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© 2021 The Authors. Journal compilation © 2021 Egalitarian Publishing Ltd
Journal of Critical Psychology, Counselling and Psychotherapy, Vol. 20, No. 4, 14-20
We joined forces as petitioners to our respective Governments’ Public Parliamentary
petitions, where we registered ongoing concerns about lack of recognition and support
for those struggling with prescribed drug dependence and withdrawal. The full record
of the Scottish Public Petition PE01651 (The Scottish Parliament, 2017a) from 2017 and
the Welsh Public Petition P-05-784 (Welsh Parliament, 2017) from 2017. A huge body of
patient experience evidence and evidence from other sources has been published for these
two UK petitions.
What became clear as knowledge progressed was the potential for misdiagnosis.
Marion Brown witnessed this first-hand with her therapy clients and Stevie Lewis
experienced it in her personal dealings with the UK National Health Service. Prescribers’
lack of recognition of withdrawal has led patients experiencing withdrawal symptoms to be
ABSTRACT: Prescribers’ lack of recognition of antidepressant withdrawal has led
patients experiencing withdrawal symptoms to be diagnosed as having Medically
Unexplained Symptoms (MUS) or Functional Neurological Disorders (FND).
KEY WORDS: SSRI, Drug Dependence, Misdiagnosis, Lived Experience
Marion Brown is a retired psychotherapist and researcher/campaigner/petitioner on behalf of patient self-help
peer group recovery and renewal: Scottish petition: Prescribed drug dependence and withdrawal. @recover2renew
mmarionbrown@gmail.com
Stevie Lewis is an expert patient and researcher/campaigner for recognition – and for support services. Petitioner
Welsh Petition: Prescribed drug dependence and withdrawal stevie.lewis2017@btinternet.com
Marion Brown and Stevie Lewis
The patient voice:
Antidepressant withdrawal,
medically unexplained
symptoms and functional
neurological disorders
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© 2021 The Authors. Journal compilation © 2021 Egalitarian Publishing Ltd.
Journal of Critical Psychology, Counselling and Psychotherapy, Vol. 20, No. 4, 14-20
diagnosed as having Medically Unexplained Symptoms (MUS) or Functional Neurological
Disorders (FND).
Today we know from the 2019 Public Health England review of the evidence
of ‘Dependence and withdrawal associated with some prescribed medicines’ (Taylor et
al., 2019) that a high proportion (around 1 in 4) of us are taking antidepressants and
other drugs, for example, neuroleptics, associated with dependence and withdrawal ‘as
prescribed’. Neuroleptics and mood stabilizers, which also can lead to physical dependence
and withdrawal symptoms (Cosci & Chouinard, 2020), have not been considered in this
review. But it is accepted at least that antidepressants, especially SSRIs and SNRIs, affect the
central nervous system, are dependence-forming and cause effects, adverse reactions and
withdrawal. It is vital that we gain an understanding and appreciation of the relationship
between these drugs and apparently unrelated, ‘unexplained’ and often misdiagnosed
‘symptoms’, yet we see little evidence of this being acknowledged, and certainly not
explored.
Back in June 2017, in her opening statement as Petitioner for the Scottish Petition,
Marion Brown encapsulated the experience of so many of her clients:
“I am here today to represent many people in Scotland who are not well enough to be here
in person. Some courageous individuals have provided clear evidence to the committee on the
terrible suffering that is being endured as a consequence of taking antidepressants and/or
benzodiazepines, as prescribed by their trusted doctors…
Clinical trials of medicines are usually carried out over relatively short periods. Patients
may be prescribed these medicines over very long periods, perhaps in combination with other
medicines. We have found that individual reported patient experience is frequently ignored,
put down and disbelieved by clinicians. The clear medical guidance is that benzos should be
prescribed for a very short time only, but that is not happening. There is substantial evidence
for prescribed benzo dependence and withdrawal issues going back decades. In contrast, medical
guidance for antidepressants is that they should be taken for at least six months, and then they
are commonly prescribed indenitely.
