CFS Research update

CFS research is very under-funded both in Europe and in the USA. In fact, in most European Union countries, the governments provide no funds for CFS research, and those European governments which do provide funding, provide very small amounts compared to other diseases and illnesses. 

American dimension
The fact that a large number of Americans suffer from CFS prompted the US Congress to fund research into CFS from 1989 onwards. The CFIDS Association of America places the total expenditure of the National Institutes of Health (NIH) on CFS research from 1990 through to 2003 at $78 million. For the same period, the expenditure of the Centers for Disease Control on CFS was $68 million. Compared to the research funding given to other illnesses, this is very small and inadequate for a complex disease such as CFS. Yet these figures are misleading, in the mid 1990's monies appropriated by the US Congress specifically for CFS research were illegally diverted into researching other illnesses by administrators within the CDC. This prompted a Department of Health investigation which found $12.9 million for CFS research  was unaccounted for or "went missing", this caused uproar and a scandal. Afterwards, the CFS research program was compensated for $12.9 million by the CDC, but the end result is that 4 years of valuable research time was lost. Over $140 million has supposedly "been spent on CFS research" by the NIH and CDC from1990 to 2003, but they made no progress with CFS during that time  -  they have not identified what causes the illness, there is no standard diagnosis, no adequate treatment. There is nothing to show for this $140 million. Many Americans, both patients and doctors are asking "What was this $140 million spent on ? " . Furthermore in 2004, the NIH and CDC refused funding and research facilities for genetic research into the causes of CFS.

The inadequate research funding is continuing to be a big problem in America. Let's look at the facts: in 2004, of the 175 disease research areas funded by the US National Institutes of Health (NIH) in 2004, CFS was 170th in funds awarded. The NIH gave temporal mandibular joint (TMJ) researchers 3 times as much money as CFS; Lyme's disease was given 5 times the money CFS was; Crohn's disease 9 times, anthrax research 17 times; asthma 50 times and AIDS 500 times as much  money as CFS. The NIH has several laboratories and whole institutes devoted to researching specific illnesses but none are devoted to researching CFS. In addition to this, the NIH reported funding 1,144 external research centers for fiscal year 2003 at a cost of $2.2 billion. They have funded 3 research centers for cystic fibrosis, 16 research centers for diabetes, 21 centers for AIDS research, 3 muscular dystrophy research centers, 2 autism research centers, 5 research centers that focus on mind-body research, 2 research centers for dietary supplements, but no research centres for CFS. This is outrageous considering that over 2.2 million Americans have CFS and many are dying prematurely of health complications caused by CFS.

No clear strategic plan for dealing with CFS
The US Department of Health, the NIH, the CDC have no clear strategic plan for dealing with CFS. Research funding is often wasted on investigating peripheral or secondary symptoms in CFS, which are unimportant and trivial, while research into the root causes of CFS has been refused funding. For example, in 2004, the NIH and CDC (USA) refused to finance vitally important genetic research into the main factors involved in CFS by Benjamin Natelson. This important research could shed light on the genetic factors underlying CFS, giving patients hope of gene-based cures for the illness in the near future. Thus CFS research has stagnated, and patients are forced to keep waiting and suffering (and dying). 

Some American Progress
CFS patient groups such as The National CFIDS Foundation in the USA (www.ncf-net.org), the American Association for CFS (www.aacfs.org)  and the CFIDS Association (www.cfids.org) have both made tremendous progress in research since 1998. They have financed private research which has and is continuing to investigate the root causes of CFS. Despite very limited funds, they have made more progress than the NIH and the CDC in the area of CFS research. The US government could have made more progress in CFS research if they had given the $140 million (mentioned above) to the National CFIDS Foundation, the American Association for CFS (www.aacfs.org) and the CFIDS Association, instead of giving it to the NIH and CDC.

European dimension
There has been a serious lack of funding for CFS research among European governments and the European Union. Individual European governments and the European Union also have no clear strategic plan for dealing with CFS.

