From: Zach Schleien <email@example.com>
Date: 19 March 2018 at 04:00
Subject: I Started a Slack Group for Mental Illness
To: David Healy
Here’s a story I think would be perfect for David Healy:
When one of my closest friends took his own life after his battle with schizophrenia, I resolved to do something constructive for people living with mental illness.
I decided to start a free Slack community called 18percent, where those suffering from mental health issues could connect with and help each other.
The community’s name alludes to the 18 percent of Americans living with some kind of mental illness.
18 percent has grown rapidly: We are up to 100 users in five weeks, with over 9,000 messages sent. We’ve been making a life-saving impact already, but we’re not satisfied.
We want to reach more young adults and were wondering if you might be interested in learning more about our project, and possibly telling your readers about it.
Co-founder of 18percent.org
18percent is a community for anyone living with any mental health issue no matter how small or large. We understand the issue is widespread. In fact, 18% of Americans living with mental illness, which is why we created a community for folks to meet like-minded people. It can be hard to talk to someone who may not understand first-hand what you’re going through. 18percent is an online community based off Slack, so you can chat in real-time with 100’s of people from around the world. We didn’t mention that It’s free and always will be. We’ll also help put on in-person events around the United States and possibly internationally.
We started 18percent because our family friend Louis passed away after struggling for 3 years with schizoaffective disorder / bipolar type 1. The onset of Louis’ psychosis occurred when he was 19, first hospitalized in October 2014. From childhood through high school, Louis was happy, athletic, musically gifted, made friends easily, and achieved outstanding academic success. He was subsequently hospitalized three more times for durations of several weeks to months. In March of 2017, Louis once again rejected therapy due to medication side effects along with non-acceptance of his condition, making it nearly impossible to manage. Two months later, in the throes of psychosis, he did not understand the danger posed by the nearby river. It is presumed that he perished on June 4, 2017.
From: David Healy <firstname.lastname@example.org>
Date: 20 March 2018 at 07:34
A call ain’t going to be possible within the next month – between commitments here and then leave.
What would be good is some more input on where you guys are coming from – who exactly you are, what input or whatever will be offered to any of the groups listed on the website and a better sense of what its all about – the website looks slick, there is no obvious commercial angle – so are you being bankrolled by some wealthy donor or what?
Anything you feel happy to put in an email would be good
From: Zach Schleien <email@example.com>
Date: 27 March 2018 at 17:16
Subject: Re: Call
To: David Healy
Cc: David Markovich <firstname.lastname@example.org>
After my friends passing, I wanted to do everything possible to help people who are struggling with mental illness. On the side, I work in the healthcare technology industry and David, my partner, works in PR. We have bootstrapped this entire project.
There are a lot of support groups out there such as forums and apps that connect you to therapists like 7cups. 18percent offers real-time chat and connects you to our community. I attached an example of someone reaching out and how supportive our community can be. Our members keep on coming back because they want to either help people or ask for help, but I think it all comes down to a connection. People want to build real relationships with people who are willing to listen.
I’ve been posting in subreddits and reaching out to companies and journalists with the goal that they will write about 18percent. The more we can spread it, the more lives we can save.
Let me know if you have any questions and if you would be interested in writing about 18percent!
Zach has links to Johnson & Johnson!
He raised $9,500 for NAMI last year – make what you want of that.
Apparently there really was a young man named Louis Hjerpe, diagnosed schizoaffective, who disappeared into the woods and was found dead last year. Born & raised in Placerville CA, never moved away, never went to college. Zach was born & raised in the suburbs of New York and went to Syracuse (NY). We think its likely he was Zach’s best pal … iperidone.
One of the RxISK side lines is investigating shoddy clinical trial practices. Another is looking at how sophisticated pharma marketing is getting.
We Should Talk About Brintellix looks at the marketing of Brintellix, a rather shabby antidepressant that Lundbeck – or their marketers if there is a difference – are currently pushing in very sophisticated fashion. The website for this drug is all about user empowerment. We risk things like this doing an end-run around RxISK.
