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Invest in ME Research conference – highlights part 1

The 15th Invest in ME Research International Conference took place on 2 June 2023 at Hinxton Hall Conference Centre, near Cambridge, UK, and ME Research UK attended.

The conference provided the opportunity for researchers, clinicians, people with ME/CFS and carers to listen to the latest research and clinical developments relating to the disease. Those presenting their work at the conference, and at the colloquia which preceded it, included ME Research UK-funded researchers such as Dr Bhupesh PrustyDr Kiran Thapaliya and Prof. Elisa Oltra.

Key topics discussed included: 

  • The diverse, multifactorial and complex nature of ME/CFS;
  • Viruses, in particular viral reactivation, and viruses in the gut microbiome;
  • The need to look at all areas of research relating to ME/CFS in different groups – for example, by sex, age, and length of illness;
  • The need for collaboration, where researchers from different areas work together.

We have split our summary of the conference into two parts. This is part one, which provides information on the key topics discussed. Part two will follow, and will consider research presented at the conference looking at the diverse, multifactorial and complex nature of ME/CFS in more detail.

ME/CFS is diverse and complex

Professor Simon Carding opened the conference and highlighted that ME/CFS is a complex disease which affects multiple systems of the body. This was reflected in the diverse nature of talks presented across the conference, and in the evidence presented showing differences between people with ME/CFS and those without, and relating to the immune system, cardiovascular system and energy metabolism in the body.

The idea that ME/CFS is a complex disease affecting multiple systems of the body was also clear from talks at another recent conference, “Understand, Diagnose, Treat: ME/CFS Conference 2023″ in Berlin in May.

Viruses and the gut microbiome 

One of the recurring areas of interest at the conference was viruses and viral reactivation. Viral reactivation is a process whereby a virus that has infected a cell and has been lying dormant or inactive, switches to an active phase of replication, known as the lytic phase, which allows the virus to spread. Things such as stress, infection by another virus, and physical changes such as fever and menstruation can all lead to viral reactivation.

Profs Klimas and Hanson both considered the history of ME/CFS in their talks, and discussed the role of viruses and viral reactivation. Prof. Klimas reminded conference attendees that the role of viral infection as a trigger in ME/CFS and viral reactivation is not a new area of research, stating that in 1990 her work was published identifying poor antiviral function and EBV reactivation in people with ME/CFS. However, she suggested that COVID-19 and the emergence of long COVID provide an opportunity to better understand the role of viral reactivation in the risk of, and persistence of illness.

Profs Klimas and Hanson spoke about the possibility of ME/CFS and long COVID arising due to an asymptomatic infection, where a person may not be aware they have the initial infection. Prof. Klimas suggested that all cases of ME/CFS might, in fact, be due to a viral infection, hypothesising that this infection could either be:

  • A symptomatic viral infection, where the person is aware they have the virus and display symptoms; or
  • An asymptomatic infection, where no symptoms of the viral infection are displayed.

COVID-19 was used as an example of this, where many people contracted the virus and, although they did not display symptoms, were able to transmit the infection to other people. Prof. Klimas hypothesised that this asymptomatic infection could explain why some cases of ME/CFS appear to have started due to trauma, or a life event in the absence of a virus. Rather, there may have been a coinciding asymptomatic viral infection, or stress-induced reactivation of a virus from a prior, potentially asymptomatic infection.

Prof. Simon Carding also about spoke viruses and viral reactivation relating to the gut microbiome in a presentation about work at the Quadram Institute. The gut microbiome includes all the micro-organisms such as bacteria, fungi and viruses that live in the gut alongside their genes. Microbes in the gut play a huge role in the day-to-day functioning of the body; for example, they work together to process the food we eat, provide an important source of essential nutrients (such as vitamin B12), and can influence behaviour and mood. Prof. Carding discussed how changes to the gut microbiome, specifically viruses, may be related to ME/CFS.

Dr Prusty also discussed viral reactivation specifically relating to human herpes virus infection such as Epstein Barr virus (also known as glandular fever), human herpesvirus 6 , human herpesvirus 7, and the development of ME/CFS. (ME Research UK has written about this topic before.) Dr Prusty also discussed work funded by ME Research UK considering how HHV infection could lead to mitochondrial dysfunction.

