Scientific evidence of organic, physical illness in ME patients
For Doctors, Consultants, Nurses, Health professionals, Scientists, Senior Civil Servants, and Politicians
ME is serious physical, organic illness as the extensive research from around the world (listed below) clearly shows. If you are a doctor, consultant, specialist, scientist, researcher or government official, you can acquire an excellent introduction to ME in the following research papers, lectures and internationally agreed definitions.
Medical Diagnostic Protocols and Treatment Protocols using Best International Practises
There is international agreement between experienced doctors, scientific researchers, medical authorities and governments in relation to what constitutes ME and the diagnostic and treatment guidelines.
ME/CFS has several subgroups, and each subgroup contains some of the above biological abnormalities, dysfunctions and infections mentioned above.
The Dubbo Studies which were published in leading medical journals point to genetic factors, environmental factors and a post-infectious dysfunctional immune system as being the key factors in ME / CFS.
Overview of Immune System markers and associated Genetic markers in ME / CFS The following video of a lecture by Dr. Gordon Broderick, University of Alberta presents the immune system findings and underlying genes involved in this illness
Phases or Stages of the Illness The phase of the illness will affect biomarkers and the immune system subsets. These can change over time. Tests on 285 ME patients and 200 controls in 2013 by Hornig et al. in New York show that there are significant differences in biomarkers between patients who have the illness for 3 years or less, and those who have it for more than 3 years. This explains the slight differences between patient groups which consistently appear in scientific studies. (Preliminary findings of Hornig et al., September 2013). This ties in to the findings of Dr. Paul Cheney who has stated there are 3 phases of the illness - phase 1, 2, 3. This is important as ME progresses over time, and the patient usually develops multiple biological dysfunctions and abnormalities and can become very disabled.
Dr. Paul Cheney has treated thousands of ME patients in the USA since the early 1990's has identified 3 phases of the illness in the following lectures Lecture by Dr. Paul Cheney who has successfully treated hundreds of ME patients in the USA Summary of the above lecture by Dr. Paul Cheney
Research Findings The scientific research shows that ME is a chronic disabling physical illness, which involves multiple dysfunctions and abnormalities. The research strongly suggests the illness involves the following :
(1) Immune system dysfunctions and deficiencies caused and accompanied by viral / mycoplasma / pathogen infection (active and latent) and/or toxins. Defects in the 2-5a synthetase / RnaseL anti-viral pathway & PKR pathway with effects on immune system function and important ion channels which in turn has multiple domino effects on the body. Low numbers of NK cells and reduced NK cell function and cytotoxicity. Chronic immune system activation with dominance of pro-inflammatory cytokines. T reg cell abnormalities and an abnormal CD4/CD8 ratio. Autoimmunity, with strong indications of B cell abnormalities. Gastrointestinal abnormalities which contribute to immune system dysfunctions and chronic infection. Increased vulnerability to opportunistic infections over time. Also in subgroups, significant evidence of chronic inflammatory immune system from regular exposure to molds and mycotoxins. The chronically activated inflammatory immune system causes many adverse effects on the body over time. (2) in most cases continuing viral, mycoplasma, bacteria and other pathogen infections (both active and latent, including partially latent) of the nervous system, nerve junctions, brain, immune system cells, intestines, joints, muscles, and other body organs. These infections may be causative, opportunistic or a co-factor in the illness. High levels of oxidative and nitrosative stress arising from chronic immune system inflammation, infections, immune system and cellular dysfunctions, and toxin build up. (3) toxic build up in the body. Flow reversal in the liver and the brain. Chronic Cerbral Spinal Venous Insufficiency (CCSVI). Chronic Hepatic Venous Insufficiency (CHVI). Cardiac Dysfunction. This reversal leads to auto-intoxication and a build up of toxins and toxin related damage to cells, tissues, organs, glands, immune system, nervous system, mitochondria and ATP production with serious effects for the patient over time. Cardiac dysfunction is believed to play a key role in the initiation of this flow reversal. (4) dysfunctions of the central nervous system, the brain and the autonomic nervous system, and involves significant chronic inflammation, lesions, reductions in grey and white matter, brain hypoperfusion, increased ventricular lactate, spinal fluid abnormalities, autonomic dysfunctions and other abnormalities. This resulting from infections, a chronically activated inflammatory immune system, toxins, defects in oxygen transport and absorption, and mitochondria damage and dysfunctions. This adversely affects many other body functions.