There are now many people who have been on antidepressants and/or benzos for twenty
years or a lot longer. Long-term harm is now clearly apparent. Safe tapering after different
periods of prescribed treatment is fraught with difculties for patients. The very few - mostly
online - support groups that exist have for years been informally gathering evidence on a
trial-and-error, ad hoc, patient-report and patient self-help basis. That genuine experiential
patient learning and sharing has been largely dismissed, disregarded and even denigrated by
the medical profession.
Now that there is a great deal of patient communication via online social media, as well
as extensive internet availability of research and medical information, patients often come to
know much more about their own conditions than their doctors possibly can. When patients try
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© 2021 The Authors. Journal compilation © 2021 Egalitarian Publishing Ltd.
Journal of Critical Psychology, Counselling and Psychotherapy, Vol. 20, No. 4, 14-20
to discuss what they have learned, doctors patronise them and say that they should not believe
anything that they nd on Facebook or the internet. Those patients nd themselves perceived by
their doctors as troublesome and difcult heart-sink patients, and acquire psychiatric diagnoses
such as personality disorders and medically unexplained somatic, functional or conversion
disorders.” (The Scottish Parliament, 2017b)
In her written testimony to the Welsh Petitions Committee (P-05-0784), Stevie
Lewis stated:
“There is a feeling and evidence from the lived experience of patients that, rather than educate
NHS employees about the serious effects that occur when starting, changing, or stopping drugs
which cause dependence, particularly antidepressants, NHS staff are being educated to look for
and diagnose Medically Unexplained Symptoms (MUS) or Bodily Distress Syndrome (BDS).
This is despite the fact that the patient in question is taking a drug that causes dependence.
This fact is ignored or overlooked.” (Welsh Parliament, 2017)
Surely, we should be considering the effects of prescribed drugs - especially
antidepressants (where physiological effects seem to have been largely overlooked) - that
are designed to cross the blood-brain-barrier and act on the central nervous system (CNS)
and to alter the functioning of the all-important autonomic fight/flight/freeze response?
The amygdala, a collection of cells near the base of the brain, exerts effects on all the bodily
systems (gastrointestinal, cardiovascular, endocrine, musculoskeletal, etc.) if necessary
readying for fight/flight/freeze, as well as focusing attention on threats and escaping from
any identified threats. In the case of antidepressant adverse reactions and withdrawal this
can result, via interoception (sense of the internal state of the body) of a person’s own
malfunctioning bodily systems, in an overwhelming instinct to escape from one’s own
body - and sometimes life-threatening akathisia.
The two public petitions provided an extraordinary resource: a multitude of
stories given as written evidence to the petitions committee members, who wanted a
better understanding of the problems that Marion Brown and Stevie Lewis were describing.
Their 2020 research paper “The ‘Patient Voice’: patients who experience antidepressant
withdrawal symptoms are often dismissed, or misdiagnosed with relapse, or a new medical
condition” (Guy et al., 2020), written together with Anne Guy and Mark Horowitz, draws
on this patient evidence. It was commissioned by the All Party Parliamentary Group for
Prescribed Drug Dependence and it tracks systemically 158 collated patient accounts of
the aetiology of the development of all manner of prescribed drug-related symptoms which
have been variously misdiagnosed as ‘relapse’, other illnesses, ‘unexplained symptoms’ or
‘functional’ disorders. The paper highlights eight ‘failure points’ where the system has led
to exacerbation of the problems, for patients and prescribers and concludes that:
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© 2021 The Authors. Journal compilation © 2021 Egalitarian Publishing Ltd.
Journal of Critical Psychology, Counselling and Psychotherapy, Vol. 20, No. 4, 14-20
“Several points for improvement emerge: the need for updating of guidelines to help prescribers
recognise antidepressant withdrawal symptoms and to improve informed consent processes;
greater availability of non-pharmacological options for managing distress; greater availability
of best practice for tapering medications such as antidepressants; and the vital importance of
patient feedback.” (Guy et al., 2020)
Their research included 158 people and showed that:
“In this sample, 25% of patients with antidepressant withdrawal presenting to their GP were
diagnosed with MUS, a ‘functional neurological disorder’ or ‘chronic fatigue syndrome.’ Many
of the signs and symptoms associated with these medically unexplained disorders, captured in
the often used PHQ-15 (Patient Health Questionnaire Somatic Symptom Severity Scale –
M.B. & S.L.), overlap with the symptoms of antidepressant withdrawal, including insomnia,
feeling tired, nausea, indigestion, racing heart, dizziness, headaches and back pain.” (ibid.)
