Resources for researchers

This article provides an international overview of funding opportunities, biobanks, and networks for researchers interested in studying the illness myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

The National Institutes of Health in the United States and the Horizon Europe program in Europe provide several funding options, particularly for large and international collaborations. Small pilot studies can receive financial support from patient organizations such as Solve ME/CFS Initiative and ME Research UK. These charities fund multiple ME/CFS research projects from around the world and their grants frequently act as a stepping stone to bigger grants. We also provide an overview of biobanks where researchers can obtain samples and conferences and associations for ME/CFS researchers that can provide contacts for future collaborations.

This overview will be regularly updated. If you are aware of additional funding opportunities (or have a comment), you can contact us here.

Last updated on 13 January 2023.

Table of contents

The National Institutes of Health

The NIH is the foremost US federal agency that funds biomedical and public health research. In 2021 it oversees a budget of approximately 43 billion dollars. The NIH issues hundreds of funding opportunity announcements where scientists can apply for financial support for their research proposals. Currently, two program announcements solicit studies on “the etiology, diagnosis, pathophysiology and manifestations” of ME/CFS. For both programs, foreign (non-US) institutions and researchers are eligible to apply.

  • The first funding opportunity, called PAR-20-165, is a standard R01 grant for research on ME/CFS. PAR-20-165 calls for research proposals “that address gaps in the understanding of the environmental and biological risk factors, the determinants of heterogeneity among individuals with ME/CFS.” Reviewers will consider how the proposed research addresses novel and innovative research that will break new ground or extend previous discoveries toward new directions. The announcement started on 13 April 2020 and runs for three years until 06 March 2023. Although there is no specific limit to the budget requested, projects with direct costs of $500.000 or more in any year require extra permissions. The maximum duration of the research project is 5 years.
  • The second program announcement for ME/CFS called PAR-20-168 is very similar in scope but focuses on new, exploratory, and developmental research projects. It is an R21 grant that provides funding for pilot and feasibility studies or the early stages of a project. For this grant, no preliminary data is required but the budget is limited to a maximum budget of $275,000 and two years of funding. PAR-20-168 is intended to support innovative research on new technologies, high-risk experiments, or a novel avenue of investigation that could lead to a breakthrough in ME/CFS research. This program announcement started on 13 April 2020 and also runs for three years until 08 May 2023.

Research proposals are usually submitted electronically. The NIH works with three application cycles per year, with information on due dates provided here. Applications are evaluated by the NIH’s dual peer review system. Reviewers consider five criteria – Significance, Investigators, Innovation, Approach and Environment – and score the scientific technical merit of proposals on a 1-9 scale. The peer review of applications from foreign institutions have two extra criteria. Reviewers assess whether the project presents special opportunities for furthering research programs through the use of unusual talent, resources, populations, or environmental conditions in other countries that are not readily available in the US or that augment existing US resources. In addition, peer review assesses whether the proposed project has the potential for significantly advancing the health sciences in the United States. An example of a successful NIH grant to ME/CFS researchers outside the US is the Cure ME team that has established an ME/CFS biobank in the UK. 

ME/CFS research proposals can also receive funding under other NIH calls. Studies that focus on establishing new biomarkers, for example, might more easily fit in the call PAR-19-315: “Discovery of Biomarkers and Biomarker Signatures for Neurological and Neuromuscular Disorders”,  issued by the National Institute of Neurological Disorders and Stroke (NINDS).

ME/CFS researchers interested in applying for an NIH grant can contact Program Director Vicky Whittemore.

Horizon Europe

Horizon Europe is the big research and innovation program of the European Union (EU) for the years 2021-2027. In June, the call for proposals of the first work program was announced. For both 2021 and 2022, Horizon Europe will distribute approximately 1 billion euro to health research. Although calls for EU grants normally target multi-beneficiary consortia made up of participants from different countries, we found no strict requirement for applicants of Horizon Europe grants to form a consortium or international collaboration. Researchers from the US or EU associated countries such as Norway and the UK can also receive funding from these calls.

Three calls in the first Horizon Europe work program seem particularly relevant for ME/CFS researchers.

