EMEA News Q2 2026

Care for ME in Belgium is still very limited and unevenly distributed. Within the official reimbursement agreement with the Belgian National Institute for Health and Disability Insurance (RIZIV/NIHDI), care is concentrated around the multidisciplinary diagnostic centre in Leuven. Other doctors, centres and healthcare providers work outside that convention and largely decide for themselves how they approach ME. As a result, the information, diagnosis, treatment or guidance a patient receives depends strongly on where they end up.

There is also a clear tension between policy, practice and the advice of the Belgian Superior Health Council. Historically, the Belgian approach has long been built around the CFS framework, with diagnosis based on the Fukuda criteria, in which PEM is not a mandatory core symptom. The Superior Health Council, however, places much more emphasis on PEM as a central feature of ME, no longer recommends graded exercise therapy (GET), and does not regard cognitive behavioural therapy (CBT) as a curative treatment, but at most as possible support.

Another major problem is that provision in Belgium mainly revolves around diagnosis and a temporary pathway. What is missing is broad and long-term medical follow-up by doctors who truly specialise in ME. Yet this is a chronic, complex and often disabling illness. In addition, symptoms and comorbidities such as orthostatic intolerance, POTS, MCAS, irritable bowel syndrome and fibromyalgia are still not taken into account systematically enough, even though these problems can strongly determine daily functioning.

For patients, this means that they often have to manage the coordination of their own care. They are further burdened with the need to continually justify their limitations and risk losing - or have already lost - their benefits, with devastating consequences.

Stigma remains a heavy burden. ME is still too often viewed as though symptoms are mainly maintained by psychological or behavioural factors. As a result, patients repeatedly have to justify their limitations, their need for rest and their inability to simply build up activity. That lack of recognition adds an extra burden on top of the illness itself.

Socially and financially, ME patients also remain vulnerable. Systems for disability recognition, assistive devices, work incapacity and benefits are often not adapted to energy-limiting illnesses. Recently, even patients who had been considered by the RVA as unable to be guided towards work lost their benefits, with serious consequences. In this way, ME patients are confronted not only with a disabling illness, but also with a healthcare and social system that still does not sufficiently understand their reality.

We represent a country where the condition remains severely under-recognised. There are no national guidelines, no specialist services, and patients are frequently misdiagnosed. We estimate thousands are affected, yet most have no local support. Our priority is awareness-raising, translating EMEA materials into Bulgarian, and beginning dialogue with the Ministry of Health and researchers.

The Croatian ME Association was instrumental is getting our MEP Romana Jerković to submit Parliamentary questions to the European Commission about ME/CFS. We asked:
1. How is the Commission supporting the Member States in establishing a research strategy and funding a harmonised ME data collection and reporting system and what is the timeline for implementation?
2. How is the Commission assisting the Member States in integrating ME education into medical curricula and postgraduate training, ensuring that it aligns with international clinical guidelines and includes competencies, assessments and audits? One can read the Commission's answer here:
https://www.europeanmealliance.org/news-Q42025-emea-eu-questions.shtml

ME Foreningen is engaging in long-standing information and advocacy efforts with the Danish Health Authorities because clinicians are not using the WHO ICD Code to diagnose ME and we need them to do so.
Dr Jesper Mehlsen, Co-Chair of the European ME Research Group, and Catherine Essig, then President of the Danish Society for ME, had informed WHO Europe's Regional Director, Dr Hans Kluge, about the situation in Denmark during EMEA's meeting with him in 2023.
https://europeanmealliance.org/emea-news-whoe-2410.shtml

Finland has a consensus guideline on the treatment of ME/CFS, published by an esteemed medical society in 2021.
However, not a single university or private hospital has implemented it.
The Finnish Medical ME/CFS Association made it easier for healthcare professionals and patients to use the guideline by providing a public chatbot that allows users to ask questions about it. https://mebotti.slme.fi/

In France, Association Française du Syndrome de Fatigue Chronique, supports people with ME and related post-infectious conditions through information, guidance, and advocacy.
We are assisted in our task by a scientific council bringing together professors and doctors specialised in various fields of medicine, thus offering access to expertise on the various aspects of the disease.
Our organization has published a Pacing Guide to help patients and doctors know that Post-Exertional Malaise is real.

