revisiting the psychiatric drug debates we've had here....

excerpt from article re:

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Harm Reduction Guide to Coming Off Psychiatric Medications.... is all about informed choice that allows one to take the risks that make most sense given one’s situation. 

Will Hall, the primary author of the guide, is a former psychiatric patient and is passionate about informed choice when it comes to psychiatric medications. Hall, no anti-drug ideologue, begins by pointing out that in U.S. society there are confusing messages about drugs, and this results in a great deal of fear:

Drugs become demons or angels. We need to stay on them at all costs, or get off them at all costs. We look only at the risks, or we’re too frightened to look at the risks at all. There is no compromise: it’s black and white, all or nothing. It’s easy to fall into absolutist thinking when it comes to psychiatric drugs. Pro-drug advocates focus on the risks of extreme emotional states, while anti-drug advocates focus on the risks of taking drugs. But it is the belief of this guide, and the philosophy of our pro-choice work at the Freedom Center and the Icarus Project, that either-or thinking around drugs is a big part of the problem.

Hall’s serious emotional suffering included “multiple suicide attempts, hearing persecutory voices, extreme mistrust, bizarre experiences, hiding alone in my apartment, unable to take care of myself.” The psychotherapy that he received hadn’t worked, and no one provided him with any other options besides medication. Hall writes, “I was under pressure to see my problems as ‘biologi­cally based’ and ‘needing’ medication, instead of looking at medication as one option among many.”

After spending a great deal of time in hospitals, residential facilities, and homeless shelters (where he lived for nearly a year), Hall began to believe that so-called “expert authorities” had failed him and started his own investigating, “I started judging my options more carefully.” That process led Hall to co-found, along with Oryx Cohen, the Freedom Center, a support community in Western Massachusetts that brings together people asking similar questions. From all of this came the Harm Reduction Guide to Coming Off Psychiatric Medications.

For Hall, “This is a guide I wish I had when I was taking psychiatric drugs. Prozac helped me for a while, then made me manic and suicidal. I was sick for days after coming off Zoloft, with counselors telling me I was faking it. Nurses who drew blood samples for my lithium levels never explained it was to check for drug toxicity, and I was told the Navane and other antipsychotics I took to calm my wild mental states were necessary because of faulty brain chemistry.” Hall used many different psychiatric drugs over several years but, he tells us, “the medical professionals who prescribed them never made me feel empowered or informed. They didn’t explain how the drugs work, honestly discuss the risks involved, offer alternatives, or help me withdraw when I wanted to stop taking them.” Hall wrote this guide because, “Information I needed was missing, incomplete, or inaccurate.”

“Making harm reduction decisions,” says Hall, “means looking honestly at all sides of the equation: how drugs might help a life that feels out of control, how risky those same drugs might be, and the role of options and alternatives. Any decisions involve a process of experimentation and learning, including learning from your own mistakes and changing your goals along the way.”

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Full article: A Sane Approach to Psychiatric Drugs by BRUCE E. LEVINE

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No, this has not been an issue for me personally, but many of my friends have suffered irreparable harm (sometimes fatal) both from such medications and withdrawal effects..[Forrest]

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I'm dubious about these "nearly ___ percent" figures for various reasons. As the late anthropologist Lone Wolf said, becoming homeless is itself traumatic, so you're going to see a lot of situational symptoms. Another consideration is that the available programs for getting a person into housing... tend to be based on a "something wrong with you or you wouldn't be here" model. People who persist in saying, "I'm not crazy or drugged", don't get inside. This is bound to skew the figures. (Granted that coming in last in our 'musical chairs' housing market is more likely if one isn't well-wrapped, has for one reason or another alienated friends & family. Trying to organize these folks politically, as I did once, is a great way to learn the meaning of the word "ego"...)

Poor-person mental health care -- like poor person medicine, and poor person education, is a long-term ongoing scandal in this country, one that's worsened steadily since the late 60's. Given the kind of treatment that might be available, being 'mentally ill and untreated' isn't necessarily the worst alternative: avoiding being saddled with a stigmatizing diagnosis, not having authority figures telling them they "need" drugs, or that they're "always going to be this way."

Simply housing them, in a secure way, doesn't always make low-lifes easier to get along with... but it reduces stress, and takes the edge off until they can find themselves new trouble.