18percent looks like another great example of this. We have some amazing sleuths behind the scenes here – some of whom people know, others who they don’t. Some great sleuthing also gets done by people like Annie and so many others commenting on posts.
I’d like to throw this open to our extramural sleuths to find out more about Zach S and whether we are facing a wave of this kind of thing. We need to work out the shape and height of the wave to see if its surfable or whether this is one to duck under.
Copyright © Data Based Medicine Americas Ltd.
I can’t remember if it was 18% but another org was trying to piggy back off Duncan Double’s critical psychiatry blog – praising the work he was doing and the input by commentators – then inviting membership and support and sharing campaigning expertise – turned out down the line payments were expected. 18% might clarify it was them.
Of course Zach and 18percent are very welcome to comment. 18 percent looks v recent so if the DD material was a while back its likely to be someone else. I imagine there are a great many of these. I get several requests a month offering to write content for DH and for rxisk
Johnson & Johnson are also major players behind an organisation calling itself the European Health Parliament which operates in Brussels.
It must be made clear that European Health Parliament is only a pretend institution of the European Union and a front for industrial interests, though no doubt actual European Union institutions such as the European Medicines Agency (which is 87% funded by industry) are equally untrustworthy.
I wonder how many other graduate employment schemes of this kind J&J have started?
Often people wonder why I, and other reluctant patient activists who’ve been burned by corporate psychiatry, are so cynical about “Mental Health Awareness” campaigns. And why we don’t trust the National Alliance on Mental Illness (NAMI), even when they do nice things or lobby to save public services.
And why we roll our eyes when yet another bright shiny campaign kicks off to “challenge” the “stigma” around mental illness.
And why we’re suspicious of most new online support groups, or positive-encouragement apps–or apps that promise to monitor our smartphone use and social media postings to see when we might be edging towards “suicidal” or “hypomanic.”
This is why.
Zach’s crowdfunding campaign for “18percent”, just like his online fund drive for NAMI, was on a platform called CaringCrowd.com, which is “proudly sponsored by Johnson & Johnson.” (The division of J&J that makes Rx drugs is called Janssen, which allows Americans to keep associating the J&J name with hand lotion and baby powder.)
One goal is simply to generate some positive feelings for J&J (Janssen) by letting them play fairy godmother to heartwarming projects. The other goal? To scrape the data of any poor fool who pours his or her heart out on a site like 18percent, and incorporate what they learn into selling the next big antipsychotic drug.
Here’s the story of 18percent as celebrated on Goodcrowd.info, sponsored by CaringCrowd.com, sponsored by J&J.
Editor of Dating Hacks, Paleo Eats
Entrepreneur. Foodie. Traveler. Find me at: http://www.facebook.com/zschleien
3 December 2017 ·
I am so grateful to all of you who donated! We raised over $9,500, 100% of our goal for the National Alliance on Mental Illness NAMI in honor of Louis! The money will train 3 teachers and support 360 parents of children and teens with schizophrenia. Thank you, Johnson & Johnson and CaringCrowd for making this possible!
Hacking the Internship Process (The Work Book Series) Kindle Edition
by Bill Hobbs (Author), Zachary Schleien (Author)
‘a minor in Marketing’
Zachary Schleien is a recent graduate receiving a Master of Science in Information Management from the School of Information Studies at Syracuse University (Dec ’15). He received his B.A. in History and a minor in Marketing (’12).
He was a 2014-2015 Kauffman Entrepreneurship Engagement Fellow and has been invited by non-profits to talk on topics such as entrepreneurship and leadership. He currently works for Johnson & Johnson in their IT Leadership Development Program (ITLDP). He also runs an online food business with his mom called LIFT Protein Muffins, which offers a meal in a muffin. His passions lie in growth hacking, entrepreneurship, and nutrition.
Subreddits for Mental Illness
Feeling down or upset? I did some research and came up with every subreddit for mental illness.