The disease process linking viral infection to energy issues is an area that needs more research; in fact, one of the questions posed by Prof. Klimas was “how do you tie Epstein Barr virus infection with energy issues?” One presenter at the conference, Dr Robert Phair, did present a theory, or hypothesis, called the “Itaconate Shunt Hypothesis” which suggests that in people with ME/CFS, the body’s response to an infection is altered and enters a prolonged state of inefficient energy production.

ME/CFS in different groups 

Dr Vicky Whittemore discussed updates on ME/CFS research from the USA, and highlighted the need for researchers to consider distinct groups of people with ME/CFS (such as considering men and women separately). This had also been discussed in talks at the recent ME/CFS Conference 2023 in Berlin.

Evidence has shown that ME/CFS presents differently in different populations. For example, by severity of disease, by duration of illness, between men and women, and between children and adults. Therefore, it is important to account for these variations in research, by looking at groups separately, or by using adjustments and investigating subgroups in statistical analyses.

In summation, the Cambridge conference heard of both the need to carry out research into men as well as women with ME/CFS, and the need to consider all severity groups of ME/CFS. These discussions also highlighted the lack of research in those people categorised as having severe or very severe ME/CFS.

In fact, much of the research presented at this conference did include, or focused on, people with severe ME/CFS. For example, Prof. Carding spoke about work looking at the gut microbiome in people with severe ME/CFS, Prof. Jonas Bergquist discussed work which involved visits to people with severe ME/CFS in Sweden, and Dr Dag Storla presented work relating to treatments in a clinic in Norway for people with severe ME/CFS.

Despite this, Prof. Carding stated that while people with severe ME/CFS are thought to account for 25% of all those with the disease, research into severe ME/CFS accounts for only 1% of that which has been conducted into the disease. This is thought to be predominantly due to limited accessibility of research studies, and that the health burden of those with severe ME/CFS makes it very difficult to engage. This challenge is something that ME Research UK has written about previously, and work by Victoria Strassheim and colleagues, funded by ME Research UK, has contributed, alongside other research, to recommendations for researchers to follow to support the inclusion of those with severe ME/CFS in high quality research.

Collaboration is needed 

The complex nature of ME/CFS, and the fact that it affects multiple systems in the body, means that it needs researchers from different areas to work together, or collaborate on research projects. This was something that was highlighted by Dr Vicky Whittmore, whose talk on research updates from the National Institutes of Health (NIH) in the USA emphasised the need to work across institutes to advance research into ME/CFS. Dr Whittmore also talked about collaborative and communication tools that have been developed in the USA to aid researchers build connections:

  • mapMECFS is an online data sharing portal aiming to provide researchers with a platform to search for and access data from a wide range of biomedical studies on ME/CFS;
  • searchMECFS is an online search tool to help researchers identify and request samples of biological material (such as blood) and clinical data for ME/CFS research.

These tools are part of the ME/CFS Research Network (MECFSnet) which is funded by the NIH. Currently, the tools are not inclusive of all ME/CFS research projects, and ethical restrictions mean that data sharing is not always possible. However, the development of the tools does provide an accessible opportunity for researchers to explore results of studies investigating ME/CFS, and potentially to connect their work through collaboration with a view to advancing biomedical research into ME/CFS.

This need for collaboration in research into ME/CFS involving multidisciplinary teams and partnerships is something that has also been recognised in funding opportunities such as the UKRI Researching ME/CFS: Highlight Notice which ME Research UK reported on.


The research and updates presented at the conference focused on the need for collaborative research which considers different groups of people with ME/CFS. It was also clear from the presentations that research into viruses, particularly viral reactivation, and the role they play in ME/CFS has been re-energised with the COVID-19 pandemic and emergence of long Covid, something that Prof. Nancy Klimas highlighted specifically.

More research is needed to understand whether viral activity contributes to the disease process in ME/CFS, and also to consider which specific viral species are most involved. This is something that a new ME Research UK funded project, led by Dr Amy Proal from the PolyBio Research Foundation in the USA, will look at. Specifically, Dr Proal and her team will look at identifying viruses in tissue and nerve samples from ME/CFS patients.

Read part 2 here

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