(5) ATP, mitochondria & krebs cycle dysfunctions and abnormalities. Including abnormal mitochondria destruction and abnormal mitochondria membranes, structures and electron transport, which adversely affects the entire body. This is due to chronic infections, a chronically activated inflammatory immune system, toxins and the high levels of oxidative and nitrosative stress. This is the most important factor as the mitochondria and krebs cycle produces ATP, and the immune system, the nervous system, the brain, the muscles, the heart, the glands, and all the organs rely on the mitochondria and ATP. Any significant deficiency in ATP will cause a slow down in the activity of these organs and the body, and more serious deficiencies can cause extreme tiredness most or all of the time. The mitochondria and ATP govern states of tiredness and exhausation. This explains the VO2 max abnormality and post-exercise malaise commonly found in ME patients. Cardiac dysfunctions in ME are related to these mitochondria dysfunctions and chronic infections and inflammatory damage. (6) methylation cycle blocks and glutathione deficiency throughout the body. The methylation cycle is important and produces many substrates and co-factors for other body organs and processes, including the mitochondria. Deficient glutathione increases oxidative and nitrosative stress and this contributes to mitochondria abnormalities and dysfunctions. (7) HPA axis dysfunctions, in particular hypothalmus gland, adrenal gland and thyroid gland dysfunctions and abnormal hormone output, which adversely affects hormones, sleep and immune function. This itself is related to the brain and neurological dysfunctions mentioned above.
All of these 7 factors are the core of the illness, the perpetuating factors over time found in all ME patients at phase 1, 2 or 3 of the illness. In the case of the 2-5a synthetase / RnaseL anti-viral pathway, it is believed that human leukocyte elastase and/or calpain cleaves the 80 kDa form of RnaseL into 37 kDa RnaseL, cleaves STAT1-alpha protein and p53 protein and Actin, bringing about deficiencies in these proteins. These proteins are essential for normal immune system function, and their depletion and abscence leads to serious and continuing immune system dysfunction. And there is an accompanying increase in NF-Kb levels and activity which is pro-inflammatory and pro-Cancer. The 7 initial disruptions / injuries, numbered (1) to (7) above persists over time and has a domino effect on other cellular functions and body functions leading on to several other dysfunctions, and to severe illness. Causes may have several orgins, according to scientific research
Further corroborating scientific evidence of viral infections and bacteria infections in ME is provided by Harvard Medical School Professor Anthony Komaroff and Neurologist Tracey Cho in their paper ' Role of Infection and Neurologic Dysfunction in Chronic Fatigue Syndrome.' Anthony L. Komaroff, Tracey A. Cho. Semin Neurol 2011; 31(3): 325-337.
IACFS/ME Conference. Translating Science into Clinical Care. March 20-23, 2014 • San Francisco, California, USA Daniel Peterson, M.D., Griffith University, Gold Coast, Australia, Owner, Sierra Internal Medicine, Incline Village, NV Sonya Marshall - Gradisnik, BSc (Hons), Ph.D. , Professor of Immunology, Director, National Centre for Neuroimmunology & Emerging Diseases, Griffith University, Australia Sharni Hardcastle, Ph.D., Research Assistant and Practical Demonstrator , Bond University, Gold Coast, Australia Nancy Klimas, M.D. Ph.D., Professor of Medicine and Director, NSU COM Institute for Neuro-Immune Medicine Director, Miami VAMC Gulf War Illness and ME/CFS Research Program Paula Waziry, Ph.D, Assistant Professor, Neuro Immune Medicine, COM, Nova Southeastern University, Miami, Fl Konstance Knox, Ph.D., Founder, CEO, Coppe Healthcare Solutions David Baewer, M.D. Ph.D, Medical Director, Coppe Healthcare Solutions Isabel Barao, Ph.D., Research Assistant Professor, University of Nevada, Reno, Simmaron Research Scientific Gunnar Gottschalk, B.S., Simmaron Research, Incline Village, NV Troy Querec, Ph.D., Associate Service Fellow, Centers for Disease Control and Prevention, Atlanta, GA Dennis Mangan, Ph.D., Chair, Trans-NIH ME/CFS Research Working Group, Office of Research on Women's Health, U.S. National Institutes of Health Mary Ann Fletcher, Ph.D., University of Miami Miller School of Medicine Professor of Medicine, Microbiology/Immunology and Psychology Elizabeth Unger, M.D. Ph.D., Chief, Chronic Viral Disease Branch, Division of High-Consequence Pathogens and Pathology, National Center for Emerging and Zoonotic Infectious Diseases. Centers for Disease Control and Prevention, Atlanta, GA
Jason LA, Sorenson M, Porter N, Belkairous N (2010), "An Etiological Model for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome", Neuroscience & Medicine, 2011, 2, 14-27, PMID: 21892413, doi:10.4236/nm.2011.21003 Published Online March 2011
Lectures by Leading ME / CFS Medical Doctors and Scientific Researchers
Dr. Anthony Komaroff is a medical doctor and a Professor of Medicine in Harvard Medical School in the USA. He has been treating ME / CFS patients and researching the illness since 1987. He is an internationally recognised ME expert. He has advised several Federal Bodies in the USA on the subject of ME / CFS over the years.
