search results: organic and paid. Paid search results show up at the top of the page in the shaded box, and google now labels them as "Ads related to Xxx" where Xxx is the term you searched for. Organic results are determined by google's INCREDIBLY complex algorithm, which they are constantly refining -- but their goal is to return the "best" search results. That's how google got to be Number One. HOWEVER... research has shown that users do not differentiate between paid and unpaid search results. (Whether this has changed since google added the "Ads related to..." text to paid results IDK, but I doubt it's changed much. It's at the top of the page and shaded. So it grabs people's attention).

The way that you buy paid search results on google is with http://google.com/adwords. Explaining adwords is beyond what I can cover here, but basically, the more desirable a search phrase, the more google charges for it. (I would venture to bet that "cluster headache" is not that desirable a search phrase). The desirability determines a price range, and how much you pay within that range determines how frequently your ad appears in the two paid spots.

This is an oversimplification but gives you the basic idea. it's easy to open an adwords account and bid on a search phrase ("keyword" is the term google uses). Just go to the site and check it out.

-Platy

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Not about Wikipedia in general but concerning the cluster headache page I would not forget the possibility of personal agenda. Meaning just one patient (or patients) who do not approve alternative treatments, no matter how efficient, general or studied they are. For simply following some "rules" all this is sounding too much. I remember the fella who tried to shut down (or actually did) the CB site and quite a few his colleagues.

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I have to commend yet again CHFather's writing skills.  Honestly he's doing so much more than I could ever do over at wikipedia.  The debates have been healthy, polite and to the point, but it seems the admins just don't care about anything but following the rules.  Regardless of the ethical results (pushing cutting on someones brain over taking pill)

Of the avenues I'm pondering is why haven't there been any secondary studies on Psylo it seems just ONE good secondary study would be enough to get placement of Psylo.  Is it Money? The Dr risking credentials?  Other?  I believe there's several doctors that have joined the board (and support if not in script form, but in ethical form) the use of Psylo. 

What's necessary to have a secondary Dr review / paper published?  Is a secondary study just having a different doctor review the primary study and publish either agreement or dissagreement with the primary paper's findings?

J

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yea, they seem to pick and choose which rules to follow in wikipedia.  I found a plethora of medical articles that all only list primary studies. 

Honestly I can't even find a secondary study on Verapamil for CH, only primary studies.  (by their rules shouldn't be allowed either)

J

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Thanks Platypus for a clear explanation. Can I conclude that it would be possible to have Clusterbusters on top (shadowed, paid) of any Google search for "cluster headache"?

about Wikipedia... this is then total contradiction from them if no secondary sources are available for Verapamil, since they claim: "(...)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. "

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Thanks Platypus for a clear explanation. Can I conclude that it would be possible to have Clusterbusters on top (shadowed, paid) of any Google search for "cluster headache"?

Theoretically yes. It's a bidding process. Here in the SF bay area I only get one paid ad when I do a google search on "cluster headache", an ad for Excedrin. I refreshed my browser multiple times, clearing the cache each time, and that same ad always came up. That tells me Excedrin has paid for the keyword "cluster headache" and no one else in the SF bay area has even bid. So Excedrin might be paying a penny/month for that ad. In Des Moines, Iowa there might be a neurologist who has bid locally on "cluster headache" (you can do that), so he might be paying a nickel/month and Excedrin might be paying a dollar/month, and users in Des Moines see Excedrin's ad 20x as often as the local neuro's.

I believe there are online tools that can figure out how much you need to bid on a keyword phrase to get it to show up a certain percentage of the time. If not, you can just experiment w/ adwords and do tests to see how often your ad comes up.

about Wikipedia... this is then total contradiction from them if no secondary sources are available for Verapamil, since they claim: "(...)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. "

Oh, heh, that's another thing about wiki, it's totally inconsistent. The little school marms can't possibly monitor the whole thing, so lots of pages slip under the radar and break all the rules. It's unfortunate that the CH page has caught some frustrated little admins' attention.

-Platy

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I'm sorry to say that I have failed at Wikipedia with regard to inclusion of hallucinogens as a treatment.  By their standards, there just isn't enough medically-verified evidence to include it.  I threw everything I could think of into the pot, but it wasn't enough.  As one of the editors wrote to me, >>The fact that there is to date one study on psilosybin (and it's not even a controlled study, it was interviews) is not going to change no matter how many secondary sources we can dig up that talk about that one study.<<  Given that Wikipedia has a strict policy about what it will use, I had nothing to come back with except, ultimately, a plea that mentioning these substances could help people.  I think I was/we were given a fair hearing.

I don't think the page has actually been changed yet, and there still seems to be some possibility that maybe there will be mention of psilo/LSD under a different heading, such as "Research" . . . I guess we'll see about that.  I'm sorry that I couldn't do better.  If anyone wants to read the exchanges there, they are at https://en.wikipedia.org/wiki/Talk:Cluster_headache, mostly in the "Back to Psilo" section, though some spills over into other sections.

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