Tuesday, May 24, 2022

Comments by Resilient

Showing 4 of 4 comments.

  • I strongly echo what AltoStrata and RybaZone have written.

    And will add that stepping off at 1.0mg is not a low dose to discontinue for many, far from it. We know this from observing years of consumer lived withdrawal experience, but also now recent studies confirm and help educate us on receptor occupancy rates in context of hyperbolic tapering (or exponential decay).

    Perhaps give a read of this study by Horowitz and Taylor:

    https://www.thelancet.com/journals/lanpsy/article/PIIS2215-0366(19)30032-X/fulltext

  • Hi James

    Thank you for your generous reply. I had felt there were many missing pieces to this blog and it’s comments, that you might not have been aware of, so wanted to fill in any gaps. I am pleased that it may have helped see the entire FB withdrawal support landscape.

    When I started my groups, your story was one the one’s we followed closely for a long time. It gave us hope. It made us feel not so alone and it helped fuel my fire to want to do more. So thank you so much for that.

    I truly hope this entire exchange has not eclipsed or diminished in any way all the goodness you have brought to our community for these many years. Much sincere respect to you for all of it!

  • Hi James

    Just listing some things you may not have known.

    – Did you know that many of the existing withdrawal Facebook groups you have disenfranchised publicly on this blog in favor of ICI and SA have admin teams that have been doing it for 8-10 years, non-stop volunteering their own spare time every single day? I don’t know if you have any thought how your blog may have made them feel about their decade long dedication and contribution to the withdrawal community. IMHO, they deserve to be praised not admonished.

    – Did you know that many of these groups have polls ran regularly that are several years old capturing essential and relevant membership withdrawal data, some 3 generations of memberships? One group has 153 polls (withdrawal data sets) run round robin regularly. This data represents the vast consumers’ withdrawal lived experience. Where you have implied our groups are just going by one given individual’s experience, that being of any given admin team member. This is just not so.

    – Did you know that many of those teams are staffed with engineers, architects, medical & university professors (PhDs) or equivalent academic stack holders of varying disciplines that innately know to survey, data mine and “spreadsheet obsess” from day one in order to track and understand the withdrawal wide range of experiences and trends of their withdrawing population?

    – Did you know there is a thing called hidden Facebook groups where the general FB population cannot see or access them? And did you know that many of those long standing more mature withdrawal groups may be hidden?

    – Did you know that a FB group called the HUB maintains a cohesive membership of all the withdrawal FB admins, moderators, founders and advocates across the internet (39 groups in total) where we all share our BKMs (best known methods) for all things withdrawal related? Or that the HUB’s withdrawal groups represents 150,000 withdrawing consumers collectively to date? Or that SA and ICI are also HUB members where the FB groups proudly leverage their widely held tenants and principals as models to follow for their withdrawal processes?

    I would venture a guess that these 150,000 withdrawing consumers might not share your sentiment that these groups are “unwelcoming or rigid”. We constantly hear praises from them such a “this group is a life saver”, “I would be lost or gone without this group”, “thank God for this group”, this group is a godsend”. “You guys saved me and my families life”.

    I think you get the gist. We know we are not perfect nor do we know everything, No one does in the w/d environment. We know we are a WIP, always. And always learning. Our main concern is to help people (and their families) get through this life altering experience the safest way possible. Because that’s how we all look at each member, that there is a family that is also being impacted by what they are going through.

    – Did you know that up front agreed to rules, entry questions and mission statements are greatly emphasized and required to be read and agreed to by every new member PRIOR to ever being approved to join these groups? And did you know that agreement is stored automatically and intentionally “by FB” against each member’s profile for admin team future reference to support moderation actions.

    – Did you know that any member that breaks the rules gets “3 CHANCES” before being removed, which is also part of the agreed to entry questions that all new members are made aware of and agree to?

