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Information on the diseases ME/CFS, Long-COVID, post-COVID

ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome) is a complex, severe disease of the nervous and immune system. ME/CFS is predominantly post-infectious, also as a result of COVID-19, and is the most severe form of post-COVID syndrome. ME/CFS sufferers have pronounced physical and cognitive symptoms, a very low quality of life and often a high degree of disability. 60-75% of all sufferers are unable to work, many of whom are house or bed bound. The main symptom is severe exercise intolerance with worsening of symptoms after everyday activities (post-exertional malaise = PEM).

The diagnosis of ME/CFS is complex due to the lack of specific biomarkers (especially the multidisciplinary exclusion diagnostics) and there is currently no causal therapy. The care situation is currently inadequate. Misdiagnosis and secondary damage are not uncommon. Adults with ME/CFS currently have little prospect of recovery and reintegration into working life. The prognosis for children and adolescents is considered better. Long school absences are the rule. For most of those affected, participation in normal life with work, education, friends, sport, music, etc. is not possible.

The high number of people affected is an increasingly critical factor for all areas of medical and psychosocial care as well as economically, due to the loss of training and labour as a result of illness.

Source: Statement by Prof C. Scheibenbogen and Prof U. Behrends as part of the hearing on ME/CFS in the Health Committee of the German Bundestag (April 2023): https://www.bundestag.de/ausschuesse/a14_gesundheit/oeffentliche_anhoerungen/936116-936116

Download link of the statement here.

In Germany, over 500,000 people were affected by ME/CFS in 2021 (source 1). This includes around 65,000 children and adolescents. Internationally, over 34 million people have ME/CFS (source 2). As a result of the pandemic, over 600,000 people are currently expected to be affected in Germany, as some of those affected by Long COVID will also develop ME/CFS. 60-75% of all sufferers are unable to work, many of whom are house or bed bound.

Sources:

1: Statement by the Association of Statutory Health Insurance Physicians as part of the ME/CFS hearing in the Health Committee of the German Bundestag (April 2023): https://www.bundestag.de/resource/blob/943000/60468062de2e557ef6436afb4e5c9173/20_14_0095-5-_Kassenaerztliche-Bundesvereinigung_ME-CFS_nicht-barrierefrei-data.pdf

2: Extrapolation based on the number of 500,000 people affected (Germany) and various international estimates, which assumed 17 million people affected by ME/CFS before the pandemic.

ME/CFS is one of the diseases with the lowest quality of life of all. In some cases, it is lower than in patients who have had a stroke, heart failure or cancer. Various studies have measured the lowest vitality and functionality scores of all chronic diseases in patients with ME/CFS (Source 1). Adults with ME/CFS currently have little prospect of improvement and reintegration into working life. The prognosis for children and adolescents is considered better. Long school absences are the rule. For most patients, participation in normal life with work, education, friends, sports, music, etc. is not possible (source 2, also for the following statements).

The disease ME/CFS was included by the WHO as a neurological disease in the International Classification of Diseases in 1969 (ICD G93.3). Nevertheless, little research was carried out on this topic for decades. Biomedical and clinical research, in particular, lay dormant for a long time. Experts believe that one reason for the lack of research is that there was little government funding available internationally for research in this area. In Germany, there was no official research funding for ME/CFS until 2020.

In addition, most doctors are still inadequately trained to diagnose and treat ME/CFS. There is a lack of specialised outpatient clinics (in Germany, these only exist in Berlin and Munich). The diagnosis and care situation for patients is very poor. Just like doctors, most medical experts advising on social help/care requests are not sufficiently familiar with ME/CFS. Often, their considerations do not take sufficient account of the symptoms of ME/CFS. As a result, medical and social benefits are withheld from patients or made extremely difficult (e.g. reimbursement of wheelchairs, care services, recognition of the degree of disability, early retirement, ...). Care, nursing and social services are predominantly a burden on relatives, family and friends. Many families and partnerships break down due to the combination of overload, lack of recognition and lack of prospects. The most common cause of death among ME/CFS patients is suicide due to the lack of prospects.