Dr. Dan Peterson, is a medical doctor who has been treating ME / CFS patients since the mid 1980's and is an internationally acclaimed ME doctor and expert. He was involved in the Lake Tahoe epidemic in the USA in the mid 1980's, and treated many patients and provided samples to the CDC and other Federal bodies. He worked in general practise for many yerars, and at the Whittemore Peterson Institute for several years, and now runs the Sierra Internal Medicine clinic in Nevada. He also serves on Simmaron Research's Scientific Advisory Board. He has seen thousands of ME / CFS patients over the years. Lecture by Dr. Dan Peterson below providing a medical and scientific overview of ME / CFS (Stockholm, November 2011). 4 continuous videos of his lecture below
Dr. Kenny De Meirleir is medical doctor based in Belgium and in Nevada in the USA. He runs a well known medical clinic in Belgium and also works for the Whittemore Peterson Institute in Nevada in the USA. He has been treating ME / CFS patients and researching the illness since 1990. He has seen thousands of ME / CFS patients over the years. The medical and scientific findings of Dr. Kenny De Meirleir over 20 years support the role of infections and immune system abnormalities in ME / CFS. Lecture series by Dr. Kenny De Meirleir videos 1 - 20, created in 2012 and 2013. Specifically for medical doctors and hospital consultants.
Commentary & Discussion
Infections and immune system abnormalities in ME / CFS
Dr. Paul Cheney is a medical doctor and an internationally respected ME expert. He has successfully treated hundreds of ME / CFS patients in the USA since the mid 1980's.He was involved in the Lake Tahoe epidemic in the USA in the mid 1980's, and treated many patients and provided samples to the CDC and other Federal bodies. He runs The Cheney Clinic in the USA.
Dr. Byron Hyde is a medical doctor based in Canada. He has been treating ME / CFS patients and researching the illness since 1985. He has seen thousands of ME / CFS patients. Dr. Hyde is an internationally recognised ME expert and has contributed much to research, and clinical practise methodologies, including the Canadian Consensus Criteria 2003 and International Consensus Criteria 2011. Lecture Winter 2012
Dr. John Chia, is medical doctor based in California, who is world renowned for his work, particuarly with Enteroviruses. He has been treating ME / CFS pateints and researching the illness since the late 1990's. He has found that Enteroviruses are present in some subgroups of ME patients and that treating these Enterovirus infections can lead to significant improvement and recovery.
Enteroviruses have been associated with ME since the 1930's. Names such as 'Epidemic Neuromyasthenia’, ‘Encephalitis’, ‘Akureyri Disease’, ‘atypical poliomyelitis’, 'Iceland disease', ‘poliomyelitis-like epidemic neuromyasthenia’ ‘Abortive Poliomyelitis’ were used to describe the illness prior to the term ‘Myalgic Encephalomyelitis’ being created by Dr. Melvin Ramsey in 1956. Enteroviruses were implicated in most epidemics from the 1930's to the present day.
Dr. Martin Lerner is a medical doctor with 40 years experience. Certified by the American Board of Internal Medicine and is an Infectious Disease Specialist. Residency, Internal Medicine, Harvard Medical Services. Boston City Hospital and Barnes Hospital, St. Louis, MO. Washington University School of Medicine, M.D. Two Years, National Institute of Allergy and Infectious Diseases, Epidemiology Unit.
Alumni Awardee, Washington University School of Medicine.
