Thousands Rely on Social Media Support Groups After Coming Off Antidepressants, Doctor Says

© AP Photo / Matt RourkeIn this May 16, 2012, file photo, the Facebook logo is displayed on a mobile device in Philadelphia
In this May 16, 2012, file photo, the Facebook logo is displayed on a mobile device in Philadelphia - Sputnik International
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A new report has hit out at the lack of medical support available to individuals coming off anti-depressants in the UK. Researchers investigated the role of online support groups, often found on social media websites like Facebook, and the role they’ve played in assisting individuals and their withdrawals from these drugs.

The research follows similar findings, which revealed approximately 1 in 6 people in England were prescribed anti-depressants before the start of the COVID pandemic. Speaking about his own experiences with anti-depressants, we spoke to Dr Ed White, the lead author of this study.

Sputnik: Could you tell us a bit more about your research, and your own experiences coming off antidepressants?

Dr Ed White: I was taking an antidepressant for about six years, and then in 2017, I tried to come off it under the guidance of a doctor. I tapered off that antidepressant over a period of about four months, which I thought would be long enough to avoid me suffering any withdrawal symptoms, but it wasn't. When I finished that taper-off the drug, I ended up in a terrible state with horrific withdrawal symptoms, which lasted for quite a while; I was off work for five months, and I was very ill, I was incapacitated, and unable to function normally – I think is probably the best way of putting it. I was very lucky. I recovered from that episode by reinstating the drug under the guidance of a psychiatrist, [and] I since learned that for a lot of people who've gone through an extended period of withdrawal. Quite often that reinstatement process doesn't work, but I was very lucky, and I did recover and was able to go back to work, which was a major relief. After I recovered, I started to look around a lot online to see what other people's experiences were and I found there were literally thousands of people out there suffering in the same way. I started to look at the Facebook groups. I joined a couple, and one of them invited me to help administer the group supporting people tapering off the same drug I tried to taper off, called Venlafaxine. It's an American based group, which has got about 6,000 members in at the moment, just over. And then I started looking at all the other Facebook groups, and I collected a sample of those groups and started following them, and following their membership growth, and then I thought, okay, there's interesting information here, these groups are growing at an alarming rate. I took the data to Professor John Read at the University of East London and said, ‘Look, I've found this information here. I've got this data about these groups. It looks like there's a case here to highlight it’. So, I drafted a paper and John helped me to edit that paper into a format that's suitable for submission to a journal, and we submitted it, and it was published today.

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Sputnik: Before we look at what kind of support is being offered to individuals, what symptoms and complications may occur for individuals, and patients, withdrawing from these drugs?

Dr Ed White: Me personally, I suffered mood swings, panic attacks, horrific anxiety for no reason, horrific depression, I was suicidal, horrible anhedonia and anhedonia is a term that's used a lot in medicine that just describes a complete loss of interest in pleasure - that was really bad for me - gastrointestinal issues, weight loss... chronic fatigue is something that people often report. I mean there are literally huge lists of symptoms that people report trying to get off these drugs.

Sputnik: You talked about how a lot of support was in social media groups on the internet; what level of support is currently available to patients by their doctor, or other official channels/other health bodies, when coming off these drugs?

Dr Ed White: Very little. In fact, I'd say at the moment you'd be lucky to find a healthcare provider, a doctor or psychiatrist, who would acknowledge that there is a problem in terms of 'Okay, I’m suffering from withdrawal, I'm trying to stop an antidepressant, I'm suffering from withdrawal.' My experience was denial. I was told I was relapsing, which personally I found insulting because most of the symptoms are reported I'd never had before. There are no proper, regimented health care delivered services in the UK to help people. They're coming, there are people working on it, and that has been in response to the campaigning and to the change of stance from the Royal College of Psychiatrists. And also, there is a big project going on in the UK to rewrite NICE guidelines (the National Institute of Care Excellence), and they write all the guidelines for the delivery of medical care in the UK, and they are currently undertaking a project to look at providing completely new guidance for the use and withdrawal of antidepressants. But it's all in the future. None of it exists yet.

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Sputnik: How has the COVID pandemic and the lack of mental health support, which you detailed there, affected people in this situation when coming off antidepressants? Can we expect positive changes in the future?

Dr Ed White: I mean, the thing about the pandemic is it's causing a lot of anxiety for people, a lot of emotional distress - job loss, loss of earnings, not being able to put food on the table, not knowing what's coming in the future - always things that are natural reactions to a serious stressor. And I think a lot of people will go to their doctor and say, 'You know, I'm struggling', and they will be prescribed these drugs and, in the future, they will need help to withdraw from them. There's been quite a bit in the media recently about increases in antidepressant prescriptions last year, and I think for the want of a better term, it's storing up a problem. At some point, these people will need help to get off the drugs, and they will need proper help to do it. John Read, the guy who helped me write this paper, published a paper back in 2018 now which looked at the prevalence of withdrawal, and that paper concluded that 50% or more people are going to have some kind of withdrawal when they try to withdraw from an antidepressant, and of that 50%, half of those are going to suffer serious, severe symptoms. So, if you think about the fact that there are about 17 million adults in the UK that are currently taking these drugs, that's an awful lot of people that are going to need help if they want to withdraw.

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