What is ME / CFS ?

ME  stands for Myalgic Encephalomyelitis which is a Latin name meaning inflammation of the brain and muscles. CFS stands for Chronic Fatigue Syndrome, this is an American term used to describe ME. Since the words ME and CFS are both used to describe the same illness, it is customary to use the term ME / CFS to describe the condition. We have used this on our web-site.

The scientific and medical evidence show that ME / CFS is a highly complex illness, involving multiple factors  -  a seriously weakened immune system similar in some respects to AIDS, numerous viral infections, mycoplasma infections, defective mitochondria function and organic brain and nerve damage. These scientific findings have been confirmed by genetic studies of the illness completed in Summer 2005. Up to 16 abnormal genes have been identified so far, these genes correlate to the immune system, brain, neurological and mitochondria abnormalities found in CFS  ( Click here to view the genetic research paper ) . However, larger genetic studies already underway may identify more abnormal genes, possibly 50-100 abnormal genes. 

Many of the medical abnormalities found in ME / CFS cannot be detected in standard blood tests in Ireland. Newer high-tech blood tests are required to identify the specific medical abnormalities found in ME / CFS patients ; these tests are currently not available in Ireland as of November 2006. A special Clinic would have the resources to invest in this technology and could serve as a focus point for diagnosing and treating the illness in Ireland.

The appalling lack of government research into CFS in Europe, North America and Asia since 1980 means that CFS patients have been deprived of a reliable diagnostic test and treatment for many years. Doctors and specialists have been working in the dark, not knowing how to diagnose CFS or what treatments to give their patients. However the work of dedicated scientists, researchers and doctors from around the world since 1998 has provided new hope for CFS patients. It is now possible to get a diagnosis of CFS which is highly accurate and focuses on a number of serious biological disorders.  This is outlined in the Canadian Diagnostic and Treatments protocols issued in 2003  -  to view these, click on the following link  Myalgic Encephalomyelitis / Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols (2003) . These new diagnostic protocols / criteria were introduced in Canada in 2003, and include findings from the latest medical and scientific research from around the world.

Research Findings
The scientific research shows that CFS is a chronic disabling illness, which involves multiple dysfunctions and abnormalities including a combination of the following:
 - specific immune system abnormalities
 - specific endocrine and glandular abnormalities
 - specific abnormalities with one's genes
 - specific brain abnormalities
 - specific nervous system abnormalities
 - chronic Ciguatera poisoning in 80% or more of cases
 - specific intestinal abnormalities
 - specific vascular abnormalities
 - specific mitochondria abnormalities 
 - specific muscle abnormalities 
 - chronic viral / mycoplasma / chlamydia infection at some stage of the illness
Viruses include: HHV-6a virus, EBV, CMV, Coxsackie viruses, Stealth virus (from a subclass of retroviruses called "spumaviruses"), JHK virus,  Parvovirus B-19 infections, Enteroviruses in spinal fluids, blood, brain, nerve tissues, muscles
Mycoplasmas: M. fermentans, M. penumoniae, M. hominis, M. penetrans, M. pirum,  M. incognito. in spinal fluids, blood, brain, nerve tissues, muscles
Chlamydia:  Chlamydia pneumonia in spinal fluids, blood, brain, nerve tissues, muscles

These infections may be causative, opportunistic or a co-factor in the illness.

Genes involved in CFS
Scientific studies completed in Summer 2005 have shown that there is abnormal gene expression involved in CFS. Up to 16 abnormal genes have been identified so far, these genes correlate to the immune system, brain, neurological and mitochondria abnormalities found in CFS  ( Click here to view the genetic research paper ) . However, larger genetic studies already underway may identify more abnormal genes, possibly 50-100 abnormal genes. The wide range of abnormalities and dysfunctions being uncovered by genetic research shows that CFS affects many body parts simultaneously ; it is a multi-factor illness. Genetic research has shown conclusively that CFS is a serious physical organic disease. Further genetic research will uncover more of the body systems and dynamics involved in CFS.

Scientific research is also consistently showing us chronic HHV-6a virus infection of the brain, brain stem and spine in 40% -  65% of CFS patients  -  see research into HHV-6a virus (in.pdf format). HHV-6a virus also attacks the immune system and can keep it in a permanently weakened state. The HHV-6a virus is ‘neurotropic’ meaning it prefers to live in brain tissue, spinal fluids and in nerve tissue, and is not detected in routine blood tests. Research now shows that HHV6a virus is also a major factor in AIDS and Multiple Sclerosis (MS). This finding is very serious and warrants further investigation and research. This is investigated in more depth in our Scientific Evidence section which collates scientific research from around the world. The above abnormalities help explain the severe exhaustion, muscle pains, physical weakness, loss of memory, mental confusion, infections, lymph swelling and other symptoms found in CFS. It is widely believed that a breakdown in the immune system is the root cause of CFS, and that infections and other abnormalities follow on from this. Recent research is slowly unravelling the root causes of CFS  -  click here for the main research priorities. 

