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Tony Only

Wikipedia

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CHFather,

You did a stellar job pulling to help those with CH.  These guys just can't see the forest for all the trees.  No doubt they're the type that would give a birthing mother a ticket on the way to the hospital just because she was speeding.  For every rule there's an exception, they're just too stubborn to see that. :( Sad but not much we can do at this point.  Thanks CHFather!

I decided to take a break from it for a few days as I was sorta getting ticked they're so rediculously close minded.  I wonder if they're going to leave Verapamil up given it's only approx 5% effective at healthy doses and isn't even an approved medicine for CH?  I read the study regarding effacy and side effects.  38% of a CH study group had bad heart related issues after taking Verapamil.  19% started heart palipitations after taking Verapamil.  (myself included, I got PVC's (premature vetricle contractions) that took 3 years to go away after stopping Verapamil). 

NO doubt these are just some of the reasons that Veramamil wouldn't pass the scrutiny of actually being an approved medicine for CH.  But just because there are secondary studies it's allowed on Wikipedia... WTF......

J

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I don't like to sound like a broken record but I firmly believe there are CH patients involved with personal agendas. They disguise these agendas by articulating very well and calm about the "rules" which in this case are just an excuse to limit the exposure for alternative treatments. Facebook folks know to what group and people I am referring to.

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I agree with Tony about what or who is behind this.

That said, the page was a mess with a lot of bad information.

Besides people not knowing clusters, but thinking they do, added a lot of bad info. One of the reasons for that is partly due to their rules.

They will find very little secondary info on ANY cluster medications. There has been very little research and all but one drug is just a hand me down from other ailments and never tested in clusters. At least not "re-tested"

This is partly due to the fact that when something starts working, and it has gone thru other safety testing, it isn't tested again. If it works, they use it.

Take 02 for example. We have this same fight with Medicare and that's why we are going to DC.

02 has been the gold standard in cluster abortives for 60 years. but there is very little research for 02 and clusters that would fit Wiki's rules for secondary proof.

You want more proof? Ask the hundreds of thousands of cluster sufferers using it.

As we are telling CMS, it would be unethical for further testing. Do we really need to give 100 cluster sufferers placebo air and make them suffer so that Wiki, and Medicare are satisfied?

They have to decide if they want a "helpful" article or just an article.

Do they have secondary proof that the hypothalamus is involved? Or are all mentions of it based upon Goadsby's small study using MRI's?

These types of rules are what cause people to suffer for years either without 02 at all or getting a script that says use 4-6LPM. Doctors using old or censored information.

Most things people are using to help with their clusters have come around over the last 15 years and only through anecdotal information. From high flow oxygen to cluster masks to energy drinks.

People getting their "help" from Wiki will be 15 years behind.

Unfortunately, there are many people that put rules above suffering.

Bob

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Just read the wiki-talk section...holy sh..!  nice work fighting "the man" everyone.  You have more patience than me by a long shot.  Well I guess I'll give up my seeds and mushrooms, they sound too "controversial." Keep up the good work!

--Shaggy :D 

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Whoa - I don't know if I can believe my eyebones - the Shaggy McShagmeister is back and posting.  :o:)

Meanwhile I remain astounded and appalled at what a small, unbelievably misguided group (or is it just the one individual, sometimes referred to as the "Osama Bin Laden of CH"?) can do to censor Facebook discussions, wikipedia, etc. in a fundamentally evil crusade to keep CH'ers from even hearing any mention of the alternative (and easily most effective) treatments.

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What we all can do is to always link to resources that will in the end benefit patients and patient communities and never, ever link or direct people to Wikipedia or other similar sites. Starting from today I will pay attention here in Finland that Wikipedia resources will be removed and replaced with clusterheadaches and clusterbusters for an example. I think we could do our own "wiki page" here in Clusterbusters site that would cover everything (for doctors in different countries for an example) and have links forward to trusted resources. I know there is lot of information already but one page (kind that Wikipedia should have but will not have) probably would serve it's purpose, the global "Cluster headaches" page. If it's broken, fix it.

:)

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This thread is so exciting to read and follow.   :)

In my mind, a dedicated cluster body (lol, couldn't resist) patiently moving through obstacles is how we all win.  Thank you big time, for all the work you guys are doing to push forward with the Wiki project.  I personally don't think there's a more qualified group to take this on.  The patient community, really all folks searching for timely, accurate and valuable information benefit.  Our subject matter is rife with myths, so everything you guys are doing with this project has the potential to also do some mythbusting. 

I've been interested in doing more research on how Clusterbusters could gain better SEO (search engine optimization) with Google too.  Clusterbusters created a Google page and a YouTube channel in order to post the "Headache on the Hill" fundraising video this year.  What I noticed when doing Google searches after this went up, is that Clusterbusters Google page came up a few times.  Another thing, an author who agreed to donate a portion of her ebook sales to Clusterbusters did an interview with the Huffington Post. I posted her promotional banner on my personal Google page.  She googled her interview, posted her findings in our CB FB Advocacy group and here's what came up...

"Look what shows up on the first page of Huff Post Live Nancy Redd if you google it....."

1487915_473442386108526_1615839849_o.jpg

All of this makes me wonder if there's a way to use our "Google" page to increase search returns.  The GooglePlus page was put together quickly. The goal was having our own source to upload the fundraiser video, but I believe the page has potential to be used to increase traffic to our website along with sharing information in a manner that provides more mainstream recognition in the area of psychedelics & research.  Kind of feel like there's more than one way to skin a cat...gross, but you know what I mean, lol.   

This won't provide the secondary articles needed for Wiki admin to agree to cite the primary psilocybin study but if Google chooses Google user pages first as a sorting mechanism maybe we use the GooglePlus site as a first step? 

Here's the Clusterbusters Google page and YouTube Channel links.

Google Plus Page:

https://plus.google.com/117179737802015723585/posts?cfem=1

YouTube Channel:

https://plus.google.com/117179737802015723585/videos?cfem=1

;)Cindy

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I will try to explain my personal opinion about Wikipedia one more time. I think people removing everything that do not benefit pharmaceutical companies (more likely harm them) are cluster patients, they have a name and I myself have a pretty clear idea who these people are. It does not matter if we would have 100 studies. We still don't have a chance because they have been preparing for this (to manipulate via Wikipedia) for quite some time. I have been in a CH group where there was discussion about this (to take "control" of Wikipedia to keep all and any alternative treatment talk out). Now reading through this thread and the Wikipedia changes log all I see is that we have been cleverly "played out", important additions removed justified with this, that and everything possible. They are experts on this and if you Google for an example some of these users (I did, to try to find out are they people I know) you will stumble into comments like "Something tells me they are sponsored by pharmaceutical companies" or "Perhaps this is a new occupation, editing Wikipedia for companies?". Concerning cluster headaches that may be not the case but their personal agendas are too strong for them to have the power to do what they do.

If I am right, they have planned this a long time ago, been doing it for years and know how to roll it. Few of us who are interested about the truth and want to correct things do not have a chance because (I think) most of us are not manipulative, calculating or deceptive by our nature - that's just not what we do. To me it seems our best chance would be to challenge these people because games are games and they won't hold the test of time. I don't know is it possible to discuss about this with our real names. Real names would tell a lot.

Now I will give up about the Wikipedia subject. It's very sad, the state of cluster headaches but after looking into these users the state of some other conditions as well that would have efficient treatments outside pharmaceutical company field.

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