Hello,
I have exclusively contributed to the Cluster Headache page for some time, as it was an outdated, non-factual mess.
Any person seeking to define, diagnose or otherwise clarify the condition of "Cluster Headache", due to Wiki's Search Engine Optimisation (SEO), inevitably lands on the wiki page first. I a condition users seek to define in terms of suicidiality, one would think that puts Wikipedia in a position of fair responsibility in reporting the facts, as they stand.
Users here demonstrate their grammatical and semantic prowess, without regard for current medical evidence on the condition and it would seem, with little to no personal experience with the condition.
I am not a Wikipedia expert.
I do however have 35+ years experience with my own Cluster Headache condition. As a support forum Moderator and Administrator, I have the collected accounts and interaction of hundreds of other Cluster Headache patients, with whom I work daily for solutions.
I frequently communicate and work with my treating specialist, a world leader in Headache research and fact check everything I add, modify, or delete with specialists in the condition.
Often it is my close personal relationship with these specialists that sees them direct me to the latest research findings, which are then brought to the Wiki table for much deserved scrutiny.
I have completed over 70 drug trials in Cluster Headache, generated over 3000 pages of literature and patient assistance resources on the condition. I have conducted patient advocacy and constructed help services, I have patient experience, as many do. My individual patient case studies have formed the basis of many clinical trial investigations and Journal entries.
I may not be a Wikipedian. My grammar and punctuation may not be perfect for all Wikipedians. I do feel qualified to speak about my condition, where others are not.
I do consult with some other patients, some not as well researched, or as articulate as they would like, and specialists, who feel enthusiastically that I am qualified to speak on behalf of a condition I share with them.
I have access to the latest advances in medical research on Cluster Headache and other Headache conditions.
I am growing tired of seeing current, timely, relevant, factual information deleted by people are not suitably qualified to write about a condition with which I have vast experience.
One would think that an experienced Wikipedian would take the information I have to offer, in the spirit in which it is offered. I do make mistakes and I welcome edits and corrections, in the pursuit of truth and fact. I am grateful for the edits and citations my input receives. I am also indebted to the objectivity and editing skill of all who contribute and make this article better.
I am happy to see the article revised, stripped down, made "to the point", so grateful. But also, disappointed to see many many hours of locating the latest 2012-2014 research links removed by punctuation police who deem these links spurious, without basic revision it would seem.
I have the condition. I talk with dozens of patients who do, daily. I have access to direct consultation with the principal developer of Triptans. I check the medical Journals, unlike some, it would seem here.
Example, the Neuromodulation section is repeatedly removed. I wrote that section after consulting the head of the Australasian Neuromodulation Society, who is also a surgeon. I cited it using current and available medical evidence. Editors here make assumptions that all neuromodulatory mechanisms are surgical - this is wrong. External devices are being used. They are non-invasive and DO NOT require surgery. I have cited this, but it is removed, repeatedly.
Editors here do not fact check this before removing the section, repeatedly.
If "Wikipedians" wish to take on the responsibility of speaking for all those with Cluster Headache, then there is little hope for others' medical conditions being adequately explained, articulated, or assisted with by Wiki's definitions and/or articles.
I recognise the expertise of Wikipedians and defer to it on all matters Wikipedia. I would expect Wikipedians to recognise the vast experience of someone with my experience in Cluster Headache who edits but one single article and defer to that.
Check me. I am always cited, referenced and backed by literature that people either choose to ignore or cannot access FULL ARTICLES, as medicos can.
I see no reason to continue to offer hope to cluster headache patients, under the duress of extreme pain, when others decide what we will read and how we will read it.
Sure, my take on Cluster Headache is not the be all and end all. I leave my opinion, thoughts and biases out of articles.
There is a fine line between contributor and censor.
I see no further point in continuing to contribute and help patients of cluster headache, if the platform has become "Bicker-pedia".
I shall now leave the number one definition of my condition on the internet, in the hands of the punctuation police and grammar robots. They seem to know cluster headache better than the medical profession, science, the body of literature, or the patients do.
This is a scattered mess, I realise. I tried to save my best for the patients and the articles.
I hope I have made my point clear. You've collectively frustrated one of your best sources away from Wiki. Well done.