*Anti-allergic/anti-inflammatory*


**Supplements** which may be tried for symptoms such as fatigue or cognitive dysfunction



For fully functioning services, we recommend 2–4 ME/CFS specialist doctors/ 1 million population, with a supporting multi-disciplinary team, to include professionals such as nurses, nurse practitioners, occupational therapists, psychologists, dieticians, social workers, etc.; these would staff outpatient services for diagnosis and follow up. The specialist may be a doctor with expertise in ME/CFS. Internists, neurologists, immunologists, rheumatologists, infectious diseases specialists, and general practitioners are particularly suited for this role, but it may be done by doctors of any specialty, as long as they have the right expertise or training. For children, this role is to be filled by paediatricians. At the time of writing, we are not aware of any specific programme for the training of doctors to become specialists in ME/CFS, something that has often occurred informally so far. The training and provision of services in secondary care should be aligned with the training of primary care physicians to manage cases in the community. We recognize that the above target is ambitious, considering the current capacity and status of service provision in

the continent. They should be seen as tentative and should not replace the assessment of patients' needs and structure and capacity of services at local and national levels.

The current reality of health services suggests that, where specialist services are not well developed, we follow a minimum standard of care for those with ME/CFS that may rely on virtual health and app-technology as well as on a strong partnership with primary care.

The minimum desirable is one ME/CFS centre providing specialist services for a 10 million population. These services should also consider the characteristics of the population, including ethnic and cultural diversity. Furthermore, we recommend that the specialist services should have the primary aim of confirming diagnosis and setting up treatment/management plans, which should be agreed upon and carried out by a multidisciplinary team. The follow-up could use multi-media approaches, such as remote consultations or telemedicine, as appropriate according to local circumstances and medical regulations. Local care for people with significant disability may need to be provided by primary care teams or local doctors with knowledge about ME/CFS, with support from the specialist services as appropriate. The option of smaller satellite clinics linked to the specialist service would provide full assistance for most and the "eyes" of a competent health professional, in support of remote consultations from the specialist for complex cases.

There is no suggestion that people with ME/CFS require more social support than people with other chronic diseases, and we are most certainly not implying that the disease is primarily psychological in nature. We are, though, very well aware that people with other chronic diseases, such as for example diabetes or multiple sclerosis, do not have the same problems of disbelief and lack of legitimisation experienced by people with ME/CFS. All people with chronic diseases need, and should be entitled to, social support, but few experience the same difficulty accessing it as people with ME/CFS.

Finally, it is important to consider that addressing the substantial needs of people with ME/CFS requires a multi-sectoral approach (Box 13), as well as ensuring that health services are organised and delivered effectively. Much of the needs of people affected by ME/CFS arise from their reduced ability to function in society and in more extreme cases on their total dependence on care for basic needs. Work, life, and education may be disrupted, with substantial economic and personal impacts on individuals and their families; lack of understanding and support, and often stigma, adding to the burden of physical suffering from symptoms. It is extremely important to prioritize research and education of health professionals and others in society, so as to address the scientific and societal poor understanding of the scale of the problem faced.

**Box 13.** Multi-sectoral approach to ME/CFS.

#### **Specific societal sectors**

Higher education:

• Development of training for under-graduates and post-graduates, including training for primary care staff and occupational physicians

Educational sector:

• Development of materials for teachers and education staff, as well as for pupils with ME/CFS and their parents

Work and pensions:

•

• Development of adequate instruments for assessing disability and flexibility in workplaces, particularly after returning to work, to minimise the risk of relapse

Health sector and public health:

	- ME/CFS services development and evaluation

Funding agencies and pharmaceutical industry:

• Research funding and support for well-designed clinical trials **Author Contributions:** Conceptualisation—L.N., F.J.A., R.C.W.V. and E.M.L.; methodology—L.N., F.J.A., R.C.W.V., and E.M.L.; validation— L.N., F.J.A., C.S., L.L., I.B.H., J.A.M., C.A.S., A.M.M., O.P., U.B., H.N., P.G., S.S., N.S., F.E.-L., P.Z., D.F.H.P., J.C.-M., G.K.S., E.C., I.B., J.C., A.K., J.B., M.M., R.C.W.V. and E.M.L.; formal analysis—not applicable; investigation— L.N., F.J.A., C.S., L.L., I.B.H., J.A.M., C.A.S., A.M.M., O.P., U.B., H.N., P.G., S.S., N.S., F.E.-L., P.Z., D.F.H.P., J.C.-M., G.K.S., E.C., I.B., J.C., A.K., J.B., M.M., R.C.W.V. and E.M.L.; resources—not applicable; writing—original draft preparation— L.N., F.J.A., C.S., L.L., I.B.H., J.A.M., C.A.S., A.M.M., O.P., U.B., H.N., P.G., S.S., N.S., F.E.-L., P.Z., D.F.H.P., J.C.-M., G.K.S., E.C., I.B., J.C., A.K., J.B., M.M., R.C.W.V. and E.M.L.; writing— review and editing— L.N., F.J.A., C.S., L.L., I.B.H., J.A.M., C.A.S., A.M.M., O.P., U.B., H.N., P.G., S.S., N.S., F.E.-L., P.Z., D.F.H.P., J.C.-M., G.K.S., E.C., I.B., J.C., A.K., J.B., M.M., R.C.W.V. and E.M.L.; visualization—not applicable; project administration—L.N., F.J.A., R.C.W.V., and E.M.L. All authors have read and agreed to the published version of the manuscript.

**Funding:** This research received no external funding. EUROMENE receives funding for networking activities from the COST programme (COST Action 15111), via the COST Association.

**Institutional Review Board Statement:** Not applicable.

**Informed Consent Statement:** Not applicable. The manuscript does include patient-related data or samples.

**Data Availability Statement:** No new data were created or analysed in this study. Data sharing is not applicable to this article.

**Acknowledgments:** The Latvian Council of Sciences is supporting the project No lzp-2019/1-0380 "Selection of bi-omarkers in ME/CFS for patient stratification and treatment surveillance/optimisation". The Open Medicine Foundation is supporting the ME centre in Uppsala in projects to identify diagnostic and prognostic biomarkers relevant for the clinical care of ME patients (and other related diseases).

This article/publication is based upon work from the COST Action "European network on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome", EUROMENE, supported by COST (European Cooperation in Science and Technology). COST (European Cooperation in Science and Technology) is a funding agency for research and innovation networks. Its actions help connect research initiatives across Europe and enable scientists to grow their ideas by sharing them with their peers. This boosts their research, careers, and innovation. www.cost.eu.

**Conflicts of Interest:** CS has a clinical study gran<sup>t</sup> and speaker honoraria from Takeda and Fresenius and is consultant for Celltrend. RV is consultant for Alfasigma SpA Bologna Italy. JAM has collaborated with Vitae, Pharmanord, Vinas Laboratories, in research on coenzyme Q10, NADH, selenium, and melatonin and has a patent with Grifols Laboratories for the use of alpha-1-antiprypsin in CFS. LN has been a Committee Member, UK NICE guidelines on ME/CFS 2021. JC-M has received research support and honoraria from VITAE Health Innovation, PharmaNord, Viñas Laboratories on treatments of Coenzyme Q10 plus NADH, selenium, and melatonin plus zinc in people with ME/CFS from Spain. All other authors declare no conflicts of interest.