Zach Schleien Retweeted
Charles Schleien @CharlesSchleien Mar 23
Keeping medication out increases the likelihood of a poisoning. Instead of keeping medication out as a reminder to take a dose, set an alarm in your phone so you can remember when to take or give a dose. #PoisonPreventionWeek!
Of course, one thing which is truly repulsive is these great corporations sponging off the good will of ordinary citizens.
Keeping it in the Family?
Dr Charles Schleien
2 Sons Zachery & Eric
Eric Schleien – Advisor – 18percent.org | LinkedIn
View Eric Schleien’s profile on LinkedIn, the world’s largest professional community. Eric has 5 jobs listed on their profile. See the complete profile on LinkedIn and discover Eric’s connections and jobs at similar companies.
There are further details on a Eric Schleien as State Rep…
I Googled the name Zach Schleien and noticed that someone of that name works at Johnson & Johnson. Here are the top two results…
Zach Schleien | Professional Profile – LinkedIn
View Zach Schleien’s full profile. … Zachary Schleien is a recent graduate receiving a Master of Science in Information Management from the School of Information Studies at Syracuse University (Dec ’15). … He currently works for Johnson & Johnson in their IT Leadership Development …
Zach Schleien (@ZachSchleien) | Twitter
The latest Tweets from Zach Schleien (@ZachSchleien). Eating healthy, learning, Business Technology Leader @JNJCares. New York, NY.
Marketing mix of Johnson and johnson – The 4 P’s of J&J
This globally acknowledged brand has targeted every segment of the society with age being no bar. It has products for babies, children, teenagers and even adults.
Popular cartoons like The Little Mermaid, Pocahontas and Winnie the Pooh and Pals have also been included in the ads for baby care products making them highly popular amongst the viewers.
“Today we reached closure on complex legal matters spanning almost a decade,” Johnson & Johnson general counsel Michael Ullmann said in a statement. “This resolution allows us to move forward and continue to focus on delivering innovative solutions that improve and enhance the health and well-being of patients around the world.”
Over 50, have you had your Shingrix .. Vaccination ..
re my comment above – thanks all you sleuthers – it was the european health parliament I was thinking of so it looks like they go fishing. So do we in a sense but the title of the the organisation is misleading and unethical. I did actually write to one of their MEPs ages ago after they put an unusual message on DD’s site – to ask for help with funding the Rxisk campaign – no answer of course! Then twigged what they were up to after reading more of their publicity. It is worrying though that they are targeting young people specifically now and cleverly through cttees consisting of but not headed by young people.
Seems a bit odd that someone with obvious links to pharma and NAMI would reach out to you, David? It’s a bit like a Villa fan reaching out to a Birmingham City fan who is the editor of an online magazine.
I am left wondering at what the possible motives are?
1. You have a popular blog so advertising via a guest post would be beneficial.
2. He has an opinion that is different to yours and wants to try and get his point across.
3. He hasn’t researched you and doesn’t know who you actually are.
4. J&J or NAMI told him to do it.
It seems bizarre that he would reach out then fall silent after you post about him. Most, if not all, would respond to set the record straight.
Do you, or anyone else who has left a comment here, have any idea what his possible motive is?
It’s a head scratcher for me.
I’m not sure there has to be a grand plan. I don’t think pharma worries about these things. Its a throw mud at the wall strategy. Some sticks. They don’t mind which bit of wall it sticks to
Bob & David,
It may also be poor “intelligence”. I remember a UNESCO pamphlet a few years ago, which I cannot track down now, which labelled certain websites “anti-vax” some of which were on their own side. Probably the approach would never have happened if Zach had simply done some homework.
Maybe he’s simply casting a wide net to ensure a successful launch. After watching the videos above I have the impression these efforts also have an end goal of impressing shareholders. The fact that Louis complained of adverse effects seems to be lost in all of the feel-good hoopla. It’s simply: Louis didn’t accept his diagnosis or adhere to taking medication, but with the help of this new community launched by a friend in his name, we hope you will. Impressive!
“One of my closest friends” or “our family friend?
Schizophrenia or bipolar I?
