ME and CFS Research

Government funded research

ME research has been under-funded or not funded in many cases for 30 years in Ireland, the UK, Europe and the North America and Asia. Many research projects into the biological causes and biological dysfunctions and abnormalities in ME have been blocked over the years by certain parties. Yet, ME has imposed and continues to impose large losses on economies - in the USA it is estimated to cost $100 billion per year, in Ireland 2.54 billion euros per year, in Northern Ireland £893 million per year, in Britain £30 billion per year (See 'Why set up a clinic ?' section on this web site). These are huge losses, yet ME receives far less funding than other similar ilnesses.

NIH Funding in USA

"And per person afflicted? According to the Fair Allocations in Research Foundation in 2013
- Cancer gets $5,600 per patient per year
- Alzheimer’s gets $503 per patient per year
- Hepatitis B gets $45 per patient per year
- MS gets $115 per patient per year
- Autism gets $192 per patient per year
- Liver disease gets $632 per patient per year
- AIDS gets $3,000 per patient per year
- Depression gets $429 per patient per year
- ME / CFS gets $1.65 per patient per year

ME / CFS gets $5 million or less than $1.65 per patient based on 3 million Americans having ME / CFS. This is a tiny amount to spend on research. This is far too little and totally unacceptable. In the USA, the CFSAC recommends that $250 million be spent per year on research into ME / CFS. The following statement from CFSAC states this clearly:
"To facilitate the above goals, CFSAC recommends that the Secretary work with HHS agencies to ensure that total research funding is commensurate with the epidemiologic prevalence and economic burden imposed by this disease. Based on disease prevalence, equitable funding is estimated to be $250,000,000 per year."

See amounts spent on research for each illness, including ME/CFS from 2009 - 2013 at

NIH Funding Chart
Funding from 1987 - 2010. NIH funding relates to total NIH funding for all illnesses and is measured in millions of dollars
Funding for ME / CFS is measured in thousands of dollars

This shows a decline in funding for ME / CFS for several years. This is the main reason why private research funded by patients, carers, business people and private donors had to be carried out to find biomarkers as the NIH would not fund ME / CFS research.
Based on prevalence, suffering and societal costs, the funding for ME in the US is about 20 - 30 times smaller than it should be. For instance, Multiple Sclerosis (MS) prevalence is about half that of ME yet multiple sclerosis’ NIH  budget of $115 million is 22 times higher than that of ME. Asthma costs the US economy around $20 billion per year in economic losses, (ME costs $90 billion per year) yet asthma gets 40 times as much NIH funding as ME.

In 2015 - 2016, there are indications that the HHS, NIH and CFSAC in the USA are not keeping some promises and commitments made to patients in 2014 and 2015. This is outlined in a news article by patient advocate Cort Johnson -

By calling ME a mental illness, psychiatrists have undermined the credibility of ME and this has affected it's research funding from governments. It has also facilitated fraud and misappropriation of funds. Certain individuals in the NIH and CDC played a part in blocking funding for CFS research during the 1990's, as they both thought it was not worth researching. From fiscal 1995 through fiscal 1997, some $5.8 million that the CDC told Congress had been spent on CFS research actually went to other activities. Certain members in the CDC tried to cover this up at the time. There were no criminal prosecutions and court cases, and no one was fired or resigned, which was unusual when one considers the seriousness of the crimes and the fact that Americans were dying of the illness. Furthermore, Dr. Byron Hyde the famous Canadian doctor stated in his booklet ( A Brief History of Myalgic Encephalomyelitis ) that Dr. Straus (NIH) may have been responsible for misdirecting or misappropriating the $34 million designated by the US government for ME (CFS) research in the late 1980s' and early 1990's. The $34 million was spent on researching other illnesses. Thats $40 million in total which went missing from ME (CFS) research and was a huge loss to ME (CFS) research.

While the Medical Research Council (MRC) in Britain was found to have had psychiatric bias in it's funding for ME research for over 10 years according to the findings of the Gibson Report (UK House of Parliament) and scientists. In the case of the denial of research funding by governments and national health institutes and research institutes worldwide, it is estimated that certain psychiatrists have been responsible for denying $2 billion ($100 million x 20 years) in research funding into ME over 20 years. This $2 billion could have made a huge difference to scientific research and brought the world much closer to understanding the structure of causation of the illness and it's biological dynamics and led to the development of medical drugs to treat the illness.

Scientific publications to 31st December 2013, showed the following:
rheumatoid arthritis - 115,605 papers
type 2 diabetes - 102,729 papers
MS - 59,217 papers
CFS and ME - 6,310 papers

However, the disparity is even greater when only publications with ‘hard’ data are taken into account, such as clinical trials, evaluation studies, and observational studies
type 2 diabetes - 12,721
rheumatoid arthritis - 7,616
MS - 3,625
CFS and ME - 464

Research In Britain and USA

Very informative article about ME research in Britan since the early 1990's -

Solutions and Responses Required

The single biggest challenge in ME research projects worldwide is :

  1. Prioritization of Research Objectives, Methodologies, Funding and Direction

Other Challenges

  1. ME patients, and their carers and families and ME support groups and advocacy groups and ME researchers must get their own local and national politicians, governments, Health Ministers and government funding bodies, research funding bodies to properly fund research into ME and CFS in state research bodies and federal research bodies (USA, Germany, Australia), Universities, independent private research institutes.

  2. ME patients, and their carers and families and ME support groups and advocacy groups and ME researchers must get their own local and national politicians, governments and national research funding bodies to fund researchers and research teams in foreign countries. This will enable them to access foreign expertise, skill sets, experience, and technologies which may be more advanced in certain areas.