  • The first call is named “Personalized blueprint of chronic inflammation in health-to-disease transition.” It aims to support “data-driven, personalised approaches to identify the drivers of chronic inflammation that may determine the transition from health to pre-symptomatic and early stages of chronic diseases.” This call for proposals starts on 06 October 2021 and ends on 21 April 2022. A budget of 50 million euros has been reserved with which the EU Commission aims to fund 7 projects of approximately 7 million euros each.
  • The second is called “Personalized medicine and infectious diseases: understanding the individual host response to viruses (e.g. SARS-CoV-2).” Submissions are expected to “characterize the host response and host-pathogen interaction to a virus (or viruses) at the level of genetic patterns, physiological mechanisms and molecular pathways involving different organs and systems to identify factors that predispose to different clinical symptoms, different progression of the viral disease and different clinical outcomes.” Proposals should also “include patient follow-up to identify conditions (including long-term ones) that may appear after the patient has recovered from the viral disease.” The opening date for this call was 22 June 2021. The deadline to submit proposals is short: 21 September 2021. Researchers, therefore, have little time left to submit a proposal. The Commission aims to fund 9 projects of approximately 7 million euros each with this grant.
  • The third funding opportunity is called “Pre-clinical development of the next generation of immunotherapies for diseases or disorders with unmet medical needs.” It focuses on pre-clinical to first-in-human development of new immunotherapies for disorders with a high disease burden and unmet medical needs. Since the immune system is thought to play an important role in ME/CFS and long covid, several companies have shown an interest in developing new immunomodulatory therapies for these conditions (example here, here, and here). Such research may fall under the scope of this call. This call for proposals starts on 06 October 2021. It has a two-stage deadline model with the first deadline on 01 February 2022. The Commission will fund 10 projects of 7 million euros each with this grant.

More information about Horizon Europe can be found here. We advise researchers interested in applying for Horizon Europe grants to contact their National Contact Points as these provide guidance, practical information, and assistance on all aspects of participation in Horizon Europe.

The European ME Coalition (EMEC) is currently working to provide better funding opportunities for ME/CFS researchers in Horizon Europe. Representatives of the European Commission announced plans to conduct a scoping study. This will investigate the permanent inclusion of a special category of under-researched illnesses like ME/CFS in future work programs of Horizon Europe.

The European Research Council

The European Research Council (ERC) is a funding organization for frontier research. It aims to stimulate scientific excellence in Europe by funding the very best, creative researchers and supporting their innovative ideas. Excellence is the sole criterion for selection. ERC grants are highly competitive with an overall acceptance rate of 12%.

The ERC is part of the Excellence Science Pillar of Horizon Europe and represents 17% of the overall Horizon Europe budget or €16 billion for the period 2021 to 2027. In 2021 €1.9 billion will be made available to allow some 1,000 top researchers to pursue frontier research.

Research projects funded by the ERC can last up to five years and can cover frontier research in any scientific domain, including health. Researchers from anywhere in the world can apply for ERC grants provided the research they undertake will be carried out in an EU Member State or Associated Country.

There are four types of ERC grants:

  • Starting Grant: provides support for Principal Investigators with 2-7 years of experience since completion of their Ph.D., who are starting their independent research team or program. This grant provides funding up to €1.5 million for a period of 5 years.
  • Consolidator Grant: provides support for Principal Investigators with 7-12 years of experience since completion of their Ph.D. who are consolidating their independent research team or program. This grant provides funding up to €2 million for a period of 5 years.
  • Advanced Grant: provides support for Principal Investigators who are established research leaders with a recognized track record of research achievements. This grant provides funding up to €2.5 million for a period of 5 years.
  • Synergy Grant: provides support for a small group of two to four Principal Investigators to jointly address ambitious research problems that could not be addressed by the individual Principal Investigators alone. Provides funding up to €10 million for a period of 6 years.

The latest ERC Work Program can be found here.

Solve ME/CFS Initiative

The Solve ME/CFS Initiative (Solve ME) is one of the oldest and largest ME/CFS organizations in the US. Its Ramsay Grant Program, named after the ME/CFS pioneer Dr. Melvin Ramsay, funds research projects of scientists all over the world. It has three main objectives: attract new researchers to the field, facilitate applications for larger grants based on promising pilot data and add to the cumulative scientific knowledge on ME/CFS.

Solve ME funds research projects ranging from $35,000 to 55,000 for a one-year period, with the possibility of renewal for projects with promising results. These projects often act as a stepping stone to larger NIH grants. An example is the research by Jarred Younger at the University of Alabama. Through the Ramsay Grant Program, Younger was able to collect pilot data for his brain imaging study of ME/CFS patients that eventually resulted in an NIH grant. An overview of projects funded by Solve ME can be viewed here.

