This week on the MIA podcast, we discuss a recent paper that considers the support provided by online support groups when people seek help for psychiatric drug withdrawal. The paper is entitled ‘The role of Facebook groups in the management and raising of awareness of antidepressant withdrawal: is social media filling the void left by health services?’ It was published in the journal Therapeutic Advances in Psychopharmacology in January 2021 and the authors are Sherry Julo, Ed White and John Read.
“In June 2020, the groups had a total membership of 67,125, of which, 60,261 were in private groups. The increase in membership for the 13 groups over the study period was 28.4%. One group was examined in greater detail. Group membership was 82.5% female, as were 80% of the Administrators and Moderators, all of whom are lay volunteers. Membership was international but dominated (51.2%) by the United States (US). The most common reason for seeking out this group was failed clinician-led tapers.”
We discuss:
- Sherry Julo’s experiences of difficult withdrawal from Effexor (venlafaxine) and Prozac (fluoxetine) which prompted her to set up a Facebook-based support group in 2013.
- That after her doctor attempted a rapid taper, she experienced hallucinations, shivering, sweating, body jerking and feeling like she had bugs crawling under her skin.
- How she was sent by her doctor to the emergency room and it was the ER physician who explained that Sherry was experiencing psychiatric drug withdrawal.
- That Sherry felt great relief when finding that she was not alone and she experienced empathy and understanding from online support that was absent in her interactions with doctors.
- How Sherry’s group is now eight years old, has over 6,500 members and is run by a team of admins.
- That Sherry now recommends that people do their research when a doctor recommends something.
- How we should pay tribute to all the volunteers who act as admins and moderators and directly support people joining support groups.
- Ed White describes how, as a member and admin of a support group, he decided that there would be value in analyzing the support group membership and how he approach John Read for help in getting the data published.
- That the paper shows the large number of people seeking support (the groups analyzed in the paper had a total of over 67,000 members) and that the membership is growing steadily.
- How Ed describes his own initial doctor-led attempt to come off his antidepressant in 2017 as the most gruelling, frightening and lonely experience of his life.
- That the paper identifies that the most common reason for people joining support groups was because of a previously failed doctor or psychiatrist-led taper.
- That there is an assumption that advice from the internet is not reliable, but in this case, the groups are providing a valuable service that is almost totally absent in official circles.
- That the online support groups can often provide an ‘always on’ service, so it is partly about the advice and support given but also that the groups can act in a way that official support could never match.
- How the groups can serve as a rich source of learning and data which is particularly important because the impact of withdrawal can be so wide-ranging, including but not limited to physical, psychological and sexual problems.
- That there will be follow up work to try and understand what kind of support and advice is given in online groups and how members make use of the support provided.
- How John Read recently surveyed UK General Practitioners, two-thirds of which admitted that they needed training because they were not confident in being able to tell the difference between relapse and withdrawal problems.
- That given the inexorable rise in psychiatric drug prescribing, it is difficult to see how we could manage without the support, advice and understanding given by online support groups.
- That the rise of polypharmacy is causing additional issues and complexities and how little we know about the right way to come off multiple drugs.
- John Read’s work to capture and present the experiences and views of people who interact with the mental health system to support change based upon real-world experience.
Links and further information
Facebook Groups Provide Psychiatric Drug Withdrawal Help When Doctors Don’t
Out of the Abyss (with a Little Help from My Friends)
Antidepressant Withdrawal: Avoid Doctors?
Tens of Thousands Relying on Social Media Support Groups to Withdraw From Antidepressants (video)
Thank you James for giving me the opportunity to speak out about my journey, how it came about me starting the Effexor support group (EFFEXOR (Venlafaxine) Tapering, Discontinuation Syndrome and Protracted W/D) and what mine and many other groups are doing offering support and helping people taper off these drugs safely. I was shocked how rapidly my group grew. So many needing help and support they weren’t getting from their doctors.
Doctors put me in a desperate situation with no help or support. I had nowhere to turn and that’s when I decided to try and start a Facebook support group. It was a huge relief knowing I wasn’t alone when others started joining, expressing that they were experiencing the same thing. After a lot of research I found that it is possible to taper off slowly and safely. Our group offers not only support but information and tips we suggest to help eliminate or minimize any withdrawal symptoms they might have. These groups are lifelines to many people and glad we have the platform to help others.
Thank you again James!
Sherry Julo
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Thank you Sherry! Ann Kelly sends her regards (from early days!) I see her now & again – she is OK buit has developed severe sensitivity to EMF – so not currently able to engage via FB etc..
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This is fabulous James and the hard workers on the front lines, are angels.
Thanks SO very much for your ongoing effort to get the word out.
Now if we could only find a way to stop the drugging of kids.
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As one of the millions of people who had the common symptoms of antidepressant discontinuation syndrome misdiagnosed as “bipolar,” way back in 2001, resulting in an anticholinergic toxidrome induced living hell of drug cocktails. Since the psychiatrists’ recommended treatments for “bipolar,” very literally, are a recipe for how to make people “psychotic,” via anticholinergic toxidrome.
https://en.wikipedia.org/wiki/Toxidrome
I’m very grateful to all of you for exposing this problem, of the doctors claiming to be ignorant of the adverse and withdrawal effects of the antidepressants, and other psych drugs. Despite the fact, all doctors – including the psychiatrists – were taught all about anticholinergic toxidrome in med school.
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Excellent article.
I am very glad the support groups exist and congratulate them for developing there skilled work and for John Reeds excellent assessment of the situation.
The situation is however likely to continue until direct action campaigns from survivors emerge.
Out of the support groups, onto the streets.
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