For many years, research into fibromyalgia — including its causes, symptoms, treatments, and long‑term impact on daily life was limited. This made it difficult for people living with fibromyalgia, as well as clinicians and carers, to access reliable information and evidence‑based guidance.
Today, this is changing. A growing number of studies are helping to improve understanding of the condition, how it develops, and how it can be better managed through treatment, lifestyle approaches, and support networks.
Our Role in Fibromyalgia Research
Fibromyalgia Friends Together is committed to contributing to this growing evidence base. We have carried out our own research in partnership with respected organisations, including Healthwatch and Loughborough University . These collaborations help us highlight the real experiences of people living with fibromyalgia and ensure their voices are represented in local and national conversations.
Research Featured on This Page
On this page, you will find:
- Research currently underway
- Research projects we have directly partnered on
- Studies we have contributed to
- Additional fibromyalgia research we believe may be helpful to our community
We aim to make high‑quality information easier to access for anyone seeking to understand fibromyalgia more deeply.
Past research
Research Partnership 2017
Fibromyalgia Friends Together partnered on our first-ever research project in 2017 to help document the lived experience of people with fibromyalgia and to highlight gaps in local health and care services. This pioneering collaboration gave our community a clear, evidence‑based voice in conversations about diagnosis, treatment, and support.
About the Study
The project was a large patient‑experience survey led by Healthwatch Leicestershire that gathered responses from 950 people, including 247 respondents from Leicestershire. The survey captured how fibromyalgia affects everyday life and how people experience primary and secondary care services.
Key Findings
- Severe impact on quality of life — respondents reported that fibromyalgia limits education, employment, social life, and overall wellbeing.
- Daily living is affected — many people said fibromyalgia reduces their ability to carry out routine chores and personal care such as eating, bathing, and dressing.
- Delayed diagnosis increases isolation — long waits for a diagnosis contributed to frustration and social isolation for many respondents.
- Mixed experiences with GPs — while some people had positive primary care interactions, over a quarter reported that their GP was neither knowledgeable nor supportive about fibromyalgia.
- Lack of NHS information and local support — more than half of respondents said they were not offered NHS information on living with fibromyalgia, highlighting a clear gap in patient education and signposting.
What This Meant for Fibromyalgia Friends Together
This 2017 study shaped our early priorities. The evidence showed a pressing need for:
- Better information and resources for people newly diagnosed with fibromyalgia.
- Improved training and awareness among primary and secondary care staff so symptoms are recognised and taken seriously.
- Accessible local services such as specialist clinics, support groups, and practical guidance on exercise and nutrition.
Why This Research Still Matters
Although the study was carried out in 2017, its findings remain relevant: they document persistent barriers to diagnosis, inconsistent clinical understanding, and a strong demand from patients for clear information and local support. We continue to use these insights to guide our advocacy, awareness work, and the services we develop for people living with fibromyalgia.
Read the Full Report
For the full Healthwatch Leicestershire report and detailed findings, see the original publication (Healthwatch Leicestershire, July 2017).
Call to Action If this research resonates with you, please join our support groups, share your experience, or get involved to help shape future studies and local services. Suggested internal links: About Us, Support Groups, Symptoms of Fibromyalgia, Treatments & Management, Get Involved, Contact Us.