Sources:

1: see chart "ME/CFS - Quality of life" and further data on the website of the German Society for ME/CFS: https://www.mecfs.de/daten-fakten/

2: Statement by Prof C. Scheibenbogen and Prof U. Behrends as part of the hearing on ME/CFS in the Health Committee of the German Bundestag (April 2023): https://www.bundestag.de/ausschuesse/a14_gesundheit/oeffentliche_anhoerungen/936116-936116
Download link of the statement here.

In connection with a previous SARS-CoV-2 infection, various long-term health effects have been observed, which are summarised under the term "Long COVID". These are health complaints that persist or reappear beyond the acute phase of a SARS-CoV-2 infection of 4 weeks. These can affect different organ systems, cause different symptoms and also have different causes.

Source: RKI - Coronavirus SARS-CoV-2 - Long COVID (as of 22 August 2023), https://www.rki.de/SharedDocs/FAQ/NCOV2019/FAQ_Liste_Gesundheitliche_Langzeitfolgen.html

Post COVID syndrome refers to symptoms that are still present more than 12 weeks after the start of the SARS-CoV-2 infection and cannot be explained in any other way. "Long COVID" therefore includes both symptoms that persist 4 to 12 weeks after the onset of symptoms following an acute COVID-19 illness and "post-COVID 19 syndrome".

In a study from Germany, the frequency of post-COVID-19 in the period of 6 to 12 months after a SARS-CoV-2 infection is estimated to be at least 6.5% in predominantly non-hospitalised patients. Analyses of routinely collected outpatient data from statutory health insurance in the four billing quarters in 2022 arrive at roughly similar estimates of the frequency of a post-COVID-19 condition, ranging from 7% to 13%. However, it can be assumed that the prevalence of long COVID is rather underestimated overall on the basis of billing data from social insurance providers, as not all people with long COVID are recorded here.

Source: RKI - Coronavirus SARS-CoV-2 - Long COVID (as of 22 August 2023), https://www.rki.de/SharedDocs/FAQ/NCOV2019/FAQ_Liste_Gesundheitliche_Langzeitfolgen.html

Information on the ME/CFS Research Foundation

ME/CFS Research Foundation promotes and finances the development and expansion of biomedical research into the diseases ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) and Long COVID. The non-profit organisation aims to enable better diagnostics, therapies and care.

Due to insufficient research to date, there is still no causal therapy. And there is a general lack of medical awareness and recognition of these complex multi-system diseases, which means they are often misdiagnosed and treated incorrectly.

Our commitment is initially focussed on Germany and is intended to have a Europe-wide impact in the future.

The Foundation's priorities and planned activities were set out in the Research Funding Strategy (as at August 2023) , recently.

Using donations effectively

With the help of donations, selected research capacities at university institutions are expanded and sustainably funded. The selection of the research projects to be funded is supported by a team of international experts in the Scientific Advisory Board of the ME/CFS Research Foundation .

We are funding a research project on ME/CFS biomarkers at the Charité . Further projects are in preparation. In 2022, important preparatory work for studies on the Charité Fatigue Center were supported. These preliminary projects have been later included in the Federal Ministry of Education and Research (BMBF) . The collaboration named National Clinical Study Group (NKSG) researches the effect of already drugs and medical therapies approved for other diseases in their effect in ME/CFS and post-COVID patients. 

Since its foundation (early 2022) until the end of 2023, around 823,000 euros in donations have been acquired. To date, almost half of the donations have been used for direct project funding. Currently, 438,000 euros (as of December 2023) are available for future funding measures. Costs for administrative tasks are fully financed by the founder and managing director Jörg Heydecke.

Providing information, creating transparency, networking researchers

In order to record the current state of research and make it transparent, the Foundation has developed the ME/CFS Research Register (beta). It provides an overview of the most important research work - from current projects, publications and working groups to scientific events such as conferences. This information serves as a networking tool for researchers themselves as well as a research tool for medical professionals, politicians, journalists and those affected. Currently, the register initially records the current status of ME/CFS research in Germany and Austria (in English). ME/CFS research projects, participants, publications, etc. from other countries will be added gradually in the future.

In addition, the ME/CFS Research Foundation supports conferences, symposia and other formats for scientific exchange and for informing those affected and the public about ME/CFS research. So far the international ME/CFS conference and the ME/CFS Symposium took place in cooperation with the Charité Fatigue Center in May 2023. We also provided a follow-up documentation of both events.