“Took his own life” or got lost hiking solo
Oceans Apart .. 100 percent ..
Delighted to share a newly completed website for film-maker Katinka Blackford Newman. https://www.katinkablackfordnewman.com
Katinka Blackford Newman is an award-winning film-maker, investigative journalist and best-selling author. She is inspired by extraordinary stories about ordinary people.
Phil Hickey @BigPhilHickey 4h
Auntie Psychiatry: anti psychiatry cartoon blog https://buff.ly/2J6KM84 Auntie on the recent UK antidepressant controversy
ANATOMY of a CONFIDENCE TRICK
.She is a giant anteater
Sure. Go Nuts. ..
Given Zach’s industry ties and his letter’s effort to conceal them, I ponder, “If Louis were alive today, would he applaud his friend’s connections to J & J?” The company was forced to pay 2.2 billion in criminal and civil fines for improperly promoting the antipsychotic drug Risperdal to older adults, children and people with developmental disabilities.
Would Louis support Zach’s fundraising for NAMI, a pharma front masquerading as a grassroots organization? NAMI targets families for donations that NAMI then uses to further the goals of the companies who made the products that in many cases contributed to the family member’s demise. It’s a sick but lucrative business model. The families NAMI fleeces seldom realize the wool was pulled over their eyes.
While Zach might have good intentions, he should be aware that delusion can be a symptom of schizoaffective disorder. Perhaps these links might prompt better contact with reality:
J & J Risperdal: https://www.nytimes.com/2013/11/05/business/johnson-johnson-to-settle-risperdal-improper-marketing-case.html
this is a terribly common story all over the Western world.
The one undoubtedly good thing about the new and gruelling film Unsane is that one of its villains is the ever-growing power of psychiatry and the pill industry that has taken it over.
Claire Foy plays an unhappy young woman who unwisely tells her woes to a counsellor and suddenly finds herself locked up in a mental institution, being dosed with pills which are clearly making her genuinely ill. On a much smaller scale, this is a terribly common story all over the Western world.
I do wish people were more alert to it.
This is Peter Hitchens’ Mail on Sunday column
25 March 2018 | by N-whymark
All filmed on an I phone. Saw this at a preview thinking it wouldn’t be very good but was surprised how good it was. Based on a women whose stalked and ends up in a psychiatric hospital. The stalker is creepy. Would recommend this to anyone who enjoys a thriller
Un sane ..
28 March at 22:57 ·
Out of the many people CaringCrowd (sponsored by Johnson & Johnson) could have chosen to be in this video, I was lucky enough to be one of them! CaringCrowd is a truly inspiring platform! #mycompany #EndStigma
Care about helping people? Join the Crowd!
Proudly sponsored by Johnson and Johnson
Thank you Annie! That is just frickin’ adorable. How nice to know that while Zach raised $9,500 for NAMI, Johnson & Johnson gave them $340,000 last year. (And that was kind of a slow year; they gave $540,000 to NAMI in 2016.)
Part of that was a dedicated $100,000 grant for “First Episode Psychosis.” This is where things get serious. People of Louis & Zach’s generation are very important to J&J just now. Here in the States (and worldwide) there is a very big focus on developing programs for young adults facing a first psychotic episode, with the stated goal of improving their long-term prospects. Some of these programs are pretty good — innovative, open to exploring the real-life stresses that may have triggered the episode, committed to using meds as sparingly as possible.
Others are just the opposite. J&J in particular is putting its money on depot antipsychotic injections that deliver a 1-3 month dose at a time. They are sponsoring studies where young folks like Louis are essentially given no way out of “medication adherence.” They are placed on depot injections of a fairly high dose of Invega (paliperidone) for two whole years. Many of these young people will NOT be in the first stages of a lifelong disease with a biological basis at all! And even for those who may be, this course of treatment will exact a high price.
THAT is the treatment approach NAMI will “educate” the parents of guys like Louis about. Your kid has a brain disorder that modern medicine understands, but he does not. Lifelong Medication Adherence is his only hope. Do what you gotta do to make that happen — and don’t forget our injectable products! Invega Sustenna (one month, $1667) and Invega Trinza (3 months, $7500).