  3. ME patients, and their carers and families and ME support groups and advocacy groups and ME researchers must get big pharmaceutical companies and biotech companies to invest in ME and CFS research, especially research into the biological factors in ME and subgroups and new innovative treatments. Use orphan drug programmes and other such initiatives to speed up drug development and use in treating ME and CFS.

  4. ME patients, and their carers and families and ME support groups and advocacy groups and ME researchers must encourage University researchers to research ME in their own countries and foreign countries.

  5. ME patients, and their carers and families and ME support groups and advocacy groups and ME researchers must engage in public fund raising online and offline to raise funds for research.

  6. Prioritization of Research Objectives and Funding
    Government research funding could start at $100 per patient (72 euros, £60) and increase incrementally over time. This is a reasonable investment in research considering the high economic and social costs of the illness. This would give the following figures:
    Ireland: 3.3 million euros per year
    Britain: £37 million per year
    USA: $315 million per year
    European Union: 360 million euros per year

There is an urgent need for government funded research into ME / CFS in all developed countries. This would involve investing in people, people's health and well being, in people's recovery from illness, and in the productivity of people and accompanying social and economic inclusion of disabled people. Hundreds of billions of pounds / dollars have been wasted on bailing out bankers, bondholders, certain business people and financial institutions who were involved in gambling and legal and regulatory violations. It's time now to invest in people, the health and the productivity of the people. Make this part of the EU / US / Canadian / Australian / Chinese / Japanese / Asian economic stimulus packages to bring about economic recovery.

Many governments waste hundreds of millions of euros / dollars on wasteful spending, inefficiencies, pet projects which deliver no real, lasting economic and social benefits ; an example of this being The Waste List: 66 Crazy Ways That The U.S. Government Is Wasting Your Hard-Earned Money . Identifying waste and cutting back on waste and using the money which is saved to Invest in the health and well being of the people would deliver lasting economic and social benefits to a nation over the short term and long term.

New ME and CFS Databases and Biological Banks

Government Research Institutes and Funding Bodies
- Domestic and Foreign
ME patients, and their carers and families and ME support groups and advocacy groups and ME researchers could contact their own governments and ask them to fund research into ME in the following domestic and foreign research bodies.

Important Privately Funded Research into ME / CFS

ME patients, and their carers and families and ME support groups and advocacy groups and ME researchers could contact their own governments and ask them to fund private research into ME in the following domestic and foreign research bodies below.

  • Rituximab Trials
    • Norwegian Rituximab trials page. This research aims to follow up the work of Fluge and Mella involving use of Rituximab in ME patients in Norway. This has worldwide relevance.

    • Invest in ME in Britain has a good track record of funding excellent scientific research into ME/CFS. Now they are funding a Rituximab trial in Britain which will investigate how this drug brings about improvements and recoveries in some cases, and also investigate the B cell abnormalities and autoimmunity which are indicated in ME / CFS and in Rituximab usage for different human illnesses.

  • Open Medicine Foundation will be carrying out intensive genetic tests, molecular tests, immune system subset tests, infections tests mitochondria and cellular tests, and neurological tests to establish the main factors involved in the illness and the subgroups, and novel new ways to treat them. The most comprehensive study ever undertaken. Their research team has several highly distinguished scientists, including two Nobel prize winners. The initiative is called 'The End ME/CFS Project'.
  • The Spanish study into Natural Killer cell biomarkers
    This involves some of Europe's leading scientific researchers into AIDS, Immunology, ME, CFS and viral illneses. The study is to confirm and verify a previous study into NK cell biomarkers. Its an important study and will be used for ME & CFS diagnostics and treatments in future. In 2016, this research requires 18,000 euros in funding. Donations are accepted from individuals, groups, private and state organisations, and businesses -
  • Dr. W. Ian Lipkin of Columbia University has carried out a few research projects into ME/CFS. He is currently looking for funding for research into the Microbiome in ME/CFS. Over 70% of the immune system is located in the intestines and this research will investigate this factor in ME/CFS patients and controls.
  • Researching new tools for diagnosing Chronic Fatigue Syndrome and ME. Crowdfunding organized by ASSSEM to support the IrsiCaixa research project in Spain whose objective is to define new tools for diagnosing ME/CFS. These researchers have a strong international reputation in AIDS, autoimmune and immune system research, and have identified important immune system biomarkers in ME/CFS patients in the past.
  • Simmaron Research is based in Nevada in the USA and is one of the top ME/CFS research institutes in the world. It has excellent scientific researchers and medical doctors with over 20 years of experience in ME/CFS and collaborates with other researchers and institutes in other American states and in other countries on several projects.
  • The Open Medicine Institute. This is one of the leading ME/CFS research institutes in the USA. It carries out multiple tests of different body parts including immune system, mitochondria, glands, genes, infection by pathogens, gut dysfunction, spinal fluids, brain and neurological dysfunctions in individual research trials, providing vast amounts of data in each trial. This is helping to refine diagnostics and treatments.
  • Chronic Fatigue Initiative. This supports leading edge research into ME/CFS in North America. Participating institutions include the Center for Infection and Immunity at Columbia University, Harvard School of Public Health, Harvard Medical School, Duke University, NewYork-Presbyterian/Columbia University Medical Center, Brigham & Women’s Hospital, Massachusetts General Hospital, University of Miami and University of Utah.
  • The CFS Research Foundation has funded some very immoviative research into ME/CFS. These have provided important insights into the illness and a few biomarkers.
  • ME Research UK is well known in Britain for funding small, high quality research projects which have provided important scientific evidence that ME/CFS is a biological illness. Their continuing research is of strategic importance to ME/CFS patients.

The single biggest challenge in ME research projects worldwide is :

(i) Prioritization of Research Objectives, Methodologies, Funding and Direction

© Campaign for an Irish ME clinic. Charity number APP 21042.