Antidepressant research studies have for 3 decades used the DESS scale
(Discontinuation Emergent Signs and Symptoms Scale, undated)—which clearly lists the
physical somatic symptoms (also found in the PHQ-15 [Anonymous, undated]) in addition
to other ‘affect’ symptoms (included in the PHQ-9 Depression and GAD-7 General Anxiety
Disorder Patient Health Questionnaire (PHQ) Screeners (Pfizer, undated). This begs the
question why these known multiple antidepressant ‘discontinuation emergent’ physical/
bodily symptoms came to be incorporated into tools to encourage prescribers to consider
Medically Unexplained Syndromes (MUS) and overlook antidepressant withdrawal? The
Royal College of Psychiatrists estimate:
“About I in 4 people who see their GP have such symptoms (...). In a neurological outpatient
setting, it is 1 in 3 patients or more (…). Another common term is ‘functional’- the symptoms
are due to a problem in the way the body is functioning, even though the structure of the body
is normal.” (RCPsych, 2015)
There is much debate around the classification of ‘unexplained’ physical symptoms;
for example, Rosendal et al. (2017) say:
“Recent studies on BDS (Bodily Distress Syndrome - M.B. & S.L.) suggest that central
sensitisation not only results in multiple symptoms; it may also prompt several specic symptom
patterns described by arousal and/or exhaustion symptoms. These symptoms cluster in four
groups: 1) cardiopulmonary/autonomic arousal symptoms (palpitations/heart pounding,
precordial discomfort, breathlessness without exertion, hyperventilation, hot or cold sweats,
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© 2021 The Authors. Journal compilation © 2021 Egalitarian Publishing Ltd.
Journal of Critical Psychology, Counselling and Psychotherapy, Vol. 20, No. 4, 14-20
dry mouth), 2) gastrointestinal arousal symptoms (abdominal pains, frequent loose bowel
movements, feeling bloated/full of gas/distended, regurgitations, diarrhoea, nausea, burning
sensation in chest or epigastrium), 3) musculoskeletal tension symptoms (pains in arms or
legs, muscular aches or pains, pains in the joints, feelings of paresis or localized weakness,
backache, pain moving from one place to another, unpleasant numbness or tingling sensations),
and 4) general symptoms (concentration difculties, impairment of memory, excessive fatigue,
headache, dizziness).” (Rosendal et al., 2017)
As Stevie Lewis stated to the Welsh Petitions Committee in her correspondence
from November 27, this classification by Rosendal and colleagues “… provides the most
comprehensive list of my withdrawal symptoms that I have seen in one place.” The striking similarities
and relationship to CNS and autonomic arousal/exhaustion strongly suggest that these
‘medically unexplained/functional/somatic symptoms’ and ‘bodily distress’ etc., are
connected to the wide ranging serotonergic effects of antidepressants and how the body
tries to adapt (via all-important homeostasis) to any such changes.
Patients with “functional” symptoms make up a growing number of referrals to
neurology. It has been known for decades that antidepressants cause neurological problems
(for example, Foster & Lancaster, 1959; Haddad et al., 2001). One has to ask why does
patient experience tell us that neurologists are as blind to, or as dismissive as prescribers
of, the possibility that drugs that are designed to alter the functioning of the central
nervous system could be the very reason that the nervous system is now presenting as
malfunctioning. We were alarmed to see the British Medical Journal ‘Practice Pointer’
from October 2020 encouraging General Practitioners to ‘recognise and understand’
Functional Neurological Disorder (FND) (Stone et al., 2020), as well as the related article
in the Scientific American “Decoding a disorder at the interface of mind and brain” (Kwon,
2020).
