The Essential Tremor Priority Setting Partnership (PSP) coordinated by the James Lind Alliance (JLA), has invited people living with essential tremor (ET), their families, carers, and healthcare professionals to share the questions about ET that matter most to them

We have now gathered a long list of uncertainties about diagnosis, treatment, and day-to-day living with ET. We are now undertaking further consultation with this community to select the ’top ten’ priorities, which should be the focus of future research.

In constructing the ‘long list’, we received hundreds of questions which don’t fall under the umbrella of ‘research’, but which highlight broader issues around terminology, awareness, policy, and support that are vital to improving life with ET.

We wanted to share these questions, since they were clearly of high importance to the community, and signpost to some potential answers.

Can Essential Tremor be cured?

This question was one of the most frequently raised, revealing the community’s deep desire for hope and progress. This question didn’t make the ‘long list’ becasue the JLA approach focuses on areas where research can realistically change lives in the near term, such as improving diagnosis, treatment, or quality of life. Of course, a cure is the most desirable outcome, and scientists worldwide will continue to develop the  scientific knowledge needed to make this progress.

How do you explain essential tremor simply to others?

Many people with ET find it hard to explain their condition, especially when they feel judged or embarrassed when with new people. We asked members of the steering group who live with ET to share how they explain ET. Here are a few examples:

“I have a fine external tremor mainly in my fingers, throat, and jaws that causes me great difficulty in fine movement and balance.”

“This is a neurological condition that affects the use of my hands. When my hands are at rest there is no problem but when I tried to use them they suddenly started to shake and I could not control them easily.”

The NTF describes essential tremor as “...a rhythmic trembling of the hands, head, legs, trunk and/or voice.”

Having a clear, simple way to explain ET can help reduce awkwardness, misunderstandings, and stigma. Many people find it helpful to create their own short explanation that feels comfortable and true to their experience.

For employers, it can help to explain that essential tremor can affect practical tasks such as writing, using a computer, eating, or speaking, and that small adjustments at work can make a big difference.

Why is it called “Essential” Tremor, and can the name be changed?

Many respondents told us that the word “essential” can be confusing or misleading, sometimes making it sound like the tremor is “necessary” or “not serious”. This question points to a broader issue about language, understanding, and stigma. Naming matters, both in how people with essential tremor perceive their condition and how society responds to it.

However, changing the name of a medical condition such as essential tremor is not straightforward. Once a name is established in clinical practice, research, and international classification systems, it becomes deeply embedded and used worldwide. Global consistency is important so that clinicians, researchers, and people living with the condition share a common language.

While the concern over the name “essential tremor” is valid, it remains a topic for wider conversation, awareness, and advocacy, but the global community would need to work together to avoid any negative consequences if the naming was to be changed.

How can we increase funding for ET research and share updates more widely?

Another strong theme was the desire to see more investment in ET research and better communication about ongoing studies. Respondents expressed frustration that ET can feel “underfunded and overlooked” compared to other neurological conditions, despite being far more common.

ET is estimated to affect up to 4–5% of people over 40, making it the most common movement disorder. Indeed, we hope the output from our Priority Setting Partnership will be published in the world’s leading neurology journals, which will encourage collaboration between charities, funders, researchers, and people living with ET to make the condition more visible and to attract new support.  

How can we ensure that ET is recognised as a disability in the UK?

Many people shared experiences of struggling to access benefits, workplace adjustments, or general recognition of ET as a disabling condition.

Under the Equality Act 2010, a person is considered disabled if they have a “physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities”. This means that ET can be recognised as a disability if its impact meets these criteria. For more information please read the gov.uk website on the Definition of disability under the Equality Act 2010.

Awareness of this among employers and service providers remains limited. Continued advocacy and education are needed to ensure that people with ET receive the adjustments and support they are entitled to.

What support is available for children with Essential Tremor?

Parents and families also raised concerns about support for children living with ET -including diagnosis, school adjustments, and emotional wellbeing. While the current PSP focused on adults, this question highlights that ET can begin early and that families need better information, resources, and peer connections.

Looking Ahead

Even though these questions fell outside the formal remit of the PSP, they give valuable insight into the broader needs of the ET community. The National Tremor Foundation will continue to highlight these topics and work with partners to address them through awareness, advocacy, and collaboration.

The outcome of the PSP will be a Top 10 list of research priorities for essential tremor, decided via survey by people living with ET, carers, and healthcare professionals. The survey is open until the end of January - please take part and share it with anyone who may be interested (click here to take part). These priorities will help guide future research and funding decisions.

If you’d like to follow the progress of the Essential Tremor PSP, please visit the Manchester Metropolitan project webpage and the JLA website.

By Dr Sarah Martin

Research Fellow at Manchester Metropolitan University

On behalf of the ET PSP Steering Group.

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