Medical Uncertainty: ME/Cfs, Fibromyalgia, Long Covid, Chemobrain

Between 13 April and 22 May 2026, this profile is being used to conduct observational research on Facebook. We are observing public groups/pages with more than 500 followers and the Facebook Feed. No data will be downloaded, and no personal identifiable data, direct quotes or images will be recorded. If you have any questions or concerns about this research, please get in contact on Facebook or by email: [email protected]

As we approach the publication of the delivery plan for ME/CFS in June, patient activists highlight that improvements to care are unlikely to happen without additional funding.

Sister of ME sufferer from Devon urges more government funding Rosie Barrett, who cares for her sister Alice, says a plan to overhaul care needs financial backing.

"New research has revealed the number of NHS clinics for people living with Long Covid has more than halved, from a peak of 120 services in 2022 to 46 today."

Number of NHS Long Covid clinics halved, Birmingham charity finds The BBC also finds the NHS in England no longer monitors the status of Long Covid clinics.

"When was the last time you heard a politician utter the words “long Covid”? Or saw calls for research or support for sufferers make the front pages? In 2025, long Covid is the public health crisis no one wants to talk about"

Long Covid is the pandemic’s dark shadow. Why does no one in power in Britain want to talk about it? | Frances Ryan Five years after the first lockdown, millions of lives are still being ruined by this debilitating disease. You wouldn’t know it, says Guardian columnist Frances Ryan

"One of the main challenges in diagnosing and treating long Covid is its unpredictability: research studies have linked it to more than 200 symptoms affecting every part of the body."

‘We’re losing decades of our life to this illness’: long Covid patients on the fear of being forgotten Five years on from March 2020, millions of people still face debilitating symptoms, with huge repercussions on public health and productivity. But politicians are starting to pretend the pandemic never happened

Cinzia Greco is the principal investigator on the Medical Uncertainty project. She is a first-generation migrant academic, and works across several countries, languages, and disciplines. She has a longstanding interest in how medical systems shape the experiences of patients and professionals. Her previous research has focused on breast cancer, and she is particularly interested in the relationship between gender and medicine.

https://research.manchester.ac.uk/en/persons/cinzia.greco

Sally Cross is working as a Research Assistant on the Medical Uncertainty project, and completing a PhD focused on fibromyalgia and ME/CFS. She has previously worked for non-profit organisations, working on initiatives to reduce health inequalities. Her earlier research focused on experiences of irritable bowel syndrome, and she is interested in conditions which blur the boundaries between mental and physical health categories.

https://research.manchester.ac.uk/en/persons/sally-cross

We are exploring experiences of medical uncertainty in relation to fibromyalgia, myalgic encephalomyelitis (ME)/chronic fatigue syndrome, long COVID and chemo-brain. We are working with patients, doctors and researchers to transform medical perceptions of these conditions.
The Medical Uncertainty project is hosted at Centre for History of Science, Technology and Medicine, University of Manchester and funded by the Wellcome Trust.

We are conducting a new research project to understand how medical uncertainties affect people living with ME/CFS, fibromyalgia, Long Covid, and chemobrain.

Our focus is on exploring the uncertainties about the causes, diagnosis, and treatment of these conditions, as well as how they affect people's futures. We want to learn how these uncertainties impact patients' interactions with the medical system, their work situations, access to benefits, and relationships with friends and family.

We are looking to speak to people with a formal or self-diagnosis of ME/CFS, fibromyalgia, Long Covid and chemobrain.

We are also studying how medical professionals and researchers deal with uncertainty when working on these conditions.
Our goal is to improve understanding of these conditions and the experiences of those living with them and promote greater awareness among medical students and medical professionals.