Germany has dedicated 2026-2036 as a National Decade Against Post-Infectious Diseases which is a landmark for Europe’s ME and Long COVID response. This is a ten-year commitment to advance biomedical and clinical research on ME/CFS, Long COVID and related conditions. For patients, it offers long overdue recognition and hope for tangible, evidence-based progress. Fatigatio e.V. - welcomed the National Decade but stresses that funding must remain focused on biomedical research, diagnostic advancement and effective treatments. The organisation also highlighted that ME, Long COVID and Post Vac Syndrome need distinct research approaches; that psychosomatic models cannot address the biological nature of these diseases; that children face significant care gaps; and that access to off-label treatments remains deeply unequal. You can read more about the initiative here:
https://www.europeanmealliance.org/news-Q12026-german-research.shtml

Iceland has a national treatment and service centre for ME and Long Covid patients, the Akureyri Clinic. https://www.investinme.org/iimer-newslet-240801.shtml • Our organisation maintains ongoing dialogue with the clinic, healthcare professionals, and public institutions to help improve care
pathways and patient experiences.
• We can share our experiences and provide guidance on how a similar clinic and support structure could be established in your country.
• However, the existence of a national clinic does not mean that all ME patients receive adequate care or understanding within the wider healthcare system.
• The clinic is underfunded and does not currently have the capacity to serve all patients in need.
• Currently a working group at the Directorate of Health is reviewing international ME diagnostic criteria and rehabilitation approaches for Iceland.
• The group is preparing a final report for the Minister of Health.
• It is positive that ME-related issues are being formally reviewed. However, there is no guarantee the conclusions will meet patients’ needs. There is also no guarantee the recommendations will be implemented. https://mefelag.is/

The Irish ME Trust was established in 1989 to provide information and a counselling service to those affected with ME as well as targeting individual problems on behalf of people with ME.
Aside from our physical meetings and weekly online meeting, we are assembling a group of ME patients around May 12th, International ME Awareness Day, for a wellness gathering which will include various therapies and talks over a period of 3 days.
Engaging with our national health executive is ongoing and it is promised that Ireland will have national clinical guidelines in the not-too-distant future.
IMET are also a sponsor of Invest in ME Research's International ME Conference Week in May - as they have been during all twenty years of these conference weeks. https://www.imet.ie/index.html

The situation in Italy is far from satisfactory for people with ME. The condition is not recognised, most general practitioners are unaware of it, as only very few universities mention it - and only within neurology specialisation classes. Most of Italy's leading experts are retired. Those seeking a diagnosis have very few options, and even fewer when it comes to therapeutic support. Patients are largely left to manage alone, which is our greatest concern.
The only national document on the condition is 12 years old, and some sections were already outdated by the time of publication. Organisations such as ours, CFS/ME - OdV, provide vital guidance, but can only do so much, being composed of volunteers who are themselves ill and working without pay.
https://www.cfsme.it/

The Lithuanian Independent Living Association has collaborated with EMEA on formal letters to national disability, human rights, and health authorities to address the neglect of housebound and bedbound Lithuanians with ME/CFS symptoms. Despite these efforts over several years, there has been no result.
Currently, there is a distressing lack of interest from the public, humanitarian organisations, health authorities, and other institutions in the plight of these citizens, leaving them without the basic assistance or recognition they desperately need.
https://www.savarankiskasgyvenimas.lt/

A delegation from the ME/cvs Vereniging recently visited researchers Rob Wüst and Jörg Hamann to present a €20,000 donation for biomedical research.
The funds are split between two key areas:
• Muscles: Research led by Rob Wüst into muscle dysfunction.
• The Brain: Research led by Jörg Hamann into neurological impacts.
During the visit, the delegation received expert presentations on both studies, gaining direct insight into the latest scientific progress regarding the biological mechanisms of ME/CFS.
https://www.me-cvsvereniging.nl/

Norway has a competence centre on ME/CFS and is updating its clinical guidelines for the disease.
A consultation draft has been sent out with a deadline of May 2026 with a scheduled publication date of January 2027. https://www.me-foreningen.no/

In Serbia, clinicians and researchers are supporting patients by educating their colleagues and politicians about ME. SHUKS, the ME Patient Organisation in Serbia, participates in the annual symposium organised by Professor Branislav Milovanović, a member of the European ME Research Group (EMERG), and President of the Section for the Autonomic Nervous System of the Serbian Medical Society.
The symposium takes place under the patronage of the Ministry of Health of Serbia with the support of professional and patient organisations across the region (e.g. Slovenia and Croatia). You can read more about the annual Serbian symposium and watch the 2025 conference video here:
https://www.europeanmealliance.org/news-serbian-conference25.shtml