Please find more details in our 24 month review of the foundation's work (as at Dec.23)

The ME/CFS Research Foundation was founded by Jörg Heydecke (family member of an ME/CFS patient, entrepreneur) in early 2022. A team of patients, relatives and committed supporters are now actively involved in the foundation (see "About us"). An international scientific advisory board supports the foundation, especially in its research funding strategy. In Germany, the Foundation is networked with almost all ME/CFS researchers and there are also good international contacts, including through the ME/CFS conference at the Charitéas well as the ME/CFS Research Register. Both are important projects of the foundation that promote scientific exchange. 

We work closely with the patient organisations for ME/CFS and Long-COVID, who have long been working to improving the situation. And we co-operate with other foundations (charities) in the field of ME/CFS research.

Jörg Heydecke explains his motivation: "Before mid-2021, there was no public research funding for ME/CFS in Germany. For me as the father of a (then) 18-year-old patient, this was unbelievable: there is a serious illness, around 60% of patients are unable to work as a result and nobody cares. Doctors are still fobbing off patients suffering from ME/CFS with embarrassing diagnoses such as psychosomatic illness - and this even happens at university hospitals!" A misdiagnosis can have dramatic consequences for those affected, criticises Heydecke. "It was only throughLong-COVID that these diseases were recognised as a relevant problem. There is now even initial research funding at federal and state level. This is a start, but it is still far from enough.

ME/CFS Research Foundation is the largest organisation for donor-funded ME/CFS research funding in Germany. Our focus is on promoting biomedical research by funding research projects, networking researchers and creating transparency about the state of research.

We work closely together with the patient organisations for ME/CFS and Long-COVID, who have long been committed to improving the situation. They are particularly active in the areas of public awareness, self-help for those affected and their families, further training for doctors and political commitment:
• German Association for ME/CSF: www.mecfs.de/
• Long Covid Germany: www.longcoviddeutschland.org/
• Fatigatio e.V. - Federal Association ME/CFS: www.fatigatio.de/

We also co-operate with other foundations (charities) in the field of ME/CFS research, e.g:
- non-profit Weidenhammer Zöbele Foundation
- Lost Voices Foundation: www.lost-voices-stiftung.org/
• We&ME Foundation (Austria): www.weandmecfs.org
• Open Medicine Foundation (USA): www.omf.ngo

In addition, there are a large number of ME/CFS initiativeswhich are primarily committed to raising public and political awareness. These are generally more informally organised and also provide important support alongside the patient organisations.

Formally, we are non-profit limited liability company ("gGmbH" in German). This is a more flexible legal form for our purposes than the foundation under civil law. However, with regard to the purpose of our activities, our ability to make donations and our non-profit status, there are no significant differences to a foundation.  Many other so-called "foundations" in Germany are also formally not foundations under civil law.

Non-profit law and our statutes restrict the use of funds to the exclusively non-profit purposes defined in the statutes: "Promotion of science and research as well as public health and public health care ..." with a focus on ME/CFS. All donations to the gGmbH may be used exclusively for these purposes.

Informationen on the state of research on ME/CFS

Compared to other, similarly common diseases, medical research into ME/CFS is around 40 years old (source 1). There is no specific biomarker and the development of the disease (pathogenesis) is unclear. Until 2021, all German research into ME/CFS was privately funded. Neither established research funding organisations such as the German Research Foundation (DFG - Deutsche Forschungsgemeinschaft)nor pharmaceutical companies have so far supported any significant ME/CFS research in Germany. Internationally, the situation is comparably bad.

There are currently only two ME/CFS outpatient clinics in Germany (Berlin and Munich). Essential research structures have only been created since 2021/22, but there are still too few of them (see "What specific research structures for ME/CFS exist in Germany?"). The main reasons for the lack of research are a lack of funding and therefore a lack of interest from researchers (both in basic and clinical research), a lack of interest from the pharmaceutical industry due to a lack of biomarkers and basic research, low awareness of the disease and therefore a lack of political attention - a "vicious circle" of inactivity.