I'm pretty sure we need to seriously rethink what "treatment" should look like. [We won't be the first!] Mutual forbearance & looking after one another better is probably the first step...

David Nelson Seaman said:

In my workplace, I see the problem as not only one of patients not being fully informed about the outcomes of prescribed psychiatric medications, but also one of lack of funding in mental health services to the poor and homeless.

It's less a matter of poverty, or lack of information, than of misinformation coupled with heavy psychological pressures, mostly pro-medication but also in the opposite direction. A former medical researcher (not, unfortunately, researching psychiatric medications) fell in love with a young woman who was discontinuing her own meds -- followed suit, and was soon ready to check himself into the hospital. (Except that they wouldn't take him, despite the fact that all his friends know it was time -- until he decided that trying to slug a nurse would convince them. It did, but they jumped on him in the admissions process...)

A bright & sensitive woman who'd been medicated since adolescence... went abruptly off xanax, started drinking and scaring her boyfriend, got panicky when he checked her into the hospital and dumped her.

This wasn't initially, but became a case of poor-person medicine, in that after shuttling from one facility to the next, she ended up in a shock shop where the staff was recommending intensive electroshock to everyone. Which she continued after her release to a pretty nurturing board-&-care place. During a visit to my wife & me, she decided to walk the few blocks back from the taco shop alone... & when we found her, she was sitting on a curb, a few blocks away, weeping because she couldn't remember where she was, where she was going, what was the name of the facility.

She'd wanted to believe what they told her about this treatment's potential for eventually helping her get off meds entirely.

Being subject to panic attacks just about daily -- doesn't help a person be altogether objective about anything promising help. Neither does being a busy doctor, exposed to continual pharmaceutical propaganda -- or any sort of staff person -- or a family member -- or anyone else with intense hopes that something, anything, will make life easier on someone they care about.

The booklet looks to be as close to an honest and illuminating exposition of the situation as we're going to get.

It would be a good idea to separate our myths about homelessness from our myths about mental illness...

The number one cause of homelessness is lack of available housing. "Forced housing" was not a problem for any homeless person I knew.

Forced "shelter" was sometimes an issue; the biggest charity in town (San Diego) was intensely authoritarian and regimented; former clients tended to confirm what one friend told me: "They do help a lot of people, but I've been in a prisoner of war camp already, and I don't need any more of that."

Some providers were better -- but regardless of who got the contract for the city's "Winter Shelter Program", there were always more people trying to get in than available beds.

The population dumped out of the old State Hospitals (I worked briefly in one) were not the same people. If you think of the folks who used to live in the Hotel Wino before these policies set in:

"The neighborhood is being cured of poverty;

buses will carry the mop-pushers in and out" [Marge Piercy]

you'll be closer to the actual numbers involved -- although nobody really knows those numbers.

Some 25 years ago, San Diego County invited various governments and charitable institutions to form the 'Regional Task Force on the Homeless', which was proposed as a mechanism for quickly solving the problem. I mention them because -- after about five years -- They realized they were not going to "solve the problem" (largely because central to the problem were the various governments involved & their most influential constituents.) Instead, they would focus on providing dependable statistics.

In 1992, when a friend interviewed the Task Force's Director for a homeless-people's advocacy newsletter, one of the first questions asked was: "How do you arrive at your figures?" The answer: "We ask the other agencies and go with what sounds reasonable."

About a decade later, after I'd been running a tabloid called 'Street Light' for five years, got burned out & turned it over to a committee... they reprinted an article from a nursing magazine, about a San Diego clinic for poor people. The number of distinct homeless individuals who'd come to that one clinic in a year -- was several times larger than the Task Force's estimate for the county.

What proportion of homeless people are literally mentally ill, basically wandering around helpless, would have to be considered in light of that unknown actual number. Who are doing all that they can to avoid being noticed and recognized as homeless... Anybody too out of touch in that population is likely to 1) have other people looking after him, so far as they can,  or 2) without that, is likely to be picked up and jailed for some petty offence. What proportion are weird-but-functional... seems to be much higher, at least around here. Then again, if I were running an agency for "mentally ill" people I could expect to see more of those...

