| NB: When considering information concerning groups of people with ME/CFS and those with long COVID, it is important to remember that ME/CFS is a symptom-based clinical diagnosis not a mechanistic one. It is clear there is a high degree of shared pathophysiology between ME/CFS and long COVID, and the two diagnostic labels are not mutually exclusive. Importantly, some individuals with long COVID meet ME/CFS diagnostic criteria or have a dual diagnosis. |
ME Research UK commends the organisers—many of them volunteers—for organising a successful international conference. The presentations were consistently high in quality and broad in scope, and ME Research UK hopes that ISLC-PAIS will consider making the conference an annual or biennial event, as bringing leading researchers and others together supports the exchange of expertise, encourages collaboration, and offers hope to people affected by illnesses that fall under the PAIS umbrella.
Presentations covered scientific, clinical, and methodological perspectives on long COVID, ME/CFS and other post-acute infection syndromes. This variety helped delegates identify connections across disciplines and consider new approaches to shared research challenges.
The in-person format created valuable opportunities for researchers, clinicians and others working across the field to exchange ideas and discuss ongoing or published work, build relationships and explore future collaborations. These informal conversations complemented the formal programme and may help strengthen coordination across PAIS research.
The programme gave early-career researchers meaningful opportunities to present their work, receive feedback and connect with more established colleagues. Supporting researchers at this stage is important for developing expertise and sustaining future progress in ME/CFS, long COVID and wider PAIS research.
To build on the conference’s success, it is important to consider several challenges raised by attendees. For example, during a session introducing the new International Society for Long COVID and Post-Acute Infection Syndromes (ISLC-PAIS), delegates raised concerns about the society’s name, particularly its emphasis on long COVID and the implication that all cases of ME/CFS follow an infection. Prof. Eva Untersmayr made the same point during the conference, noting that not all cases of ME/CFS occur following an infection.
It was also stark that despite commitments made by ISLC-PAIS (for example on its website) people with lived experience were under-represented at the conference. Although artwork by people with severe ME/CFS was displayed, people with lived experience of ME/CFS, long COVID or other PAIS had little direct representation in the conference sessions themselves. Researchers often spoke on behalf of patients or people with whom they worked. Although this may help represent people with more severe illness, it should complement rather than replace direct involvement wherever possible.
A further barrier to participation were several obvious accessibility barriers to people with PAIS, including ME/CFS and long COVID.
Examples being:
- Delegates had to stand and queue at a microphone to ask questions. This arrangement was inaccessible to many people with ME/CFS and could trigger PEM, while also creating a barrier for others with limited mobility.
- A rest room was available at first but appeared to have been dismantled on the second day.
- The conference was not live-streamed, and recordings are initially available only at a cost (although the organisers aim to release them free of charge after six months). Live streaming is important for inclusion even when a conference is not open to the public. At an international event, researchers and others may be unable to travel because of health needs, caring or parenting responsibilities, or limited funding—particularly when dissemination costs are not covered.
It goes without saying that those with lived experience or ‘experts by experience’ are central to discussions, especially those from underserved groups. Additionally, attendees should not be viewed simply as ‘researchers’, ‘clinicians’ or ‘people with lived experience’, because many attendees belong to more than one of these groups (especially when recognising that lived experience can include being a parent or carer of someone with the disease of interest). In fact, people with both lived experience and research and/or clinical expertise can offer the field a valuable perspective that should be recognised rather than overlooked or marginalised, and organisers should recognise the full range of perspectives within their audience. This overlap is illustrated by the experiences shared in a powerful article by Zoe Sirotaik – a person with ME/CFS, researcher, and physical therapist – on the myth of recovery.
When similar points were raised during the Conference the organising committee offered reasonable explanations for some organisational choices, including the aim of helping researchers and clinicians generate new ideas.
Summary
Many funders, including the NIHR, now require people with lived experience to help shape or co-design research, including idea generation. Lived experience should therefore be treated as an integral part of research, and conference planning and execution. While there are instances researchers need to discuss ideas together – to focus purely on the ins and outs of the complex research itself – these discussions should occur within a wider landscape shaped by lived experience (and where possible, include researchers or clinicians who also have lived experience).
ISLC-PAIS 2026 Part 1: Highlights from ME Research UK–funded projects
ISLC-PAIS 2026 Part 2: Systems thinking, terminology, and negative trials