Solve ME also maintains the You + ME Registry, a large collection of patient-reported data and biological samples from people living with ME/CFS or Long Covid. To help analyze this rich source of information Solve ME provides Stupski Awards. These are data-only grants that provide financial support to analyze the data in the You + ME Registry. They have a maximum budget of $10,000 for a 6-month period. These grants are in honor of Joyce Stupski, who provided generous support to Solve ME.

In their proposal to Solve ME, researchers need to provide a technical abstract, a detailed research plan, a budget and justification, and information on facilities. More information on applying for the Ramsay research program can be found here and here. After submission, applications are submitted to a rigorous, double-blinded peer-review process. Each application receives two independent reviews and proposals are ranked numerically on a scale based on the relevance and significance of the work, the innovation aspect of the proposal and, the feasibility and soundness of the approach.

The 2022 Ramsey Grant program has been announced. Solve M.E. is accepting applications to study ME/CFS and Long Covid from 9 April – 6 June, 2022. This year, the focus will be on applications for projects that investigate the pathological mechanisms behind the development of Long COVID in formerly healthy people. Collaborative proposals (involving 2 or more research groups) are encouraged.

Any questions regarding the Ramsay Award Program can be directed to Kate Mudie, Solve ME’s registry research manager.

ME Research UK

ME Research UK (MERUK) is one of the largest funders of ME/CFS research in Europe. It focuses on biomedical studies that help to unravel the biology of ME/CFS or point toward possible treatments. Much like Solve ME in the US, MERUK mostly provides funding for pilot studies or seed-corn projects that could lead to larger-scale research supported by a government funding agency.

Since its foundation, MERUK  has funded more than 50 studies and invested more than 2.2 million pounds in ME/CFS research. It provides funding to researchers worldwide and has currently 12 ongoing projects in the US, UK, Europe, and Australia. An overview of studies funded by MERUK can be viewed here.

Two application calls are issued by MERUK per year. The deadline for submissions for the current call is 5 p.m. BST on Friday 16 September 2022. More details on how to apply are provided here. Although the organization does not provide a target budget for its grants, based on previous projects researchers could aim for projects costing somewhere between 10.000  and 100.000 pounds yearly.

In addition to its usual grants, MERUK also funds Ph.D. studentships for a 3-year period. These studentships are open to institutions in the UK and worldwide. Application for an award should be made by a suitably qualified Ph.D. supervisor (not a student) at the host institution using the Ph.D. Funding Application Form. Applications can be submitted at any time. More information on applying for Ph.D. funding can be found here.

Applications to MERUK are sent for external review to experts in the field and then assessed by MERUK’s Science Committee, which will make a recommendation on funding. The final decision, however, is made by their Board of Charity Trustees.

For further information, researchers can contact MERUK’s Research Director, Dr. David Newton.

Other patient charities

Several other patient organizations support ME/CFS research even though they do not systematically write out calls for applications such as MERUK and Solve ME. These charities also tend to support researcher groups in their home country rather than internationally. Nonetheless, it could be worth contacting them in case you are looking for support for your ME/CFS research.