Spain ONG PEM
Currently the key issue is lack of official recognition, persistence of outdated and harmful clinical approaches, and absence of appropriate clinical pathways for people with ME. For that reason, ONG PEM is actively advocating for the official recognition of Myalgic Encephalomyelitis (ME) within the national health system and engaging with the Ministry of Health. We produce and disseminate evidence-based materials to counter misinformation and harmful practices, including recent work on the central sensitisation hypothesis and the lack of scientific rigour in the use of the terms "central sensitivity/sensitisation syndromes" in relation to ME, as well as on clinical diagnosis and contraindication of exercise.
https://www.ongpem.org/

Spain CONFESQ https://confesq.org/
CONFESQ is raising awareness through the documentary Severe Myalgic Encephalomyelitis, Voices in the Shadow, which is currently being promoted across different regions. Around 12 May, this work will also be supported by a public event in Madrid bringing together authorities, clinicians, patient representatives and the general public, with the aim of improving the visibility and recognition of ME. (Add link to video) https://confesq.org/

ME in Sri Lanka is an urgent need for awareness and research. The prevalence of ME in Sri Lanka remains unknown. To date, no formal epidemiological studies have been conducted, and there are no clearly identified patient groups or established diagnostic pathways. As a result, many individuals with suspected symptoms remain undiagnosed and unsupported.
Despite this lack of formal recognition, there is a growing number of individuals - predominantly women - reporting persistent and debilitating fatigue, particularly following COVID-19 infection. While systematic data is lacking, it is reasonable to assume that a proportion of the population may be affected by ME or related post-viral fatigue conditions.
In response to this gap, we at Sahana South Asia are working towards conducting the first prevalence survey of ME in Sri Lanka, in collaboration with local institutes. Our aim is to generate foundational data to better understand the scale of the problem, support clinicians in recognising and diagnosing the condition, and inform policymakers to develop appropriate healthcare strategies and policies. A significant barrier to care is the stigma surrounding chronic fatigue, which often discourages individuals from seeking help or discussing their symptoms. To address this, we have developed a website and a social media platform to raise awareness, foster open conversations, and provide a supportive space for those affected. Importantly, this is not an issue unique to Sri Lanka.
Similar challenges exist across much of South Asia, where awareness, diagnosis, and support for ME remain limited. Our mission is to increase awareness, provide support, initiate patient support networks, and drive broader advocacy efforts across the region.

In Sweden there is a smear campaign towards ME and Post Covid patients. An informal group of doctors, the so-called functional list, actively advocates a psycho-social explanation for these diseases. In the general health care system one single clinic, in Stockholm, is responsible for investigation and diagnosis of patients with post-infectious diseases. Two clinics, in Gothenburg and Linköping, are tasked with investigating these patients, but in practice they remove ME diagnoses and question the Canadian criteria. A new facility for people with post-infectious symptoms is due to open in Malmö, in southern Sweden, but has been delayed. RME, the Swedish ME association, is working actively, both nationally and regionally, to ensure that specialist clinics are established in all healthcare regions. The National Board of Health and Welfare in 2024 published guidelines for post-infectious conditions including ME/CFS. These guidelines are incomplete and partly incorrect and have been heavily criticised by both patient organisations and professionals.
https://www.europeanmealliance.org/emeasweden.shtml

ME Switzerland supported the 2025 Swiss vote to develop a national strategy on ME/CFS and Long Covid. This will be the first such strategy in Europe. It will mandate action by the health system to address the needs of patients.
One can read more about the Swiss national strategy here:
https://www.europeanmealliance.org/news-Q32025-003-2.shtml

Invest in ME Research is leading UK charity dedicated to biomedical research into ME. Over the past two decades the charity has built the European infrastructure for ME research, initiating and supporting the European ME Research Group (EMERG), the European ME Clinicians Council (EMECC), the Young EMERG early career researcher network, and co-founding the European ME Alliance itself.
The charity is made up entirely of volunteers who perform their work with no salaries, working for over a decade to establish a UK and European Centre of Excellence for ME at Norwich Research Park - funding five PhDs, the first dedicated ME research fellowships (the Ian Gibson Fellowship and the LunaNova Fellowship), and what was until recently the only clinical trial for ME currently running in the UK.
The charity also supported the November 2025 UK Parliamentary debate on ME and has advocated for the rights of people with ME and their carers in the face of establishment organisations' attempts to maintain the unsatisfactory status quo in UK.
In 2026 - the twentieth anniversary of its founding - Invest in ME Research hosts its annual Conference Week in late May, bringing together researchers, clinicians and patients from over 20 countries across the BRMEC15 colloquium, IIMEC18 conference, EMERG AGM and Young EMERG workshop.
https://www.investinme.org