Britain : The British government has wasted over £5 million on research for psychological causes for CFS when the scientific research from around the world has clearly shown and is continuing to show that CFS is a bio-medical or physical disease in much the same way Cancer, AIDS, Diabetes are physical diseases. In fact, CFS shares many similarities with AIDS, some Cancers and heart disease, and many CFS patients have died prematurely of opportunistic infections, certain Cancers and sudden heart attacks   -  see Memorial section  and  America's Biggest Cover-Up: 50 More Things Everyone Should Know About The Chronic Fatigue Syndrome Epidemic And Its Link To AIDS  by Neenyah Ostrom. The British government has wasted millions of pounds on Cognitive Behaviour Therapy (CBT) which has proven to be useless in treating CFS and has not delivered any recoveries from CFS. The British government was wrongly advised by psychologists that CFS is just a psychological illness. Since CFS is a "new" illness, and not much was known about it in the early 1990's, the British government was easily duped by unscrupulous psychologists hungry for research grants and money. 

When an illness is "new" and not much is known about it, and the research equipment and clinical diagnostic equipment are not advanced enough to view what is going on at the cellular and sub-cellular levels, and molecular levels, then it is customary to call such an illness a psychological illness, even though the illness may not be a psychological illness but a serious organic physical illness. For example, Multiple Sclerosis (MS) was originally called a psychological illness, Diabetes, Hypothyroidism, Alzheimer's disease, some Cancers, Lyme disease, Gilbert's syndrome, Hashimotos Encephalopathy, Chlamydia, Toxoplasmosis, several Autoimmune diseases, Coeliac disease and Addison's disease were all wrongly called psychological illnesses in the past, in the same way CFS is wrongly called a psychological illness. All of these diseases cause fatigue, and a lazy doctor or psychologist will always opt for the easy option of calling it a psychological illnesses. There are cases of doctors diagnosing depression in a patient when in fact the patient had cancer and died of cancer due to it not being diagnosed in time. People are dying of CFS and the health complications caused by CFS ; CFS is a disease, and scientific research has shown us an underlying disease process  (See Scientific Evidence section).

There is intense competition between scientists, doctors, PHD students, researchers and psychologists for government research grants and funding, and some psychologists used CFS as a ploy to increase funding for their own special areas and purposes, while ignoring the scientific evidence that CFS is a physical, bio-medical illness involving immune system break-down and serious viral and mycoplasma infections (See Scientific Evidence section). Psychology research has given us no insight into the causes of CFS, no diagnosis and no effective treatments, and no recoveries. But it has enriched certain psychologists in Britain who find mis-labelling diseases a very lucrative profession. The end result is that these psychologists have defrauded the British government and British taxpayer of £5 million. They have also wasted 12 years of valuable research time in Britain. This money, £5 million, should be refunded to CFS research in Britain, or given to organisations such as MERGE and the CFS Research Foundation in Britain which are carrying out high quality research into causes of CFS. 

British Progress
There has been a change in research direction in Britain since the publication of the Report of the Chief Medical Officer (Britain) in 2002. More funds are being pumped into research which investigates the physical root causes of CFS, and less money is being wasted on psychological research. CFS support organisations such as MERGE and the CFS Research Foundation in Britain have carried out valuable research into CFS since 2000. This has been financed by private donations. The British government if it wishes to make significant progress in researching an illness afflicting 200,000 Britons should extend annual research funding to MERGE and the CFS Research Foundation, to the tune £3 million a year, and discontinue all funding for wasteful psychological research into the illness. This would enable scientists to get to the root causes of CFS with greater speed and cost-efficiency.

As mentioned above there has to be a prioritisation of all government funding of CFS research and this prioritisation has to be based on sound scientific research from around the world. Prioritising research funding focuses research efforts on the root causes of CFS and avoids wasting money on researching secondary symptoms and "pet projects" such as psychological factors and CBT which have little or no value and are a complete waste of taxpayers money. Prioritising research funding imposes discipline, integrity and structure on the research process, and this can save valuable time and resources, and achieve results which may lead to a diagnostic tool for CFS and successful treatments.

