​Kickstarting research

We are developing a programme of research focused on conditions, patient groups, and clinical approaches that have historically been overlooked, misunderstood, or poorly managed.

By bringing together perspectives from medicine, psychology, ethics, and lived experience, we aim to generate insights that can inform care across a wider range of conditions — not just a single diagnosis.

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Causes of Persistent Physical Symptoms

Some people experience ongoing physical symptoms that do not fit neatly into a single medical diagnosis. These symptoms may begin after:

• An infection

• An injury

• A recognised medical condition

• A stressful or traumatic life event

• Or may appear without a clear trigger

Over time, clear medical explanations can become harder to identify. Research suggests that symptoms may be influenced by a combination of factors, including:

• Ongoing inflammation or immune system changes

• Microbiome disruption (changes in gut bacteria)

• Epigenetic influences (how life experiences affect gene expression)

• Mental health factors such as anxiety or depression

• Behavioural responses, such as activity avoidance driven by symptoms

• Early life stress or trauma

• Learned expectations about illness and recovery

These factors often overlap and interact, which is why many patients benefit from a holistic, whole-person approach rather than a single-specialty solution.​

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​Our Plan of Action:

We are launching a multi-pronged investigation to better understand these experiences and identify meaningful ways forward.

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1️⃣ Knowledge Gathering

We will:

• Review existing research and clinical literature

• Map available online resources and support networks

• Speak directly with patients and families to understand lived experience

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2️⃣ Key Focus Areas

Our work will explore:

• Underlying biology and current diagnostic criteria

• Common symptom patterns and how conditions progress over time

• Existing management approaches and their limitations

• Gaps in services and systemic barriers to care

• Frequently co-existing conditions (for example, the RCCX theory, which explores links between connective tissue, immune, and neurological features)

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3️⃣ Collaboration

We aim to work closely with:

• Specialist clinical centres, such as the EDS Centre at University College London Hospital (UCLH)

• Patient advocacy organisations, including the Ehlers-Danlos Society

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4️⃣ Patient-Led Survey

We plan to conduct a survey designed with patients, focusing on what matters most to those living with Ehlers-Danlos syndromes (EDS) and Hypermobility Spectrum Disorders (HSD).

Topics will include:

• Workplace experiences and disability discrimination

• Delays in diagnosis during childhood and impacts on education

• The relationship between health, employment, and finances

• Groups of symptoms that commonly occur together (for example bladder, gastrointestinal, or seizure-related symptoms)

• Environmental triggers and conditions such as mast cell activation syndrome (MCAS), which can affect allergic and inflammatory responses​

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Next Steps

• Identify and apply for funding opportunities

• Engage key collaborators and thought leaders

• Build partnerships to support future research, education, and advocacy

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Personal Story

“Last week, I was contacted by two of my former EDS patients who have no specialised support in the city of Sheffield or its neighbours. Both were managing their problems very well but were uncertain about new symptoms. As a retiree, I am no longer able to advise them, but pointed them to services for other conditions. I mentioned this group and they both were aware of many other individuals without medical support for a variety of EDS symptoms. The most worrying and inexplicable stories include antipathy and occasional hostility from some GPs and gastroenterologists. I hope this is a local problem, but I doubt it.”