  • Action for ME is a British charity that funds research through its Clare Francis Research Fund. Funding applications are put through a five-stage funding assessment process, overseen by a Research Panel with input from a Scientific Advisory Panel and people with ME/CFS. Action for ME is currently funding studentships at Cardiff University and the University of Edinburgh. In the past, it has financially supported the research team of Julia Newton at Newcastle University. More information about Action for ME’s research funding is available here.
  • The ME Association is a British patient organization that funds research through the Ramsay Research Fund named after pioneer Melvin Ramsay. It invests in biomedical research studies and infrastructure projects that will help lead to a better understanding of underlying disease mechanisms, the development of reliable diagnostic tests for use in clinics, or safe and effective forms of treatment. In the past 25 years, ME Association has invested over £1million in ME/CFS research. A list of studies that were supported by the Ramsay Research Fund can be viewed here. Ongoing research projects that receive support from the fund are listed here. Researchers interested in applying are encouraged to first contact Dr. Charles Shepherd, Hon. Medical Adviser to the ME Association for an initial informal discussion. Grant applications should use the research proposition form. Decisions are based on the guidelines produced by the Association of Medical Research Charities and will normally include both an internal and external peer review of all formal grant applications.
  • Invest in ME Research (IiMER) is another UK charity that funds and facilitates biomedical research on ME/CFS. They are well-known for organizing annual international Conferences and research Colloquiums to bring together ME/CFS researchers, clinicians, and patient groups. The charity is currently supporting ME/CFS research at the Quadram Institute and the University of East Anglia where scientists are studying the role of the intestinal microbiota in the pathophysiology of ME/CFS. Invest in ME welcomes applications for grants for projects of 6 months to 3 years duration. Applications are accepted at all times and will be peer-reviewed by external reviewers. While funding applications are considered from outside of the UK, IiMER prefers to use collaborations with UK and European organizations and researchers. IiMER also initiated and facilitated the formation of EMERG – The European ME Research Group – a collaboration of researchers and institutes within Europe. The charity has a preference for involving EMERG members in all research funded or supported. More information on how to apply for Invest in ME Research funding is available here.
  • Open Medicine Foundation (OMF) leads the largest worldwide nonprofit effort in studying the biological basis of ME/CFS. It has established 5 research centers (at Stanford University, Harvard University, Uppsala University, the University of Melbourne, and Université de Montréal) that are devoted to researching and finding a cure for ME/CFS. Over the years OMF has raised over 28 million dollars for ME/CFS research and assembled a scientific advisory board that includes two Nobel laureates and six National Academy of Sciences members. Although it doesn’t offer grants and funding opportunities, it does provides researchers access to data obtained in OMF-funded studies. More information about the OMF ME/CFS data center can be found here.
  • Emerge Australia is an Australian ME/CFS patient organization. The charity is currently involved in setting up an Australian ME/CFS biobank and patient registry, a project funded by the Mason Foundation. Emerge is also part of the ANCHOR Study, a study funded by the Medical Research Future Fund to investigate the quality of life and economic impact of ME/CFS. In a collaboration with OMF, Emerge has established Open Medicine Foundation Australia (OMF Australia), an Australian foundation set up to support biomedical research through the establishment of a new ME/CFS research collaboration in Australia. The Australian collaboration is directed by Christopher Armstrong, Ph.D.
  • Simmaron Research is another US non-profit that supports ME/CFS research. Located in Nevada, Simmaron builds on the clinical experience of Daniel Peterson, one of the physicians whose work contributed to the recognition of the syndrome in the 1980s. An overview of projects supported by Simmaron Research can be found here.

Government research

Most governments have institutions that fund health research. We only list the largest national organizations that provided funding specifically for ME/CFS research.

  • In Australia, the National Health and Medical Research Council (NHMRC) allocated $3 million in a Targeted Call for Research (TRC) in 2020. The three successful applications can be viewed here. The TCR was a key recommendation of the ME/CFS Advisory Committee set up by the NHMRC, whose report was published in April 2019.
  • In 2020 in the Netherlands, the Organization for Health Research and Development (ZonMw) issued an ME/CFS research program for 10 years with a budget of 28,5 million euros. The program focuses on biomedical research and encourages international collaboration. The main applicant/project leader must be employed by a Dutch organization, but foreign researchers can participate in a project. Detailed instructions on how to apply for funding can be found here (in Dutch). The first call closed on April 21, 2022 and received 25 project proposals. A new round of grants will be available at the end of 2022.  
  • In the UK, the National Institute for Health Research (NIHR) and Medical Research Council (MRC) co-funded DecodeME, the largest genetic study on ME/CFS, in 2020. DecodeME aims to analyze samples from 20,000 people with ME/CFS to search for genetic differences that may increase the risk of developing the illness. The study is being led by Professor Chris Ponting, from the University of Edinburgh.
  • In Germany, the Federal Ministry of Education and Research (BMBF) has issued a targeted call for research on poorly understood conditions with a large disease burden and insufficient treatment options. The call is intended to stimulate research on illnesses such as ME/CFS.

Private philanthropy

Private research organizations such as the Welcome Trust and Linbury Trust in the UK, the Mason Foundation, and Stafford Fox Medical Research Foundation in Australia have provided funding for ME/CFS research in the past.

The TEMPI Stiftung is an Austrian foundation that aims to support research projects internationally, with a specific focus on ME/CFS and related illnesses.

