Tuesday, May 24, 2022

Comments by Rybazone

Showing 5 of 5 comments.

  • No one has said that duration of use directly determines the time required to discontinue. Again that would be rigid. What many of us are stating here is that we aren’t rigid, but give a guideline of cut rate to start with and then the person can assess. We suggest starting with a 10% cut and hold for a month, if it went well you can do that again or increase your cut. If it was too difficult, cut back or hold longer.

    Per your example, those 29 cuts could be made monthly. A second person may be able to make those cuts every 2-3 weeks, where a third person may need to take double that time or longer. It’s about genetics, metabolism, diet, environment, etc, how your body handles it. It’s why so many say listen to your body, go at a pace sustainable for yourself. That’s the point many of us are making here is that it needs to be fluid. Some of us get like our fb groups were being attacked as rigid because our methods were not being mentioned as we state them.

  • Exactly!

    Our Facebook groups are based on the thousands of stories we have from one specific drug. It isn’t based on my individual story or another admins personal story, but the countless stories and statistics that have been collected over the years.

    Did you know that we can make polls for different symptoms and gather data? Or that some of us have mathematical/statistics/technological backgrounds and this is the basis of our group and how we gather data to best advise the majority while still being flexible?

    I completely agree with you KC!

  • I’m asking you these difficult questions as you have clearly said time and time again how “we should continue to ask the difficult questions, that’s the route towards better support rather than assuming we know everything” So I’m asking you those tough questions as you are assuming things about these other groups that I don’t think you are fully aware of. That is not fair to those of us who admin those groups who you have severely tarnished with this post.

  • But you still haven’t addressed the comments of how you know these groups are rigid?

    Here is what you said specifically:

    “I have had people contact me privately to say that they were thrown out of other support groups because they didn’t want to rigorously stick to the “10% of the previous dose” tapering strategy that has achieved almost mythological status in lay communities.“ how do you know this was the reason? Do you know that many groups have multiple rules in place? Do you know many have rules about drug names that can/cannot be mentioned due to fb community standards? There can be rules against gaslighting, promoting half dosing and cold turkey, and many more. So again how do you know what rule was broken for these people? If you are only talking to the disgruntled ex-member they could not be fully honest. Have you asked the admin of these groups? And again how do you know they follow a strict 10% rule and not a suggestion of that is a good place to start?

    “Sadly, the same cannot be said for all withdrawal advice given in online forums. Much of it comes from a good place but some advice is too restrictive and not given in full consideration of a person’s unique circumstances.” How do you know this is the case? Are you in these groups to know this is happening? Have you asked the administrators of those groups the policies they have in place?

    “If you find yourself in a support group that forces you to engage only in a certain way, then find another, more open, more welcoming group.” How do you determine what is welcoming? That group could be helping 5,000 other people but because someone gets removed makes it not welcoming? Again, have you reached out to these admin of fb groups that you seem to be implying are too rigid to actually hear the full story? I’d be more than willing to explain how I run my groups with rules and how yes members get removed for repeated rule violations. They aren’t removed for “not sticking to a strict 10% drop.” You have specifically called out these groups doing tremendous work as less than. That they are not up to par with SA or ICI. Again if you haven’t talked to the administrators of these groups you are assuming and taking disgruntled ex members story for why they were removed from a group. I’ve seen them go on a tirade in other groups after being banned, and many times they don’t tell the whole story. You have A LOT of questions to answer here. Your silence on this matter the past week has not been good for the rest of us doing this work daily mostly on our own time.

  • I feel like you made a few good points here, but I also feel like you are throwing some groups under the bus. There are many groups that have “rules” which members agree to before joining the group. Sometimes this involves making sure they will not cold turkey or promote 50% drops, as we know those are very risky. There are other groups that will remove members for not following those rules that were agreed to.

    Many groups start with the 10% rule as a baseline or a test drop and then reasses and go from there. There has only been one set of groups that I’ve seen be extremely rigid in their protocols. Have you been in these groups or asked their policies before commenting here that they are unwelcoming? Are you sure they are being rigid? How do you know that these groups are not working with the individual and not individual leaders preferences? Are you taking disgruntled members who have been removed from a groups word over the actual group leadership? Because I would have to think that the administration may have a different story. We need both sides here to know the truth.

    Shouldn’t the entire community be working together and not tearing each other apart? Or throwing them under the bus because they may have a slightly different philosophy of how a group is run?

    Length of time on the medication is only one variable in the equation. You have diet, genetics, metabolism, environment, tapering schedule, coping skills as well as other variables that all play into this. I definitely feel like some of the wd groups could take offense to this.

    Some may also find that promoting of tapering strips is too restrictive. Or that it hasn’t been independently researched like we beg of all of things other pharmaceuticals. For years the wd community has begged for more research or for doctors to listen to the third party research. When the same people review it there is no balance to what is being stated. When will a third party review or study the tapering strips?