--- --- --- ---

What I'm trying to say about the medication issue... is that much of the care provided, at any income level, takes the form of encouragement to take dangerous, addictive drugs of dubious long-term benefit, with considerable risk of serious long-term damage. People suffer; other people want to help; few people want to look at the negative aspects of anything that promises improvement.

What would people be doing without such medications? Suffering. Self-medicating with street drugs and/or alcohol... with their own side-effects and dangers. Sometimes, working issues out via their own internal resources plus a little help from their friends. (I have seen this happen, at least once. A posse of this woman's friends, worn out weeks of 3:00 a.m. phone calls, came to her door and told her: "Honey, you've got to go in." She said, "No, give me a little longer." When she finally managed to see a psychiatrist, she told him, "All I need is something to give me one good night's sleep." Whatever he gave her "put me out in the midst of a raging anxiety attack," after which she still had a lot to deal with, but was increasingly making sense. Mileage differs...)

Closing the State Hospitals -- was intended as a windfall to the nursing home industry, most of which turned out less eager for this class of patient than the owners had previously imagined. A network of local, more personally-involved forms of care was supposed to take their place; but nobody seriously wanted to fund such an effort. I like to think that some of the old talk-therapies -- if pills weren't so much cheaper and beneficial to pharmaceutical companies -- would be a better alternative. Especially if Society-as-a-whole just started treating everyone more humanely, imposing less needless scarcity and stress on each other.

I have wanted to post something here, but I have hesitated in doing so. Sometimes something comes too close to home, as this post does. There were dark periods in my own past, which have left deep trenches into the current time, and Mental Hospitals are not exempt. . .

Having a childhood so shredded by my late father, I landed myself into the Mental Health System and much prescription medicines. I never realised the damage that was done until it was too late. I was supposedly diagnosed of: Personality Disorder, Anxiety Disorder, Panic Disorder, Post-traumatic Stress Syndrome, Manic Depression and Depression, Schizophrenia, Schizopeffective Disorder, and Stress Disorder. I took, at one point, seven different drugs up to three times per day. I have been hospitalised eight times in my life. Yet, to tell thee the honest truth, I never hallucinated so bad as I did with the medicine that was supposed to get rid of them!!

Getting off of those medicines and out of the system was a battle that I'll never fully recover from. My body's temperature controlling mechanism in the brain was damaged permanently due to those medicines. Yea, ye see why I hesitate putting something so personal on thy post?

From one hospital to another. From one pill to another. All of the Clorpromazine Anti-Psychotics and Tricyclic Anti-Depressants and Manoamine Oxadase Inhibitors the Selective Serotonin Reuptake Inhibitors not to mention street drugs. . . Yet the medicine I received from prescription was in many cases worse than the mess I got from my so called friends on the street. All of it bad!!

From 1996 until 2001 I was in and out of Mental Health Institutes. It wasn't until late 2001 I finally got off of the medicine, which in my case, was making the: "Neuroleptic Malignant Syndrome," the hallucinations, the delusions, the voices, the tactile (touch) hallucinations, the olfactory type hallucinations, the psychosis of various degrees, the seizures, the stupor, and in general all of my problems! I followed my doctor's advice when I got sick, which lasted for nearly a month, and was told to see a regular physician. I did that. I ended up off of the: Thorazine, Prolixin, Melaril, Serentil, Permentil (all Clorpromazine anti psycotics) Cogentin or benztropine, Buspar or buspirone, Trilyphon or perphenazine, Inderal or propranolol, Zoloft, Paxil, Serzone (all SSRI anti depressants), Prozac (an MAOI anti depressant), Zyprexa, Seroquel, Geodon, Resperdal (all anti psychotics of newer developments than clorpromazine types) and I ended up just taking, as needed, a synthetic derived Valerian herb based medicine Valium or diazepam. That is all I take. If left to me, I would not take that, but herbs instead!

I have taken Xanax or alprazolam, only briefly, Atavan or lorazepam briefly, all of these are Benzodiazepine Tranquilizers, which compared to the anti-depressants and anti-psychotics, are not to be mentioned in the same breath! I know because I've taken them all. . .

The worst thing to happen to thee is to awake and be followed by shadowy figures that are not really there. Yet they are as real to the one that sees them as the nose is on thy face! Whispers in the silence pressing close behind me, pressing close behind—"God help me!!!!!" See the black reflection standing still before the bedroom mirror, over thy shoulder no one's there. Attempt at suicide. Slash thy wrists. . . Mind distant. . . Nothing more. . .