Public funding was only initiated in light of the pandemic and the Long COVID problem. From 2021 to 2023, a total of EUR 15 million has been channelled into ME/CFS research by the BMBF (Federal Ministry of Education and Research) and 4 federal states (source 2). In Sept.23, the BMBF announced ME/CFS research funding of a further EUR 15 million for 2024-26 (source 3). Overall, the number of ongoing ME/CFS research projects has increased significantly since the start of public funding in 2022 (starting from a very low level). In particular, more clinical research has taken place since then. This is much more expensive per project than basic research. 

For comparison: in the Netherlands, public funding of EUR 3m p.a. for ME/CFS research has already been decided in 2021 (source 4). Extrapolated to Germany, this would correspond to a public research budget of EUR 30 million p.a. (the funds mentioned above correspond to approx. EUR 8-10 million p.a.). Patient organisations have published a "National action plan for ME/CFS and post-COVID syndrome" calculated a requirement of EUR 65 p.a. (EUR 130m over 24 months) (source 4). A sensible order of magnitude should be in this range, i.e. EUR 30-65m p.a.

Sources:

1: Article by the German Society for ME/CFS on the backlog of ME/CFS research compared to other, comparably common diseases: https://www.mecfs.de/die-me-cfs-forschung-ist-ca-40-jahre-im-rueckstand/

2: Total public ME/CFS research funding by the BMBF and the 4 federal states of Bavaria, Thuringia, Baden-Württemberg, Lower Saxony, as of August 2023 (analysis by the ME/CFS Research Foundation, which corresponds to the figures mentioned by Prof. Uta Behrends at the ME/CFS Symposium in May 2023, cf. the presentations by U. Behrends and J. Heydecke) http://mecfs-research.org/mecfs-symposium2023/).

3: See our commentary on the BMBF announcement: https://mecfs-research.org/bmbf-researchfunding-sep23/ (incl. links to the announcement and call for entries)

3. recommendation of the Dutch Health Council: https://www.gezondheidsraad.nl/documenten/adviezen/2018/03/19/me-cvs

4: The German Society for ME/CFS and Long COVID Germany have drawn up a "National Action Plan for ME/CFS and Post-COVID Syndrome", which is aimed at the German government: https://www.mecfs.de/aktionsplan/ and https://longcoviddeutschland.org/aktionsplan/

The few ME/CFS research projects in Germany were only privately funded for a long time. Since 2020/21, the COVID 19 pandemic and the subsequent wave of post-COVID patients have generated more attention for post-infectious, chronic disease patterns - in medicine and also in politics and the general public. Thus, since 2021, there has finally also been public research funding - at federal and state level (so far in 4 of 16 federal states). In particular, funding from the BMBF (Federal Ministry of Education and Research) and the BMG (Federal Ministry of Health), in conjunction with funding from Bavaria, has made it possible to create the following basic research structures and alliances:

  • The ME/CFS Register and the ME/CFS Biobank in which patients with a complete clinical diagnosis are recorded and from which other research projects can select suitable cohorts ( here);
  • The collaborative research network IMMME (Immune Mechanisms of ME/CFS) in which researchers from several universities and research centres are conducting basic research (read more here and here);
  • The NKSG (National Clinical Study Group), which establishes and networks important structures and projects in clinical research (biomarkers, diagnostics, therapy studies) (read more here and here and here);
  • The BAYNET FOR ME/CFS (Bavarian Network for ME/CFS Research), in which all 6 Bavarian university hospitals were united for the first time in a joint project on ME/CFS care and diagnostics research (read more here and here);
  • The project ME/CFS Kids Bavaria of the MRI Chronic Fatigue Centre (MCFC), in which various partners cooperate alongside the MRI TUM to improve the care of adolescents and young adults with ME/CFS (read more here).

In February 2024, the ME/CFS Research Foundation launched the ME/CFS Research Register (beta) – a systematic overview of the research landscape on ME/CFS (myalgic encephalomyelitis / chronic fatigue syndrome). The register provides an overview of the most important research work - from current projects, publications and working groups to scientific events such as conferences.

The scope of the registry (currently Germany and Austria are covered) will be expanded to include other countries in the future. In addition, the ME/CFS Research Foundation will regularly publish analyses and reports on ME/CFS research.

All information and links: https://mecfs-research.org/en/mrr/

Go directly to the ME/CFS Research Register (beta): https://mrr.mecfsresearch.org/

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