We responded via Rapid Responses to the British Medical Journal’s “Recognising
and understanding functional neurological disorder” (Brown, 2020a, 2020b) as did Jill
Nickens (2020), co-founder of Akathisia Alliance for Education and Research. The
collective concern is that prescribers are being further guided to ‘misdiagnose’ and
overlook the vitally important emerging and developing signs of serious prescribed drug
effects (including sometimes life-threatening akathisia) - and that this can lead to avoidable
harm, chronic illness, disability and deaths. The following questions do not feature in the
list of questions suggested by Jon Stone and his colleagues (Stone et al. (2020):
• What is the person’s medication history - from the very first prescribed
medications, and then over the long term?
• When did the ‘unexplained’/‘functional’ symptoms first become apparent,
especially in relation to prescribed medications (i.e. the possibility of adverse
medication effects or withdrawal)?
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© 2021 The Authors. Journal compilation © 2021 Egalitarian Publishing Ltd.
Journal of Critical Psychology, Counselling and Psychotherapy, Vol. 20, No. 4, 14-20
Via the written evidence to the public petitions and through online social media
platforms, many examples can be found of patients who were prescribed drugs which can
cause dependence and withdrawal (particularly SSRI and SNRI antidepressants) whose
lives have been devastated by neurological malfunctions, especially relating to movement.
Stevie Lewis’ own experience of a movement disorder, together with those of other
people, is described by her in an article for Rxisk, an independent drug safety website to
help weigh the benefits of any medication against its potential dangers (Lewis, 2020) and
in a follow-up article by David Healy (2020).
The impact of prescribed drug withdrawal being swept under the carpet for the
past 20 years has had profound consequences for both the UK National Health Service
(NHS) and individual patients. For the NHS, the cost of misdiagnosis and over-prescribing
must be huge - not to mention the costs of treating illnesses that arise as adverse effects
of psychotropic drugs. This is the case for health care systems in other countries, too.
Work is underway to establish those figures. For individuals, they have had to live with the
ramifications of being told that they are more ill than they thought they were. They are
told they have ‘relapsed’, they have Medically Unexplained Symptoms (MUS), Functional
Neurological Disorders (FND), Bodily Distress Syndrome (BDS), chronic fatigue, irritable
bowel, and a range of other diagnoses. When in reality a simple reinstatement of the drug
and a long slow taper could result for many in the well-being they were originally seeking
when they visited the doctor in the first place.
References
1. Anonymous (undated). Patient Health Questionnaire Somatic Symptom Severity Scale (PHQ-15).
Available at https://www.psychtools.info/phq15/ [Accessed 24 Feb 2021]
2. Brown, M. (2020a). Rapid Response: Re: Functional neurological disorder – Patients’ experience &
research. British Medical Journal, 371. Available at https://www.bmj.com/content/371/bmj.m3745/
rr [Accessed January 24, 2021]
3. Brown, M. (2020b). Rapid Response: Re: Functional neurological disorder – Patients’ experience
& research: Update Nov2020. British Medical Journal, 371. Available at https://www.bmj.com/
content/371/bmj.m3745/rr-3 [Accessed January 24, 2021]
4. Chouinard, G. & Chouinard, V. (2015). New classification of selective serotonin reuptake inhibitor
withdrawal. Psychotherapy and Psychosomatics 84:63-71; available at https://www.karger.com/Article/
Fulltext/371865 [retrieved January 24, 2021]
5. Cosci, F. & Chouinard, G. (2020). Acute and persistent withdrawal syndromes following discontinuation
of psychotropic medications. Psychotherapy and Psychosomatics 89:283-306; available at https://www.
karger.com/Article/Pdf/506868 [retrieved January 24, 2021]
6. Discontinuation Emergent Signs and Symptoms Scale (DESS) Scale (undated). Available at https://
hulpgids.nl/assets/files/pdf/DESS.pdf [retrieved January 24, 2021]
7. Foster, A. R. & Lancaster, N. P. (1959). Disturbance of motor function during treatment with
imipramine. British Medical Journal (5164):1452-1453; available at https://www.ncbi.nlm.nih.gov/
pmc/articles/PMC1991091/ [retrieved January 24, 2021]
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© 2021 The Authors. Journal compilation © 2021 Egalitarian Publishing Ltd.
