Gripes


I have been banned from a second website because of my proactive views and advocacy based upon the experiences, research and knowledge I have garnered over 41 years battling my wife's TRD which is often contrary to the collective statements and opinions of what I believe are an embittered few.  I spent over four years reading and contributing, where I could, on the original Cyberonics Message Forum until its closure and none of my posts were ever censored.  I have been banned from a VNS message forum and ECT message forum because I advocate, for all treatment options as it pertains to the needs of those suffering from this horrific illness.  I do not, nor is it my intention to endorse any single treatment option or therapy but to educate the patient and/or their support persons to make informed and un-coerced medical decisions in collaboration with a trusted, caring, compassionate, knowledgeable and licensed health care practitioner(s).  I am a very long-time support person, health care and vocal advocate for my wife, Joyce, who’s wellness comes first and I politely refuse to be discouraged and/or take crap from “can’t do” negative thinking individuals and/or web masters and their cliques.  I am here because I am tired of having my views stifled when I differ in my knowledge and opinions.  I have been upset by the refusal of two Web mistresses to encourage the debating of issues.  When I’ve differed with these individuals, challenged or contradicted their statements and/or opinions they change their tact and then accuse me of making personal attacks.  In order to control my opposition their response is to say, “Bye, Bye” as their means to eliminate contrarian views and/or open discussion.   Read their websites and judge for yourself:
The last straw was being banned from "birdbomb's" forum.  Her site came into being as Cyberonics closed their original message forum because it was being inundated and overrun with day traders and short sellers with little to no regard for the welfare of patients and/or their loved ones.  It was just at that time that the company's stock came into play.  Birdbomb was denigrating and derisive toward the therapy, management and the company, yet her posts were tolerated and none censored and she seized upon the opportunity to fill the void, although I now believe very poorly, and she invited me to moderate.  She then later banned me as I advocated for free expression and knowledge of both the bad and the good relating to the therapy and I contradicted many of her alarmist, unsubstantiated and fact less opinions.  Worse yet, there are individuals posting fact less opinions, going unchallenged and one individual alleging to be a healthcare professional who's postings of supposed factual information is actually incorrect and no knowledgeable individual is responding or challenging these statements.

The other message forum which prompted me to establish this forum is hosted by Ms. Juli Lawrence and moderated for about 5 years or more by a group of individuals (victims as they often refer to themselves) who obviously had unsuccessful results and side-effects from their ECT.  While I am empathetic and sorry for their unsuccessful experiences I am also knowledgeable that the therapy has not only benefited my spouse but others.  I am aware and accepting of the fact, as many of you already know by just coming to this site, that there are side-effects to just about all therapies and questionable efficacious benefits and that each individual is unique and accordingly respond uniquely and differently.  What I object to about both sites are unsubstantiated statements of fact, alarmist opinions, intense negativism, biased representations and the true lack of support, proactive positions and advocacy for wellness.

Instead the core groups of individuals (victims) on the ECT site I have read through the years are attacking numerous participants for sharing their positive experiences and encouragement.  Ms. Lawrence and several of their core group have advocated for the banning of ECT as a therapy option which I strongly and vocally oppose because of what appears to me to be their selfishness and all consuming thoughts of their experiences and being locked into “self” and not understanding, comprehending or appreciating the unique needs of others and the subsequent benefits others may derive.  I don’t remember all the brilliant statements I read on that site but one seems to stick in my memory.  “Don’t you know that electricity is dangerous for you? - Mary” I could list a hundred responses to that statement but in and of itself it illustrates the challenges one needs to overcome to bring some enlightenment both on the ECT forum and “birds” forum. 

As opposed to these respective web mistresses I’ve established a special area for the truly offensive and uncaring remarks that do appear from time to time from those individuals lacking maturity, intelligence and respectful of the needs of others but I won't delete the postings.  Contrary to both Web mistresses I believe in allowing someone to illustrate an advanced degree of ignorance. 

You’ll also note that when I discuss TRD (Treatment Resistant Depression) I usually refer to this and other similar disorders as mood disorders as opposed to mental illness.  The term “Mental Illness” has carried the stigmatization of these illnesses far too long and that which I oppose and battle to overcome by educating the populace to these medical disorders.

I caution one to always read carefully, reason, investigate, and validate sources and alleged statements of fact and information placed on any Internet website.  Establishing a website does not make anyone an authority or licensed healthcare practitioner and for that matter, neither am I but then again, I'm not giving advice.

Please participate in the site and I hope my efforts are worthwhile but more importantly I wish you and/or your loved one’s freedom from “the beast” TRD and/or Epilepsy.

Warmly,
Herb