Take my advice, the farther ye can stay from mental hospitals and institutes and their medicine, the better off ye will be! It might well help some, but it has never helped me. I would not recommend the anti-psychotics or anti-depressants to anyone—unless they can have absolute confidence that they can have the option of stopping the treatment or medicine if it disagrees with their body!! I can never work again, thanks to this dope. I have been on SSI since 1998. I have been even ridiculed for not working by certain churches. I have come a long way. I have scars from childhood on through to those medication years. I have a long way to go. Once ye get into a mental system, it is nearly impossible to get out. They may haul thee away to another more permanent facility. I was even strapped to the bed, put in a padded room, strapped to the wall, and in a room without a window or view. . . At one point, I would not have been able to sit still long enough to relate these things to ye, that is how bad it was! Now at least I can think. Read. Write. (Not work manual labour in the sun.) Calligraphy. I never hallucinate! I never get delusional! I'm not crazy! I have just been through two grinding mills and am still on the recovery list. . . Which is worse? Taking a low dose Benzodiazepine Tranquilizer and being more "sane" or taking the others and being "insane"??

Sorry to have gotten lengthy, but these things have been on my chest. I had to get them out. I hope none of thee will think the less of me due to these things I have herein conveyed to ye all. Hope I have thy confidence in ye remaining Friends with me still after reading this. . . .

Sometimes, back in the day, I'd take too much LSD for the stress I was under -- and would be very very happy to get a shot of thorazine afterwards, even though it would leave me feeling like body-&-mind had been dipped in something foul. A few years later, finding some friends carving up a certain cactus in the dining room, I went along with 'just a little sip' of the juice-- whereupon overwhelming turmoil, mental chaos set in... but as I restlessly wandered off down the street, this seemed like a good time to drop in on a lay shrink I'd wanted to meet. We talked briefly; he said "Take this" and everything abruptly went smooth as a velvet rug. (He said, when I asked, that the pill had been 'niacin.' Results certainly vary on that!)

I knew a guy who took LSD the first time -- and said he was disappointed. Yes, he was seeing 'hallucinations,' but normally he did that anyway.

If my own mind were often that intensely visual, it would probably make life hellish, make coping with things horribly difficult -- and yet this individual was as coherent as any of us poorsouls sharing this planet. Many people, trying to handle stress in such a condition, would be likely to get "diagnosed."

"Craziness" seems to run along a different dimension. We find people who may or may not suffer turmoil or perceptional distortions -- but show a talent for bad ideas, unfortunate decisions, pointless devastation of all lives entangled...

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My own experience of valium was as a muscle relaxant when I was getting unexplained sinus headaches... and suddenly I found I could visit the Japanese go club & win against people who'd normally scare me off the board! I went off it fairly soon after the headaches ended, with the understanding that it was potentially muy addictive. Way too pleasant! (But Timothy, I'm glad something works!)

LSD. . . I hate to say this one, but my encounter with that was while at the Mental Health Institute! Nay, that is not made up a bit. . .

Much to my dislike of such chemicals as that or others, I took it then to get the rest of that horrible place out of my head. Of course, I couldn't. The side effects of that lasted a while, then I'd see the place again the way it always was, but only worse. I was discovered. I was put into a room without one single window. Guards watching my every move. If I showered it had to be in the presence of staff! If I shaved, which then I did more of it than now, it was done under supervision. Strict. . .

To may horror, I got home, but had fouled up myself with other matters, went back within ten days of being released (in 1996). The last time I was at the hospital in Danville, VA I was in 1997 late until 1st month 1998. One fellow and friend of mine while there during that stay, as soon as I had left he hung himself!! I could not believe it was true! It was. Dead. Tired of the system. Tired of the same dullness of his monitored life there. Tired. It was a sad thing. I was shocked. 

I promised myself that if I went to anymore of these places, just to speak little and listen much. I learned that way. Craziness. . . Insanity. . . I teetered on the edge of Death and Insanity for a period of time. I have the Almighty LORD God our Father to thank for being yet here already still. 

