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“Understand, Diagnose, Treat” – reflecting on ME/CFS Conference 2023

“Understand, Diagnose, Treat: ME/CFS Conference 2023″ took place at Charité Universitätsmedizin Berlin on 11 and 12 May 2023, and was attended, online, by ME Research UK. The conference brought together researchers, clinicians and experts from across the world to discuss the latest evidence and findings related to ME/CFS.

The conference is available to watch online thanks to the ME/CFS Research Foundation, which sponsored the event.

Amongst the presenters were Prof. Carmen Scheibenbogen (who presented “ME/CFS as Part of the PCS Spectrum” and also co-chaired the ‘Diagnosis’ section of the conference), Dr Francisco Westermeier (“Assessing Endothelial Dysfunction”), Prof. Leonard Jason (“Predictors of ME/CFS following EBV and implications for PCS”), Dr Nuno Sepúlveda (“EBV Mimicry in ME/CFS”), Dr Bhupesh Prusty (“Mitochondrial Dysfunction and Herpesviruses in ME/CFS”) and Dr Luis Nacul (who presented “Treating ME/CFS – State of the Art” and also co-chaired the ‘Treatment’ section of the conference. All of of these have been, or are currently, funded by ME Research UK.

The conference focused on three main areas: the understanding, diagnosis and treatment of ME/CFS and post-COVID syndrome (also known as long COVID). Within these three key areas, the importance of the following aspects were highlighted:

  • Accurate and early diagnosis of ME/CFS, with early access to treatment 
  • Identification of distinct symptom profiles 
  • Individualised care which takes into account the needs and circumstances of individuals
  • A multi-professional team approach to care 
  • The need to increase health professionals’ knowledge of ME/CFS

Evidence has shown that ME/CFS affects multiple systems of the body. Talks at the conference reflected this, and considered a wide range of topics including autonomic dysfunction, breathing and muscular dysfunction, sleep disturbance, hypermobility, endothelial dysfunction, mitochondrial dysfunction and immunoadsorption. ME Research UK has funded, and continues to fund, a range of projects across these areas, information on many of which can be found on our website.

Talks at the conference also stressed that people with ME/CFS are a heterogeneous group. This means that symptom profiles differ between those with ME/CFS, and between subgroups; for example, between children and adults, between those with mild and severe ME/CFS, and between those with and without additional health problems.

The fact that ME/CFS affects so many systems of the body, and also presents differently in different people, means that research into understanding the disease and developing diagnostic tests and treatments is not straightforward. Talks at the conference discussed some of these complications in more detail, and emphasised avenues to be investigated to minimise their impact, both in research and also for healthcare professionals. 

Accurate and early diagnosis of ME/CFS with early access to treatment 

Prof. Uta Behrends discussed the importance of an accurate diagnosis of ME/CFS. This was in relation to research, but also in relation to the treatment of those with ME/CFS where the need is not only for an accurate diagnosis, but also early diagnosis to ensure access to the appropriate treatment is provided as soon as possible, something that was also emphasised by Dr Luis Nacul.

Across the conference, the importance of testing for autonomic dysfunction when making a diagnosis of ME/CFS was also raised. Many people with ME/CFS live with autonomic dysfunction; one ME Research UK-funded project found that three-quarters of the people they studied had dysfunction of the autonomic nervous system. Despite this, no formal testing is usually done. The need for autonomic testing is an ongoing area of research and discussion, and one that we have highlighted previously.

In research, how ‘cases’ or people with a specific illness or disease of interest are diagnosed is key. An incorrect diagnosis can lead to incorrect results, or results that do not accurately reflect what is happening in the population of interest. How ME/CFS is defined and diagnosed is an entire area of scientific literature in itself.

Different criteria exist and are legitimately available for use by researchers. In addition, some studies include subjects who self-diagnose, who are unsure or were never told under which criterion they were diagnosed initially. Furthermore, funding limitations often mean that researchers do not have the resources to assess each person individually and so must rely on less reliable data, such as clinical notes.

These different ways of identifying or diagnosing, ‘cases’ makes comparing studies more complicated. To help with this issue, researchers should be transparent when reporting the methods they used, and Prof. Behrends recommended that, currently, the Canadian Consensus Criteria is the preferred criterion to use in research studies.  

Identification of distinct symptom profiles 

A talk by Prof. Pawel Zalewski discussed the possibility of identifying distinct ‘phenotypes’ or symptom profiles in those with ME/CFS. His presentation focused on autonomic dysfunction and discussed how being able to accurately identify these symptom profiles would enable more specific treatments to be developed.

Prof. Zalewski highlighted that identification of these subgroups may help to ensure that treatments are safer and more effective for those with ME/CFS. This would reduce the need to use treatments broadly across all those with ME/CFS, which, although they may be beneficial to one subgroup, may not be useful and could potentially cause harm in others. 

Individualised care which takes into account the needs of individuals and their circumstances

Another area discussed was the need for individualised care with follow up in ME/CFS, and this particularly highlighted by Dr Luis Nacul who included information on treatment goals from the European Network on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (Euromene).

Individualised care enables care to be tailored by not only considering the person’s symptom profile, but also by taking into account their individual circumstances, such as the level of support they have available and the environment they live in. Follow-up appointments were also recommended to ensure that the treatment plan stays relevant to the individual over time. Again, the focus here was that, rather than using a broad-stroke approach to care, it is essential to consider individual needs and symptoms, and to tailor care accordingly, based on the best available evidence.

A multi-professional team approach to care 

In addition to individualised care, the need for a multi-professional team approach was discussed by both Prof. Johannes-Peter Hass and by Dr Luis Nacul. As mentioned previously, ME/CFS is a disease affecting multiple systems of the body. This means that it is unlikely that a single healthcare professional will be able to deal with all the symptoms presenting in one individual.

A better, ‘multi-professional’ approach sees a range of healthcare professionals working together. One example of this may be the combination of general practitioner, dietician, neurologist and physiotherapist, although the exact professionals involved would depend on the needs of the individual with ME/CFS.

The need to increase health-care professionals’ knowledge of ME/CFS

Within the discussion around the need for a multi-professional approach to care, the need to increase healthcare professionals’ knowledge of ME/CFS was also highlighted. Multi-professional approaches to care require not only good communication between healthcare professionals, but also for them to have a good level of knowledge of ME/CFS. This knowledge often comes from access to evidence-based training that includes findings from up-to-date, high-quality biomedical research.


Presentations at the conference highlighted the complex, multisystem nature of ME/CFS and how this can lead to complications in researching and treating the disease. Presenters, including Prof. Pawel Zalewski and Dr Luis Nacul, stated that due to the complex nature of the disease there is unlikely to be a “one size fits all” approach to treatment and symptom management.

Talks stressed the need for more targeted treatments based on specific groups of symptoms, and for care to be provided by multi-disciplinary teams, that better take into account the needs of individuals. Dr Nacul referred to this as “evidence- and patient-based care with shared decision making”.

In order for healthcare professionals to be able to provide such care, they need access to more good-quality biomedical research into the treatment, causes and consequences of ME/CFS, such as that funded by ME Research UK.

A full scientific report has been published (Sept 2023) but behind a paywall.

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