Population Prevalence

In Ireland approximately 10,000 people have CFS. In Britain, it is estimated that 200,000 people have CFS. In the USA, in 2004, the Centers for Disease Control (CDC)  estimated that 2.2 million people have CFS, the CDC report was published in the online science journal Population Health Metrics. Globally, it is estimated that 90 million people have CFS.

Name of Illness

In the USA, CFS is now being called Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) to emphasise the importance of immune system abnormalities in this particular condition. Yet the immune system abnormalities are just one set of abnormalities, there are also important endocrine, neurological, brain, mitochondria and muscle abnormalities, and several Sub-groups within the illness. CFS should be called "Chronic Endocrine, Nervous system and Immune Dysfunction Syndrome" (CENIDS). This gives a more accurate and fair description of the illness. It is inappropriate to call the illness "Chronic Fatigue Syndrome" as fatigue is secondary to the illness, it is a by-product of the illness, in the same way that fatigue is a by-product of Cancer, AIDS, Hepatitis, Addison's disease, Diabetes, etc.. Would we call diabetes "chronic thirst syndrome", or call hypothyroidism "chronic coldness syndrome" or call anemia "chronic weakness syndrome" or call eczema "chronic itching syndrome" or call alzheimer's disease "chronic forgetfulness syndrome" or call cancer "chronic tiredness and weakness  syndrome". It's time to get rid of the inappropriate and derogatory name "Chronic Fatigue Syndrome". Scientific research and evidence from around the world supports the term "Chronic Endocrine, Nervous system and Immune Dysfunction Syndrome" (CENIDS).

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, Autism, 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 illness". There is a need for medical precision in all cases of disease, including CFS ; people are dying of CFS and the health complications caused by CFS. CFS is a disease, and scientific research has shown us a clear underlying disease process  (See Scientific Evidence section).

Serious Illness

CFS can be deadly, thousands of people around the world have died of CFS and health complications caused by CFS , see Memorial section. CFS bears a resemblance to Cancer and AIDS in the sense that many CFS patients have died of opportunistic infections and certain cancers due to a depleted immune system. Research also shows that CFS patients have serious heart and vascular abnormalities arising from CFS, making them highly susceptible to a sudden heart attack. Many CFS patients have died prematurely of heart attacks. There is also a high rate of suicide among CFS patients, this being brought about by frustration, desperation for some cure, social isolation, lack of support, constant pain, exhaustion and weakness, and financial hardships.

For more details about the connection between CFS and AIDS, view the online book   ' 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.

In 1990, the well-known American immunologist Nancy Klimas published a research paper in the Journal of Clinical Microbiology, in it she reported that the array of immunological defects in CFS suggests that it is a form of acquired immuno-deficiency (Nancy Klimas, et al "Immunologic abnormalities in Chronic Fatigue Syndrome", Journal of Cliniucal Microbiology, 28, (June 1990) )  
Research by Anthony Komaroff of Havard Medical School and other Harvard researchers confirmed that brain abnormalities in CFS were very similar to those found in AIDS Dementia Complex ( Richard B. Schwartz et al., ' SPECT Imaging of the Brain: Comprison of Findings in Patients with Chronic Fatigue Syndrome, AIDS Dementia Complex, and Major Unipolar Depression ' American Journal of Roentgenology 162 (April 1994): 943-51 )
Dr. Paul Cheney (who has successfully treated hundreds of CFS patients) stated "These patients look a lot more like multiple sclerosis (MS) patients or AIDS dementia patients, whose dysfunctions are also subcortical". (See Scientific Evidence section).

People On the Sickness Impact Profile Scale (SIPS), CFS patients test as high or higher than people with Cancer and heart attack (Oslers Web, by Hillary Johnson, Penguin Books 1997, page 292). On May 12 1995, testifying before a US congressional briefing, AIDS specialist Mark Loveless told legislators that a CFS patient "feels every day significantly the same as an AIDS patient feels two months before death". Mr. Loveless supported his statement with data from research conducted at his own institution and morididity data provided by other CFS experts who had compared the two diseases (AIDS and CFS). If you are a doctor, scientist, researcher or government official, you can acquire an excellent introduction to CFS in the Scientific and Medical research section

Recovery from CFS

Clinical studies show that 10% or less of CFS patients make a full recovery. Despite the seriousness of the illness, a few thousand people around the world have fully recovered from ME / CFS. Considering the fact that approximately 90 million people around the world have ME / CFS, this means only a very small percentage have fully recovered. This web-site is dedicated to unravelling how these people fully recovered. Information from around the world regarding people who have had full recoveries from CFS has been collected, verified and collated on this web-site. A Database has been set up on this web-site for this purpose, and it is being updated continuously. What can we learn from those people who have recovered from CFS ? What can we learn from those dedicated, patient, considerate and highly professional doctors who treated  them ? This is the objective of this web-site.