Journal of Critical Psychology, Counselling and Psychotherapy, Vol. 20, No. 4, 14-20
8. Guy, A., Brown, M., Lewis S., et al. (2020). The ‘patient voice’: Patients who experience antidepressant
withdrawal symptoms are often dismissed, or misdiagnosed with relapse, or a new medical condition.
Therapeutic Advances in Psychopharmacology 10. Available at https://www.ncbi.nlm.nih.gov/pmc/
articles/PMC7659022/ [retrieved January 24, 2021]
9. Haddad, P. M., Devarajan, S., & Dursun, S. M. (2001). Antidepressant withdrawal presenting as
‘stroke’. Journal of Psychopharmacology 15:139-141.
10. Healy, D. (2020). Functional neurological disorder? Available at https://rxisk.org/functional-
neurological-disorder/ [retrieved January 24, 2021]
11. Kwon, D. (2020). Decoding a disorder at the interface of mind and brain. Scientic American 323(5):58-
65. Available at https://www.scientificamerican.com/article/decoding-a-disorder-at-the-interface-
of-mind-and-brain/ [retrieved January 24, 2021]
12. Lewis, S. (2017). P-05-784 Prescription drug dependence and withdrawal - recognition and support:
correspondence from the petitioner to the committee, 27.11.17. Available at https://business.senedd.wales/
documents/s69209/27.11.2017%20Correspondence%20from%20the%20Petitioner%20to%20
the%20Committee.pdf [retrieved January 24, 2021]
13. Lewis, S. (2020). My doctor thinks I am faking it; SSRI movement disorders. Available at https://rxisk.org/
my-doctor-thinks-im-faking-it-ssri-movement-disorders/ [retrieved January 24, 2021]
14. Nickens, J. (2020). Rapid response: A functional neurological misdiagnosis, akathisia, and suicide. British
Medical Journal 371. Available at https://www.bmj.com/content/371/bmj.m3745/rr-0 [retrieved
January 24, 2021]
15. Pfizer (undated). Welcome to patient health questionnaire (PHQ) screeners. Available at https://www.
phqscreeners.com/ [retrieved January 24, 2021]
16. Rosendal, M., Olde Hartman, T., Aamland, A., et al. (2017). “Medically unexplained” symptoms and
symptom disorders in primary care: Prognosis-based recognition and classification. BMC Family Practice
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0592-6 (retrieved January 24, 2021)
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January 24, 2021]
18. The Scottish Parliament (2017[a]). Parliamentary business, ofcial Report: Prescribed Drug Dependence
and Withdrawal (PE1651). Available at https://www.parliament.scot/parliamentarybusiness/report.
aspx?r=11051&i=100920 [retrieved January 24, 2021]
19. The Scottish Parliament (2017[b]). Getting involved. PE01651: Prescribed drug dependence and
withdrawal. Available at http://www.parliament.scot/GettingInvolved/Petitions/PE01651 [retrieved
January 24, 2021]
20. Stone, J., Burton, C,, & Carson, A. (2020). Recognising and explaining functional neurological disorder.
British Medical Journal 371:m3745; available at https://doi.org/10.1136/bmj.m3745
21. Taylor, S., Annand, F., Burkinshaw, P., et al. (2019). Dependence and withdrawal associated with some
prescribed medicines: An evidence review. London: Public Health England. Available at https://assets.
publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/940255/
PHE_PMR_report_Dec2020.pdf [retrieved January 24, 2021]
22. Welsh Parliament (2017). Senedd business: P-05-784 Prescription drug dependence and withdrawal
- recognition and support. Available at https://business.senedd.wales/mgIssueHistoryHome.
aspx?IId=19952 [retrieved January 24, 2021]