A nation's health should be seen by governments as an investment not a cost ; indeed an investment which can reduce economic costs and increase overall economic revenues and productivity over the medium to long-term.

Hard Times
We have the ridiculous situation of seriously ill CFS patients being asked to fund research when they themselves are on the poverty line and receiving small disability payments. In most developed countries, bills are high, rents are high, house prices are high, mortgages are expensive, and the cost of living is high. Scientific studies now show that consumers are being ripped off in some European Union countries, including Ireland. We live in societies where the financially strong extract the maximum amount they can from everybody, including the ill, the sick, the poor and the elderly. Then the "fruits" of this system, billions of euros are hidden away in tax havens depriving governments and health-care systems of much needed funding. This system is destructive of society, government, healthcare, and social and economic progress. CFS patients are under a lot of financial pressure today. Most CFS patients live in dire poverty and debt, and they just cannot afford to pump money into research.

Research costs a lot of money  -  purchase or lease of new research equipment,  high-tech labs and storage facilities, highly trained staff, and the testing of large numbers of patients costs money, running into millions of euros on a yearly basis. Research into just one abnormality in CFS can cost from 50,000 - 500,000 euros (or dollars) each, and this abnormality may require several research studies in order to gain an understanding of what's going on, (multiply 50,000 - 500,000 euros or dollars by 8) and then there are other abnormalities in CFS all of which require a few research studies each. Research into the peripheral symptoms in CFS is a waste of money, we must focus on the root causes of CFS. At the moment the number of research studies into the root causes of CFS in humans stands at 35 or less a year (See Trends in CFS Research ) , which is a ridiculously low amount. Globally, a disease like CFS would require over 250 research studies a year into the root causes of CFS, not the peripheral symptoms of CFS, all of this adds up to approximately 100 million euros / dollars a year. The pennies of the poor and ill cannot be expected to fund such research or deliver promising research results. What we have today is a totally ridiculous situation, it's like expecting impoverished Cancer patients to privately fund Cancer research. Many CFS researchers have had to rely on small private donations from CFS support groups, CFS patients and other private donors. These small, limited private funds produce slow research, which is very limited and narrow in scope, typically lasting 6 months - 2 years, and adds little or nothing to our understanding of CFS. Thus CFS patients are condemned to wait another 20, 30, or even 40 years for a research breakthrough or a possible cure. The lack of funding is keeping CFS patients sick and in some cases it's killing them  -  see Memorial to CFS patients who have died

In addition to the lack of funding, important research findings  have not been followed up over the years - such as abnormal serotonin and cortisol activity. There is a lack of cooperation and coherency in the research field.The particular abnormalities found in CFS do not exist in isolation, as one abnormality will create, contribute to, or worsen another abnormality and so on, increasing the overall burden on the body. One example is glandular abnormalities which contribute to immune system abnormalities and vice versa, these immune system abnormalities lead on to chronic infections in various parts of the body and to further dysfunctions and abnormalities. Another example is mitochondria abnormalities which lead onto immune system abnormalities, muscular abnormalities and endocrine abnormalities, and these in turn lead onto further abnormalities, and so on. In fact the mitochondria abnormalities found in CFS affect the entire body as mitochondria are the body's "energy factories". Another is neuro-endocrine abnormalities which consist of neurological and endocrine abnormalities which in turn can lead to immune system abnormalities. The body is a series of complex interacting systems, where one or more abnormalities can create or contribute to other abnormalities. Scientific findings and trials have to become more integrated to give a more coherent picture of CFS and the various sub-groups found in CFS  -  but this requires more funding and money.