Half a million a year to NAMI? For J&J, that’s a bargain.
I don’t quite get the reason for ’18 percent’. Zach’s intentions – presumably showing a genuine reaction to the loss of a friend – are, of course, plausible and could be set quite apart from the fact that he works for J&J. If so, then I would say that he’s rather naïve if he hasn’t thought through the fact that the followers here are going to mistrust that fact to some degree.
Quite apart from that, MIND already run a similar service with their ‘Ele Friends’ here in the UK. Couldn’t Zach have linked up with that if his intentions are purely for the benefit of MH? Ele Friends is a ‘chat community’, a very close, supportive group, with the overseeing eye of MIND ever present in crises needing intervention beyond that which can be provided by fellow sufferers alone. Sharing is obviously helpful in MH but it can become burdensome if you do not have an ‘expert eye from above’ who can provide that ‘extra’ in real need.
If their goal is genuinely to provide a ‘sounding board’ type of support then I would suggest that Zach and his friend David would do far better by getting in touch with MIND and linking in to a service that is already up and running……and would, possibly, make better use of any funds which they can raise!
There is a small (I assume) self help organisation called “Mind Our Minds” in UK, run by a lady called Jade Burrell, who herself suffers bi polar disorder, and seems at the moment to be running the blog and posts whilst in hospital herself and unwell. I always took this group on face value, did wonder about their funding but tbh haven’t really dug very deep as they seemed such a self-running group. I have posted references to our son’s experiences with ADRs, RoAccutane, on there from time to time. I read it daily and lots of people suffering mental unwellness do write their ideas and experiences there. Sometimes they can be fairly strongly put, mostly they highlight inadequacies of the MHRA system in UK, and they advise each other on ways of coping. Currently Jade Burrell has been asking everyone for ideas of what therapies or pastimes have helped individuals cope with their illnesses with a view to compiling and publishing their own small handbook on this. I have been reading them and they are interesting. Nowhere are medications really promoted, as far as I can see. I have often made reference to RxISK and they do share RxISK articles from time to time.
It would be brilliant if Annie could do some sleuthing on this organisation, who funds it etc. I do hope it’s nothing like the J&J set up.
On a similar tack…..a truly wonderful service now up and running for 6 successful years…..
‘Suicide Crisis’ is a self funded fantastically effective Cheltenham- based organisation, started in 2012 by Joy Hibbins, CEO, ably backed up by carefully selected trained therapists as volunteers and a team of like minded psychiatrists who can be consulted if needed. Joy will not take any corporate money, she runs purely on small donations from people like us. Although the NHS are impressed by her results and might like to take her under their umbrella in some counties, she remains independant but is only too happy to share her method of working with them in seminars, which is actually incredibly simple and logical. See her website ‘Suicide Crisis’ and read her various articles in the Papers to understand exactly how she works. In a nutshell, it’s all about kindness, compassion and confidentiality for the suicidal person. It’s also about trying to enable a suicidal person to see the same therapist always, so they don’t have to repeat their story endless times. It’s very much about saying ‘we care about you, we do not want you to end your life, tell us how you are feeling and what we can do to help you find life worth living again.’ So far they have had zero suicides since 2012.
Joy Hibbins has experienced derision from her own health authority about a person like herself, bi polar, thinking she can possibly start and run such a group, implying she’d be unstable. Her feeling appears to be, ‘people like me know what it feels like, we know what’s most helpful to us, so why not let us get on with it along with good, like-minded professional medical arms-length back up.’ Also, I myself would like to add that those of us who have friends who are bi polar know that often these people are also blessed with exceptionally insightful minds when they are well, great energy, and intelligence. They are the movers and shakers of this world, remember Churchill, where would we now be without him? But he was difficult to live with and work for at times.
You can see Joy presenting her ideas on suicide prevention to the Parliamentary Health Committee when the Government were putting together their Report to which many of us contributed, (I need Annie’s help to find the link) to hear her speak and see what a calm, caring and thoroughly reasonable person she is. Well worth listening to.
