White, 2021 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?

[Shep]

 

Therapeutic Advances in Psychopharmacology January 17, 2021; https://doi.org/10.1177/2045125320981174

 

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?

 

Edward White, John Read, and Sherry Julo

 

Full text at: Sage Journals

 

Please note this article is discussed over on the Mad in America site here - Facebook Groups Provide Psychiatric Drug Withdrawal Help When Doctors Don’t

 

Abstract

Background:

Antidepressant withdrawal is experienced by about half of people who try to reduce or come off their medication. It can be a debilitating, long lasting process. Many clinicians misdiagnose or minimise symptoms, inadvertently prolonging suffering. Most are unable to help patients safely taper off. There has been little research into the peer support communities that are playing an increasingly important role in helping people withdraw from psychiatric medications.

Methods:

To illustrate the growth and activities of Facebook withdrawal groups, we examined 13 such groups. All were raising awareness of, and supporting individuals tapering off, antidepressants and were followed for 13 months. A further three groups were added for the last 5 months of the study.

Results:

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.

Discussion:

The results are discussed in the context of research on the prevalence, duration and severity of antidepressant withdrawal. We question why so many patients seek help in peer-led Facebook groups, rather than relying on the clinicians that prescribed the medications. The withdrawal experiences of tens of thousands of people remain hidden in these groups where they receive support to taper when healthcare services should be responsible. Further research should focus on the methods of support and tapering protocols used in these groups to enable improved, more informed support by clinicians. Support from Governments and healthcare agencies is also needed, internationally, to address this issue.

 

 

Edited January 18, 2021 by Shep
added more bolding

[AlanC]

Some points from the paper in relation to my experiences here in the UK:

 

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Finally, in September 2020, the College published much improved and more accurate information on the subject and course of antidepressant withdrawal, which was greatly welcomed. It remains to be seen if this new advice will result in an increased awareness amongst practitioners of the issues people face when trying to stop these medications.

 

It certainly hadn't last time I spoke to one of my GP's.

 

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Fully informed consent is crucial and currently severely lacking, as most of the people who seek support from Facebook groups are questioning the diagnosis of their healthcare provider when withdrawal symptoms emerge.

 

GP’s really don’t like you questioning their judgement. And the new sections in the GMC's guidelines on Informed Consent and Shared Decision Making don't seem to have had the slightest effect. (see: https://www.gmc-uk.org/ethical-guidance/ethical-guidance-for-doctors/decision-making-and-consent/about-this-guidance )

 

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More importantly, clinicians do not recognise the symptoms of antidepressant withdrawal, often misdiagnosing it as relapse of previous symptoms. There is also evidence of huge denial of withdrawal severity and duration from clinicians.

 

This is exactly what happened to me.

 

I’m extremely tempted to post a recording of the appointment with my GP where I tried to explain that I believed I was suffering protracted withdrawal. I showed my doctor the Citalopram leaflet that explains the possibility, and her response was to literally shout me down: “No! It isn’t possible!”, to tell me that if she prescribed me more of the Citalopram so I could try to reinstate that “You’d just have the same problems coming off it again” before suggesting “I could prescribe you a different antidepressant” to deal with the fact that I had, in her opinion, relapsed.

 

She completely destroyed any confidence I had left in the medical profession.

 

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Lastly, the lay people who run these groups deserve a great deal of credit.

 

They most definitely do. They save people from the hell of Protracted Withdrawal Syndrome that I am currently suffering thanks to the fact that my GP’s are wilfully blind (in the legal sense: they could know, and should know, but choose not to know) about antidepressant withdrawal.

Sorry about the anger; it's the product of years of pain with no end in site and no hope of help. That said, I'm really glad this is, finally, being dragged out into the open so with time there will be less likelihood of it happening to anyone else.

[mva96]

@AlanC Hi again Alan.

 

No need to apologise for the anger, you've been through a terrible ordeal, it would be abnormal not to be.

 

With regards to the GP, i think doctors get very accustom to being 'the one in charge'. You as a patient (and in their eyes have no knowledge) come in, and they, the doctor tell you whats what. They have been told, and told others for years that SSRI withdrawal doesn't exist. Trying to convince them otherwise Is almost like trying to convince someone very religious that god isn't real.

 

I'm sure over time this will change, but for now it seems we are at the frustrating stage where the knowledge is emerging but not widely accepted. I'd imagine in 20 or so years, this will be a very different story.

 

There do seem to be some people who's doctors are at least open to the idea, perhaps try a different doctor/GP? I guess the second question though is what can they actually do about it?

 

As usual, hang in there.

[Caspur]

Thanks for posting this @Shep You beat me to it!

 

@AlanC Your experience is very, very common, and I had a similar one to you, although I'd been referred to psychiatric services where I would say it's even worse! Thanks for feedback. I am the author of the paper. I completely understand your anger and resentment. It's a travesty so many get treated this was and is pure ignorance on the part of the doctors! I am about to write a short article on the paper and others recently published to submit to the British Journal of General Practice.

 

If you haven't seen the latest from the Royal College of Psychiatrists it's here: https://www.rcpsych.ac.uk/mental-health/treatments-and-wellbeing/stopping-antidepressants

 

Its a good step forward!

 

[ChessieCat]

Youtube podcast:

 

 

[AlanC]

Prof. John Read gets quite brutal about misinformation from the drug companies - and how long it's taken RC Psych to react - around 34:51 in that podcast.

 

@Caspur: really good stuff, both in the paper and the podcast. It gives me hope.

[Nomansland]

Prof. John Read comments on PsychologyToday about this paper: https://www.psychologytoday.com/gb/blog/psychiatry-through-the-looking-glass/202101/online-antidepressant-withdrawal-support-groups

 

Dr. Ed White on Sputniknews talks about his own Venlafaxin withdrawal and makes additional comments about his paper: https://sputniknews.com/analysis/202101181081805968-thousands-rely-on-social-media-support-groups-after-coming-off-antidepressants-doctor-says--/