The long awaited Diagnostic marker has not been found by researchers and scientists because there are sub-groups even within the small groups of patients researchers have examined. Researchers will typically find a particular abnormality among 40 - 70% of their patient population, and wonder why this abnormality cannot be found in the other 30 - 50% of the patient population. These findings appear contradictory and confusing to researchers, unless one accepts the existence of sub-groups within CFS. Once one accepts this, one can progress towards more effective research methods, and more effective diagnosis and treatment. This will mean very comprehensive, thorough and sensitive tests of all CFS patients to establish the specific abnormalities and dysfunctions in each individual case, and then dividing patients into relevant sub-groups according to their diagnostic markers. Thus each sub-group will consist of people with very similar symptoms and identical diagnostic markers and they will be given particular treatment plans aimed at alleviating their specific abnormalities and dysfunctions. This route to recovery has been successfully applied by several American doctors, and most patients have made full recoveries. This is outlined in the Patient and Doctor Recovery Databases on this web-site. This is the only viable option open  to CFS patients at present.

The main obstacles to effective CFS research can be summarised as follows:

(1) a lack of national government funding for CFS research in individual countries around the world. Industrialised and Developed countries could and should put more money into CFS research.

(2) a lack of European Union funding for CFS research

(3) low priority is given to CFS research by research agencies such as the NIH and CDC in the USA  and the state-funded research agencies in Britain, France and Germany. Yet CFS is estimated to cost the US economy $24 billion a year in lost economic revenues and productivity, and up to $50 billion in lost tax revenues, increased health care costs and payment of disability benefits, and people are dying of CFS and related health complications (see Memorial)

(4) vitally important research proposals lie idle because of a lack of funding  eg. genetic studies into the root causes of CFS. There is no proper prioritisation of funding by governments and ME / CFS support groups. High priority areas such as the root causes of CFS receive little or no funding, and are in fact starved of funding, while low priority areas such as the secondary symptoms in CFS and so called "CBT therapy" have received a lot of funding. The result is stagnation in CFS research and our understanding of CFS. All CFS research funding should be prioritised with high priority areas receiving most of the funding and low priority areas such as the secondary symptoms receiving small amounts or no funding. What are the high priority areas ? Click here to view the high priority areas in research .

(5) lack of standardisation for taking, storing and examining samples from CFS patients. This has led to contradictory research findings and some confusion in the field.  

(6) many researchers fail to divide CFS patients into proper Sub-groups and then they find diagnostic markers in 30-60% of patients but not in the other 70-40% of CFS patients. Thus there is contradictions and confusion in the research findings. Internationally recognised and standardised Sub-groups within CFS need to be put in place for research purposes.

(7) scientific findings and trials are not integrated enough to give a coherent view of the complex interacting systems involved in CFS. The various abnormalities and dysfunctions should be linked up in research so as to understand their interactions with each other and their internal and external dynamics over time.

(8) important research findings from the past are not acted upon because of a lack of funding and a lack of cooperation, collaboration and communication between all of the researchers in the field. 

(9) some researchers have created patents for CFS diagnosis and failed to share research findings and material with other researchers in the field. Government's in the EU and USA should make it a legal requirement to share such research results with other researchers, the global scientific community and the general public, and subject the research to peer review. This knowledge would give scientists and researchers a greater understanding of what causes CFS, where to focus research efforts and how to develop an effective treatment. 


The above nine areas must be tackled in order to achieve a breakthrough in the research field. There is no one "miracle cure" for CFS at the moment and for the forseeable future, and at the current rate of low research funding it may take 40 years or more for a so called  "miracle cure"  or  "miracle cures" to emerge. This is the harsh reality for CFS patients and their families.

We cannot force governments to put adequate money into CFS research, but we can work with what knowledge and resources we have, while lobbying government ministers and officials to invest more resources in research. There is some hope to be gained from  (a) what quality research has been undertaken   (b) understanding how people have recovered from CFS and the doctors who treated them   (c) lobbying government ministers and officials to put more funding into CFS research so as to reduce the mass suffering and enormous economic costs on individual countries   -   these three factors forms the objective of this web-site.

| Back to Index |