Networks

  • The International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFS/ME) is the international organization for researchers studying ME/CFS. It regularly holds conferences and publishes the quarterly scientific journal Fatigue: Biomedicine, Health & Behavior in partnership with Talyor & Francis. Fred Friedberg, Associate Professor at Stony Brook University, is the current president of the IACFS/ME. You can contact the organization here.
  • The European Network on ME/CFS (EUROMENE) is a collaboration of ME/CFS researchers in Europe. The project was funded by the EU Framework Program Horizon 2020 with Cost Action 15111. EU funding ended in 2020 and it is unclear if the network and its activities will proceed in its current form.
  • The European ME Research Group (EMERG) is another European group of ME/CFS researchers initiated by the UK charity Invest in ME Research. More info about EMERG can be found here.
  • In Canada, there is the Interdisciplinary Canadian Collaborative Myalgic Encephalomyelitis (ICanCME) Research Network that stimulates research on ME/CFS. The network is divided into multiple working groups and has Professor Alain Moreau of the Université de Montréal as director. More information about ICANCME can be found here.
  • US ME/CFS Clinician Coalition was formed in 2018 by a group of American ME/CFS expert clinicians. Their goal is to improve clinical care for ME/CFS patients by promoting best clinical practices and by providing medical education. More information about the US ME/CFS Clinician Coalition can be found here.
  • Doctors with M.E. is a global association of medical practitioners, scientists, and researchers, bringing together leading experts on ME/CFS. Doctors with M.E is the first global professional association led by medics and experts who suffer from ME themselves. More information about the organization can be found here.

Biobanks

  • The CureME biobank: The CureME research group is based at the London School of Hygiene & Tropical Medicine. It created the first UK ME/CFS Biobank (UKMEB) that provides biological samples to researchers across the globe. It has collected over 30,000 aliquots of blood from patients with ME/CFS and multiple sclerosis as well as healthy controls. ME/CFS participants in the biobank have been diagnosed by physicians and are compliant with the Fukuda and/or Canadian Consensus Criteria. Case definition compliance is also available for four other commonly-used criteria and patients can be stratified in having mild/moderate or severe (home/bed-bound) ME/CFS. Researchers interested in accessing samples from this biobank can find more information about applying here.
  • The You + ME registry is a US collection of patient-reported data and biological samples (including blood) from people living with ME/CFS, Long Covid, and healthy volunteers. The registry is created and founded by the charity Solve ME/CFS Initiative (Solve ME). Researchers who want to use the data, biospecimens, or both can submit an application to Solve ME. The application will be reviewed by the Registry Community Advisory Committee. More information can be found here.
  • UK Biobank is the main UK biomedical database containing genetic and health information of half a million UK citizens. It also includes data from approximately 2000 participants who report having been diagnosed with ME/CFS. An example of an analysis of ME/CFS participants in the UK biobank can be found here.
  • Australian biobank (in progress): In 2019 the Mason Foundation announced funding to set up a ME/CFS biobank and registry. This will be led by the Australian charity Emerge Australia, partnering with Solve ME/CFS Initiative (Solve ME) in the US, and the UK ME Biobank (UKMEB). The project will make use of existing Australian Red Cross Lifeblood resources, and will also benefit from the infrastructure of the UKMEB and resources being developed by Solve ME. The biobank will store blood samples of ME/CFS patients and matched healthy people. More information about this project and its participating institutions involved can be found here.

Conferences

  • IIMEC: the UK charity Invest in ME organizes an International ME conference (IIMEC) for researchers, clinicians, and patients. It is held annually in London, UK. In addition, the charity organizes a Biomedical Research into ME Colloquium (BRMEC) for researchers. More information about IIMEC and BRMEC can be found here.
  • IACFS/ME conference: the International Association for chronic fatigue syndrome/myalgic encephalomyelitis (IACFS/ME) organizes a biennial Research and Clinical Conference. It is a medical conference for researchers, clinicians, and patients interested in ME/CFS, fibromyalgia, and co-morbid illnesses (including orthostatic intolerance, sleep dysfunction, irritable bowel syndrome, and other conditions associated with acute or chronic fatigue). More information about IACFS/ME conferences can be found here.
  • OMF conference: The Open Medicine Foundation (OMF) sponsors a yearly Community Symposium on the Molecular Basis of ME/CFS. It is held at Stanford University, California, US. Prior to the Community Symposium, scientists from all over the world participate in a Working Group. This meeting behind closed doors gives scientists the opportunity to brainstorm and discuss new ideas. 
  • Emerge Australia conference: the first Emerge Australia International Research Symposium was held in 2019 in Australia. The event was funded by the Australian Government’s Department of Health and introduced by the Minister for Health, Hon Greg Hunt MP.  The aim of the conference is to facilitate international research collaboration and encourage biomedical research into ME/CFS. The next symposium will take place in 2022.