Three years research fellow in infectious diseases at the Thorndike Memorial Laboratory, Boston City Hospital and Harvard Medical School under the direction of *Dr. Maxwell Finland, (founder of subspecialty infectious diseases). Chief of the Division of Infectious Diseases and Professor of Internal Medicine at Wayne State University School of Medicine, 1963-1982. Established a clinical virology laboratory and trained 33 physicians in the subspecialty of infectious diseases, Wayne State University, 1963-1982.
Dr. Sarah Myhill is a distinguished and highly regarded medical doctor and researcher based in Wales. She runs the famous Myhill Clinic there. Dr. Myhill has been treating ME patients and researching the illness since the mid 1990's. Her team's collaboration with Oxford University researchers into Mitochondria has been revolutionary and provided important new medical insights into Mitochondria and their role in illness and disease.
The following video lecture was presented by Dr. Sarah Myhill in 2014. Her areas of speciality are the mitochondria, oxidative stress, toxins, and the immune system, and the inter-relationship between them in ME/CFS patients. She provides a brilliant analysis of these areas and provides some useful diagnostics and treatments for patients.
Dr. Jose Montoya is a medical doctor and a Professor in Stanford University Medical School in the USA. He has been treating ME / CFS and researching the illness since 2000. His work concentrates on viral and pathogen infections and immune dysfunctions in ME / CFS.
Dr. Garth Nicolson is a professional scientific researcher based in Florida, USA. He has been researching pathogen infections and immune dysfunctions since the late 1980's. He runs the Institute for Molecular Medicine, and has carried out extensive research on hundreds of ME / CFS patients over the years. The scientific and medical findings of Dr. Garth Nicolson (USA) has consistently found that high percentages of ME patients have mycoplasma infections. A significant percentage also have co-infections including HHV6a and various bacteria infections. This correlates to illness severity. Dr. Nicolson also found evidence of immune dysfunctions. This ties into the work of other scientists and doctors who have consistently found viral, mycoplasma and other pathogen infections, along with immune dysfunction in ME patients.
Dr. Malcolm Hooper is a British Pharmacist and emeritus professor of medicinal chemistry at the University of Sunderland in Britain. He has researched and published many papers on ME and Gulf War illness. He is Chief Scientific Adviser to the British Gulf War Veterans Association. He is the medical advisor for The Grace Charity for ME in Britain.
Video Lectures by Dr. Malcom Hooper. Videos 1 - 10
Dr. Ritchie Shoemaker is a medical doctor based in Maryland, USA. He is one of the top experts on mycotoxins in the world. He has been treating ME / CFS patients since the late 1990's, and he believes that myctoxins are a major factor in some ME / CFS subgroups and in other illnesses. Mycotoxins are accepted by the CDC and NIH in the USA as being hazardous to health. Lecture below on the effects of chronic myoctoxins and mold exposure on the immune system, endocrine system and nervous system.
Dr. Paul Cheney, Dr. De Meirleir and Dr. Peterson (mentioned above) are now using tests for mycotoxins as part of their diagnostics protocol for ME / CFS.
Dr. Andrew Campbell is a medical doctor who has seen ME / CFS patients since the late 1990's. He believes that myctoxins are a major factor in some ME / CFS subgroups and in other illnesses. Mycotoxins are accepted by the CDC and NIH in the USA as being hazardous to health. Lecture below on the effects of chronic myoctoxins and mold exposure on the immune system, endocrine system and nervous system.
Dr. Paul Cheney, Dr. De Meirleir and Dr. Peterson (mentioned above) are now using tests for mycotoxins as part of their diagnostics protocol for ME / CFS.
Scientific Research Issues
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.
"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 $5 million or or less than $1.50 per patient based on 3.16 million Americans have ME / CFS. This is a tiny amount to spend on research. This is far too little and totally unacceptable.
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.
By calling ME a mental illness, psychiatrists have undermined the credibility of ME and this has affected it's research funding from governments. One research institute in the USA embezzled funds which were designated for ME research in the 1990's based on the false psychiatric premise that it was a non illness. 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). 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.
ME support groups and advocacy groups and ME researchers must engage more closely with government funding bodies, research funding bodies, Universities, research institutes to get them to fund and undertake research into ME/ME. Prioritising research which will replicate existing studies based on diagnostics and treatments.
Government research funding could start at $90 per patient (65 euros, £55) 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: 2.97 million euros per year Britain: £34 million per year USA: $284 million per year European Union: 325 million euros per year