Glad thee hast not withdrawn thyself from me. Quit being a Friend to such an one as I. I am as well as can be expected. I am not nearly as bad as previously I had been. I have made a rebound to some extent. I still have my foibles. Yet, we all have our own foibles, do we not? I still am human. I am, however, not a Bedlumite=after the fall of Bethlehem in 70 AD there was chaos and lunacy or meaning simply 'lunatic'.

Valium is a Benzodiazepine Tranquilizer. That is all that I need to do as well as I do on. I need none of the rest. Some peoples may require it and do well on it, I do not condemn. I do caution, due to the many personal experiences I've had though. . .

So often, people that are in Mental Institutes are greatly misunderstood. Not all of the time, but I've seen it. People that really don't need to be there, are there and being hauled off to Petersburg or Staunton, VA. Those are some tight places to ever try to get out of! Also, they are talked to as if they are an experiment not a person or human being. That is what I also witnessed some of. Yet there are a few kindhearted souls that work there, but precious few so it seems. . .

No longer a Bedlumite! No longer half a human, though I still struggle with that on the account of my late father's words. No longer living in Asylums or Madhouses or Mental Institutes. I'm free!! God in His Mercy released me from those prisons! The doors are no longer locked. I'm not shackled to the wall or bed. I'm not: Dumkopp~ dunce or literally dumb headed! I think clearer. I can do the things I love to do: Calligraphy, Piano Playing, Singing, Writing, Composing Poetry, or putting poetry to music called compiling music etc. How did this all happen?? The Healing of the Hand of God, touched my being and picked me up back to my feet again. . . . Pray, don't think the less of me for recalling these horrible things. 

Just Remember Me. . . 

__________________

LSD to get yourself anyplace whatsoever 'out of your head' -- No, I'd expect it would be more like taping your eyelids open! Producing some of the good effects & bad effects of dreaming -- So some people have found ways to use it to help them sort things out. But not a painkiller!

I was talking to a lady, back in 60's Berkeley, about LSD as a way to become 'more sensitive'. & she compared this to turning up the volume on a radio -- as opposed to simply hooking it to a better antenna. It seems to be more like 'turning up the volume.' More intense sound == more risk of distortion (also, some chance of picking up a signal you'd missed, but you'd need to check that signal later!)

When I was working in the state hospital (summer job) I met several people who really didn't seem to belong there. The local sheriffs, I think, would sometimes send over anyone who was simply 'too difficult' -- couldn't just take an injustice lying down, so to speak. "Unreasonable" by some people's standards, but not insane, just crosswise to the system.

I can't think of suffering as really pointless; it has to have some purpose -- but the people it happens to don't necessarily "deserve" it. It sounds like you've been through a lot, and imagine you're somehow to blame. Not so, you know! Great courage, the sort of things you've been telling us! Thanks!

In looking back, I merely wish more options or choices could have been given to me. Yet there wasn't any. It was more or less, "This is what you have wrong with you, and this is what you need to fix it." No other alternatives. Not a lot of information to pass out or distribute about things either. So, there was no "informed" decision to make, it was made for me, in my case.

The last eleven years has been like unto the Scottish Highlander that lifts a large rock, and carries it on his shoulders for two hectares (two square miles I think)! Actually, if it were not for the Compassion of God, I'd be consumed. Yet His mercies are new every morning, and great is His faithfulness!

The Greek word used for pharmacy is pharmakuse: which is spell, sorcery, witchcraft, etc. People do need to be careful of the medicine they take. I have learned that the difficult way.

Thank thee for thy words of encouragement. Encouragement is hard to find in our community. I think I mentioned that to thee some time back a bit. People were like unto vultures, sitting around watching, doing nothing more than that by in large.

Danville, VA: summer 1996 twice hospitalised at this place. I was in a car wreck in 4th month 1, 1996; a twenty foot fall on the job at Lake Vista Condo's in Bedford County; a second car accident and then hospitalised all in the 4th month 1996!! Here is proof. . .

As ye see, a picture painteth a thousand words. . . I am not the person I used to be. I have God to praise and give thanks to, for He brought me out of those difficult times. Thank thee for posting thy original post, I needed somewhere to let go of the above couple of posts—to get things off my chest as it were. A lot has changed since that picture was taken. Some bad and some very good. Again, thank thee. . . .

