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) . 

We invest 100% of the donations (after Transaction costs) into biomedical research on ME/CFS (incl. post-COVID). Because our administrative costs are fully covered by dedicated donations.

How can you guarantee the use of the foundation's funds for ME/CFS research?

Our statutes restrict the use of funds to the charitable purposes "Promotion of science and research as well as public health and public health care ..." with a focus on ME/CFS. All donations received by the gGmbH may be used exclusively for these purposes.

And like every other foundation, we are also subject to regular monitoring by the tax office. In case of violations of the non-profit law or our statutes, the tax office would revoke our non-profit status. The tax office also checks that our administrative costs do not exceed a "reasonable amount" (typically 10-20% of donations are accepted). Regardless of this, our administrative costs are fully covered by dedicated funds. Thus, no (!) administrative costs are covered by our donation income and we can guarantee that 100% of your donation goes to ME/CFS research (see above).

As with foundations under civil law, no withdrawals of assets by the shareholder are permitted in the case of a gGmbH (a German form of non profit limited liability company). In the course of establishing the ME/CFS Research Foundation gGmbH, the share capital of €25,000 was paid in by the founder and managing partner Joerg Heydecke. Formally, the gGmbH therefore "belongs" to Joerg Heydecke. However, unlike a regular GmbH (limited liability company), gGmbH shareholders cannot freely dispose of the funds of the gGmbH. All income (donations, interest, other income) may only be used within the framework of the statutes and for non-profit purposes.

A sale of the gGmbH would be formally possible, but only at the nominal value of the share capital (€25,000 in this case). Even in the event of a liquidation (dissolution) of the gGmbH, all funds in excess of the nominal capital must be allocated to a comparable non-profit purpose. These strict regulations ensure that shareholders of a gGmbH cannot obtain a return from the gGmbH either through distributions or through a sale.

For more information, please check e.g. Wikipedia (German language) and in the legal texts linked there.

However, the most important reason for using our funds exclusively for ME/CFS research is the motivation of our founder and managing partner Joerg Heydecke. As a relative of a ME/CFS patient, his goal is to advance biomedical research into ME/CFS in order to enable better diagnostics and ultimately therapies in the future. To this end, he founded the ME/CFS Research Foundation 2022 and has been investing a lot of money, time and energy in this project ever since.

Plese see our News & Events section for some of the results of the ME/CFS Research Foundation Team's work so far. We do appreciate your support!

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“). Ein 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.

Zu seiner Motivation sagt Jörg Heydecke: “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.“

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.

The ME/CFS Research Foundation is the largest organisation for donor-funded ME/CFS research 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.

The ME/CFS Research Foundation has only low administrative costs, which are fully financed by the founder Joerg Heydecke. This means that we can guarantee that 100% of your donation will go towards funding biomedical ME/CFS research.

We regularly add to the list of FAQs. If you have a question that has not yet been asked or answered adequately here, please simply send us an e-mail:  FAQ@mecfs-research.org   We will then comment on your question as soon as possible.