The Brain Charity

In the wake of the COVID-19 pandemic, questions have been raised surrounding potential links between ‘long COVID‘ and functional neurological disorder (FND).

In this guest blog, FND Hope UK – part of the first and only global patient-led charity for people with FND – explain the most common neurological condition you’ve never heard of.

What is FND, and what are the symptoms?

FND is a problem with the functioning of the nervous system and how the brain and body send and receive signals.

It has multiple causes and can be triggered by physical injury, psychological or other trauma to the brain and or body.

Symptoms can include a variety of physical, sensory and cognitive issues that have yet to be explained by a recognised disease.

Is functional neurological disorder a disability?

FND patients live with life-changing symptoms, similar to Parkinson’s and long-term disability comparable to that caused by MS.

More than 70% of FND patients experience continuing or deteriorating symptoms after one year, and more than 70% are the same or worse after 10 years.

FND: not just a psychological disorder or only caused by trauma

FNDs are considered to be multifactorial, which means multiple risk factors can contribute to the development of the disorder. The most important point is that symptoms are real.

Historically FND has been viewed as an entirely psychological disorder which causes physical symptoms caused by suppressed trauma.

Psychological disorders and stressful life events, both recent and in childhood, may be risk factors for developing the condition in some patients, but they rarely provide a full explanation for the cause of the condition and are absent in many patients.

Patients do not have to be stressed, depressed or anxious to develop functional symptoms, nor have had adverse childhood experiences. Patients, physicians, and psychologists often fall into old paradigm traps searching relentlessly for underlying trauma that does not exist.

It can be essential to address the possibility of psychological contributing factors, however, this approach should not negate the possible need and effectiveness of other treatment options.

Why FND is the most common condition you’ve never heard of

Functional disorders, of which FND forms a part, account for up to 16% of diagnoses in new neurology outpatients, which is double the combined number for Parkinson’s (5%) and MS (3%).

This is why we say FND is the most common condition you have never heard of! It is estimated that between 50,000 and 100,000 adults and up to 20,000 children under the age of 16 live with FND in the UK. In addition, there are an estimated 10,000 new cases per year.

Stigma and misunderstanding around FND

The habitual change in terminology, traditionally rooted in psychiatry, has resulted in a great deal of confusion, stigma, and frustration surrounding FND.

A staggering 81.64% of patients felt they had been treated poorly due to stigma related to their FND diagnosis. While the individual labels have different meanings, they are all terms used for the same set of symptoms.

A common experience for those diagnosed with FND is the lack of information and understanding of the condition amongst the general population and within the medical community.

Diagnosis is often linked to patients experiencing stigma and misunderstanding from healthcare professionals and the general public. This includes suspicion of malingering or exaggeration of symptoms.

Diagnosing FND should be approached in the same transparent and straightforward way as any other condition. Diagnosis should be made from a detailed patient history and positive signs.

Any doctor (usually a neurologist) that makes the diagnosis of a functional symptom should be very familiar both with the possible neurological diagnoses that those symptoms could represent, and also with the positive clinical features of FND.

Functional neurological disorder and long COVID

In the wake of the COVID-19 pandemic, questions have been raised surrounding potential links between long COVID and FND. At present there is simply not enough understanding or research surrounding long COVID to comment with any authority.

In 2020, FND Hope UK facilitated a webinar to discuss COVID-19 and FND. Watch the webinar on their website.

About FND Hope UK

FND Hope’s mission is to promote awareness, support affected individuals, and advance research for the prevention, treatment and recovery of FND. Their vision is to have a world where FND patients can expect to be treated with dignity, care and respect, regardless of the cause of their symptoms.

They originated as a grassroots campaign and aim to uncover the hidden world of FND, empowering those affected to live their best possible lives.

For further information on FND and the support services provided by FND Hope UK, please visit the FND Hope UK website.

[Disclaimer: All material in this article is provided for informational purpose only. Content is not intended to replace or serve as medical advice or instruction. All health issues and concerns should be discussed with your treating medical care professional.]