In my own situation, there was no group, no people, not even a doctor that I could trust to talk to. I could not always go places, because of the "figures" and "voices of many" speaking and uttering methods of suicide to me. I was "being followed" constantly. Paranoia was so strong then. (Now I just do not like to go places because it costs more than I could afford or from homeschooling etc.)

This lack of people to turn to did not hinder, in mine own situation, the healing process. The Almighty God and Father drew me to Him without another soul. I had no kind therapist or counselor, but I found one in the Great Healing Physician! There is where all of the many labels of diagnosis fell.

While not a Bedlumite that is lunatic, I do admit to being eccentric. Some of mine own making and not to be mixed with some sort of psychotic or mental condition. (Example: a friar's robe, a Dickens garb, or whatever.) That is just me. Just trying to cope with the difficulties of life by my own humour like that.

How did I get over the overly medicated stupor I was in? Nay, I did not use force, but became ill in a non-psychotic manner, was sent to a physician, and eventually got off of the intoxicating, debilitating medicines. I have the Lord of Light and the God of Comfort to thank always for that! He alone met the need of my condition. I had no meeting or group to attend at the time. I was too sick to go at one time. I had the "Thorazine shuffle," where ye cannot pick up one foot off the floor, but only slide it. Prolixin did likewise unto me.

My mind was clouded and polluted for years there. Even after coming off of the medicine, I was still under the side effects. They lingered heavily in my body for years. In the 5th month 1999, thrice I thought I would die from very bad seizures: Neuroleptic Malignant Syndrome—or anti-psychotic drug related seizures, but I was not hospitalised from them. Like Epilepsy, these terrible seizures wore off. My body was burning hot. I was stiff as a chunk of granite. I sweated profusely. I gasped in breath, as breathing was difficult. They lasted for a duration of nearly an hour or more! My poor wife sitting there just watching, never knowing what to do but pray. . .

Yet my heat controlling mechanism in the brain is permanently damaged. So my journey away from this over dose of anti-psychotics and other medicines, is one that helps me to know who my true friends are. I have found that to be so, because some people do not like to even hear of mental illnesses and such.

I keep going on. I keep steadily onwards. I reach forth towards my wee family for support. I have also a few other friends and herein I have found Friends as well. So far, I feel as though no one has placed the Meidnung—shunning on me. I do not feel as if I am placed Im der Bann—In the Ban either. (At least not that I am aware of. And I do thank Forest for this post to "air" out some things that have been on my chest for a long time!)

Do not give up. I haven't. Ye need not either, Friend Kitt! Keep thy faith. Thou hast come through a lot of hardships making thee a better person. Stronger. Able to cope and endure. The trying of our faith worketh patience. . . God is able to see thee through. Keep up thy courage, I know I need to as well. Find out what works for thee, let the rest be. At least I'm not the only one here that hath been through this sort of treatment. Not alone. . . Thanks for sharing some of thy experiences!

Friend Kitt!

Thank thee for thy words as well. We should all seek to give and receive encouragement. Freely ye have received, freely give. . . Mat. 10:8. Just knowing someone else has "been there" and "witnessed" yea, and "gone through" some of the same things helpeth. Why? For I may then see myself as the Bedlum here, since everyone else is "sane."

Thank thee for really being able to understand in a personal way. Thou hast been through an ordeal of significance and hast been able to "walk away" like I have still alive! I know some that are not here due to the hangman's noose they made in the ignorance of their darkened estates. . . God kept me and thee alive. No suicide took our lives! That is something to give thanks for.

Blessings and peace to thee.

Thy humble Friend,

Timothy and wee family

This is one area I wish I never had to have ever gone through, but since it did happen, I see it working for some good area to make me stronger. Stronger in faith and hope in the Lord God and His Son Jesus Christ! Otherwise it is gruesome, hellish, and torturous! Unless ye have absolutely gone through it, ye don't know what it is like!!

Very glad and grateful to God that He allowed me to get off of that medicine that clouded my mind. I praise Him. I thank Him! He is worthy!! "Great God!! How Infinite art Thou! How poor and weak are we! Let the whole race of creatures bow, and pay their praise to Thee!"

I can't say a whole lot for suffering... but I can't see it existing without a purpose.

We hope to simply eliminate it, as though it lacked an intended purpose. And often, that leads to worse suffering...

Me, I'd vote for just making it go away. Great, when we can do that. But when it isn't that simple, what then?

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