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Cluster Headache Help and Support >> Cluster Headache Specific >> Who here is happy with the CH Wiki page?
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Message started by John2 on Oct 25th, 2018 at 5:51am

Title: Who here is happy with the CH Wiki page?
Post by John2 on Oct 25th, 2018 at 5:51am
Hello CH site people!

Who here is happy with the wikipedia page on cluster headache?

I was shocked to see Batch's work is not there, it's been published in a journal discussion paper, so could surely be referenced there. The wiki page on CH does not contain the word "Vitamin" anywhere and yet so much PF status can be seen here.

Like it or loathe it, practitioners are using wiki and printing out pages for patients... With allegedly 7 million hits a year on that page (so a wiki person tells me) that page is probably the first port of call for any casual googler...

Thoughts from those who know CH best?

Title: Re: Who here is happy with the CH Wiki page?
Post by Batch on Oct 26th, 2018 at 3:03pm
John,

The Wikipedia web site is run by left leaning progressives and the vitamin D entries are closely monitored and edited by Big Pharma.  Accordingly, don't expect any new info on Vitamin D3 for cluster or migraine headache to appear on Wikipedia.

That said, VitaminDWiki has a full spread on preventing CH and migraines with vitamin D3.  You can find my page at the following link:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

This page has been visited by 90471 visitors since November of 2013.  Moreover, visitors have downloaded over 11,400 copies of the anti-inflammatory regimen CH preventative treatment protocol since 21 Jan, 2017 at the following link:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

Bottom line... Word about the effectiveness of vitamin D3 and its cofactors in preventing CH is getting out thanks to VitaminDWiki.

What we need now is for CHers taking this regimen and who have been on it for more than 30 days, to complete and submit the survey with their results if they haven't already done so.  This survey is located at the following link:

START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

Take care,
V/R, Batch

Title: Re: Who here is happy with the CH Wiki page?
Post by John2 on Oct 27th, 2018 at 8:05pm
Thanks Batch. That explains a lot. The CH Wiki page is controlled more or less by one individual who reverts all edits, seemingly to an agenda... It even seems an automated process... It is fishy indeed...
Wow, that's a lot of views and downloads. It's great that word of the D3 regimen is getting out by whatever means.
Thanks again.

Title: Re: Who here is happy with the CH Wiki page?
Post by Batch on Oct 28th, 2018 at 3:10pm
Hey John,

VitaminDWiki is run by Henry Lahore, a dear friend, full time supporter of the Anti-Inflammatory regimen and a one-man show.  He's my age and a retired aerospace engineer turned vitamin D3 expert.  Henry lives an hour's drive North of me in Port Townsend, WA so I try to visit with him as often as possible.

You're correct, Henry does have an agenda and it's a great one I fully support.  He spends more than 8 hours a day making sure his website provides factual information to visitors on the benefits of vitamin D3 and its cofactors. 

He keeps web crawlers running 7X24 so his VitaminDWiki web site will always have the latest in published studies and papers about vitamin D3 covered in 9,000+ Vitamin D pages which can be read in any of 103 languages.

If you read through his website, you'll see where he throws the BS flag at bogus opposition research papers and studies that try to paint vitamin D3 as ineffective and/or dangerous.

The Punch Line he uses to close all of his emails follows:

Vitamin D has been proven to prevent/treat 87 diseases

It's available at the following link:
START PRINTPAGEMultimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or RegisterEND PRINTPAGE

Take care,
V/R, Batch


Title: Re: Who here is happy with the CH Wiki page?
Post by John2 on Oct 29th, 2018 at 6:19pm
Oh no! Wires crossed! I meant the CH Wikipedia page, not VitaminD Wiki, sorry if it came across as the wrong page Batch.

Title: Re: Who here is happy with the CH Wiki page?
Post by Mike NZ on Oct 30th, 2018 at 1:36am
I'd agree with your thoughts around the Wikipedia page.

I've tried several times to update it and every single update was reverted by "Doc James". This included where I had references for everything using multiple medical journal articles, with him finding some form of fault with what I wrote or the journal articles.

Sadly a LOT of people will read the content and not get the full range of knowledge and treatment options that are available. Not everyone is lucky enough to find these forums.

Title: Re: Who here is happy with the CH Wiki page?
Post by Batch on Oct 30th, 2018 at 4:34pm
Hey John,

No problem. That said, words do make a difference.  Since joining this forum in 2006 I've tried to make sure there were no ambiguities in my posts that created confusion or conveyed the wrong message.  I use that same discipline when reading posts by others.

Nowhere is this more important than posts about vitamin D3.  Too many CHers are unaware of the health benefits made possible by taking 10,000 IU/day vitamin D3 and its cofactors or that vitamin D3 is one of the most effective CH preventatives.  Accordingly, it's important the confusion factor is low.

Take care,
V/R, Batch

Title: Re: Who here is happy with the CH Wiki page?
Post by John2 on Nov 8th, 2018 at 10:59pm
Batch, I agree wholeheartedly. I do see the D3 regimen making a fair progression across the internet and that's good. But on the other hand, the more hands it passes through outside of this site the more ambiguous it seems to become.
That's why I thought it should be on the Wikipedia page. I've had Wiki pages handed to me by ER doctors more than once, so like it or loathe it, Wikipedia is representing our condition however some individuals would like.
You should see some of the crap out there on the D3 regimen posted everywhere but here (YouTube, FaceBook pages). This is the place to come for D3 advice. The horse's mouth, so to speak.

Mike. Doc James, what can I say? An Emergency Doctor from Canada on the late shift, or so his bio says. And to my knowledge, has never suffered a CH attack in his life. I've done battle with him many times in Wiki edits. He won't respond unless on his talk page and when he does it is often condescending and brash. He reverts edits with little or no consideration for the facts. He seems preoccupied with the term "Suicide" in the CH article and always leans toward the dramatic in his edits. My edits, backed by the latest science, clinical trials, references, citations, have been labelled "vandalism" and summarily removed. And he says he's not very literate. How can one Wikipedian have so much control over one page and one medical condition? It is simply staggering. He's been removed from the board before, we can only hope Doc James the gatekeeper is further demoted so that information about our condition is not hijacked by one individual. Apologies, Doc James really pisses me off.

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