    – Did you know that FB has strict community standards (CS) that groups are required to follow under threat of receiving violations for members not adhering to them. This includes but not limited to content such as vax, benzo, opioid, ketamine, psyiliban, suicide etc., the list is very long and varying. And if a group receives 3 violations they are removed from FB’s search engine (a silent death) or indiscriminately shut down by FB. And did you know that these FB withdrawal groups incorporate those FB CS into their rules which all new members also agree to?

    – Did you know that these groups go to great lengths to leverage and use nearly every capability and feature offered by FB to keep their groups optimized, safe and running to par solely for their withdrawing memberships benefit? And did you know that these admin teams also belong to FB’s power admin group, sponsored by FB itself?

    – Did you know that these groups have a % population of providers (medical doctors and psychiatrists alike) within their membership (we track them because we love and use data) that regularly post about how much they have learned from these groups and that they had no idea withdrawal was real, thanking us profusely and publicly for educating them on tapering and withdrawal from reading all the withdrawal stories and our collateral? Ask me for samples of these providers posts gushing about us, James. I’d be more than happy to provide them.

    – Did you know that these withdrawal groups use single source collaborative sharing for their withdrawal and tapering collateral and store it under topics and keep it updated and relevant solely for our memberships benefit?

    – Did you know that these groups “IN WRITING IN THEIR TAPER COLLATERAL” recommend no more than a 10% drop (reduction) of current dose “AS A FIRST TEST DROP” so one may know what their withdrawal tolerance level may be. And from there you listen to your body and go at your own withdrawal tolerance pace (sans SA)?

    – Did you know that when a group allows chaos and cowboy-devil-make-care-behavior in a group by not establishing rules, that unwitting new members advise vulnerable members to CT or do 50% drops (halving) or alternating doses as a means to taper while being cheered on by other unwitting new members, and that your group will most likely experience suicides as a result? Years of experience as admin team members has shown us this, sadly.

    – Did you know that when you do not respond to the FB groups comments on this blog of yours, but skip them and respond to SA instead, that we again feel even more dismissed and disenfranchised?

    – And finally, did you know that you could easily flip your LTW group from a “discussion only” group to a support group. Then you could invite all the CT, 50% drop & alternating doses people to your membership to support them in their endeavor to swiftly and haphazardly discontinue. It would work well since you don’t have any official rules in LTW. Sounds pretty scary and daunting, we know. But that is what we see in droves of new members coming into our groups on a daily basis despite the emphasized rules that they agreed to.

    On a more personal note, I would again invite you to meet with us so we can have an open and honest dialogue about this topic with the sincere intent to level set and reconcile these assumptions. It’s only natural for the FB groups to want to fight back when we see we are being misrepresented and bashed, and now unheard, by one of the long standing withdrawal entities, MIA. We very much want to work together and not against one another. No one gets anywhere when there is infighting. It severely takes away any gains made towards all of our common goal and the cause in general of which we are all very passionate about. It could cripple and fracture us in ways that can be a detriment to our withdrawal community. Please do think about contacting me, you have my email from my MIA profile.

    It’s only fair to understand our side of this James, and an added benefit is you will then know how we all operate. Looking forward to hearing for you.

  • Some really great points with a key takeaway that there is no shortage of ambiguity when it comes to withdrawal. Thank you so much for this blog.

    Regarding the forums in question. Hope this suggestion below is received with the sincere respect and spirit intended.

    Wondering since these forums in question are likely part of the withdrawal community (aka partners in advocacy), would It have been a better first line choice to openly meet with them to understand the issue nuances at hand along with it’s leadership & processes of the forum in question before blogging on MIA about a perceived problem with a group (rigidity & unwelcoming)?

    In the interest of fairness, I think initiating some kind of “collaboration model” would do wonders for fostering a more cohesive withdrawal community as a whole rather than blogging “you may need schooling” based on what looks like may be only half the story. I am sure they would very much welcome and appreciate the olive branch and a chance for an open conversation and to collaborate. And, both you and them may learn something new.

    Thank you for listening.