Finally – I am sick and tired of hearing the mantra “Oh, if you feel down/suicidal, don’t keep it to yourself, go and tell the NHS and there is help out there for you.” Frankly, there isn’t the listening compassionate sensible psychiatric help there now that there was in the 1950s,me hitch even then wasn’t ideal, often hit and miss, because there are too many of us, so many left worse than ever after ADRs, and the answer is to help each other. NHS, after the suicidal person has humbled themselves and poured out their heart, will stuff them with drugs or drown them in CBT and if they don’t get off their books pronto, they will brand them as attention seeking. So helping each other as far as possible is vital, to fill in the gaps. Obviously clever old Big Pharma can see the way the movement is going. Thanks DH with this latest post for alerting us to keep mindful of this and not to take everything at face value. Zach’s contacting you may have been a brilliant own goal!
Mind our Minds is listed, here, as one of the Groups in the SE described as National Survivor User Network.
Mind Our Minds
Vision: to make sure UK citizens are provided with mental health services that give everyone that uses them a good quality service when they need them. Aims: • To campaign for better mental health services. • To work with people who care about NHS mental health services to make NHS better. • To hold NHS to account. • To represent Mental Health Users views and make sure these are expressed as much as possible. • To use experiences of NHS to show where there are issues with services and ensure that these experiences are learnt from and acted upon.
NSUN organises meeting to promote a rights based approach to the mental Health Act
A meeting to be held on 12 April, to put together ideas for letters to the government and Professor Sir Simon Wessely and for a press release which advocate a human rights approach to current plans to reform the Mental Health Act.
In 2016 we were asked to give oral evidence about our Suicide Crisis Centre to the Parliamentary Select Committee which undertook an inquiry into the measures needed to prevent suicide. We were also asked by the Government’s adviser on suicide to give a presentation about our work to the national advisory group which he chairs.
We rely on small grants and public donations. We guarantee that public donations don’t go on staff salaries or advertising – the donated money goes directly towards services for people in suicidal crisis.
News and Media
Joy Gives Evidence At Select Committee In Parliament
Published on November 17, 2016
Joy was invited to give oral evidence to the Parliamentary Health Select Committee on the 8th November. They are undertaking an inquiry into the action needed to help prevent suicide. Joy was asked to speak to the Select
Committee about our Suicide Crisis Centre and how it works.
The video of the Select Committee session is below and Joy’s evidence starts at around 15.26
At 15.47, the mother of James describes how he died .. “our clients are surviving” says Joy.
The ‘Remit’ Spreads ..
Wendy Burn Retweeted
RC of Psychiatrists @rcpsych 6h
“Although the drugs are not a cure, they do slow down deterioration. Research shows that patients who have access to both drugs do better than those who only have one.” @wendyburn on potentially providing Alzheimer’s patients with an extra drug on the NHS.
Avicenna 4 days ago
Memantine, a glutamate receptor drug, is a drug looking for a disease to treat. It has failed at everything from migraine to pain, now having a tilt at dementia.
It has no effect at all in randomized trials and over blown claims about slowing brain shrinkage are a gross deception.
If NICE approves this placebo they really are out of touch.
Supported by the U.K. Medical Research Council and Alzheimer’s Society.
‘With respect to our third objective, determining whether the combination of donepezil and memantine treatment showed additive benefits, we did not find significant heterogeneity in the efficacy of donepezil or memantine in the presence or absence of the other drug. Subgroup analyses, however, failed to show significant benefits of adding memantine to donepezil treatment’.
Simon Wessely Retweeted
New York Times Books @nytimesbooks Apr 3
The field of psychiatry is, Lauren Slater writes, “still stuttering, with at best a slippery grasp on the science behind its pills and potions, a legion of medical men and woman who can help you in one way but hurt you in another.”
A Reckoning With an Imperfect Science in ‘Blue Dreams’
‘Blue dreams’ ..