Doctor Training



Most medical students and medical schools do not cover the subject of ME / CFS. Many doctors do not know about ME / CFS and the immune dysfunctions, infections, neurological dysfunctions, endocrine dysfunctions and mitocondria abnormalities in ME / CFS. Some doctors wrongly believe it to be a psychological illness. Most doctors do not know about or have not read the best international practises for diagnosing and treating ME / CFS, this being Myalgic encephalomyelitis: International Consensus Criteria, 2011 and Myalgic Encephalomyelitis / Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols (2003) . In this section we will provide multimedia presentations about ME / CFS, the diagnostics, the treatments, the scientific findings, the clinical findings, the lectures of eminent medical doctors, special courses in Universities and hospitals, and other material to help inform medical doctors about ME / CFS

This is divided into the following sections

1. Opening Lecture by Dr. Anthony Komaroff, Professor of Medicine at Harvard Medical School in the USA

2. Medical Experiences of Dr. John Richardson, a British medical doctor, who treated ME patients for 40 years and researched the illness

3. The Medical Diagnostic Protocols and Treatment Protocols using Best International Practices for ME / CFS and Fibromyalgia

4. Research Findings

5. Biomarkers and Phases of the Illness

6. ME Epidemics throughout history

7. Medical and Scientific Textbooks and Books for doctors, consultants, nurses and medical students

8. Doctor Training Programs

(i) Doctor Training series - Video Lectures by leading ME / CFS Medical Doctors and Scientific Researchers

(ii) in top ME/CFS clinics and medical practices

9. Important Medical and Scientific Facts, Evidence and Research

10. Scientific Models of the Illness

11. Bogus Treatments

12. National and International Conferences and Seminars

13. Special Training Programmes in Universities, Hospitals, Clinics and Institutes

14. The most successful ME medical clinics in the world


1. Opening Lecture by Dr. Anthony Komaroff, Professor of Medicine at 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.

 

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2. Medical Experiences of Dr. John Richardson, a British medical doctor, who treated ME patients for 40 years and researched the illness



Dr. John Richardson, a medical doctor based in Newcastle in England treated ME patients from many parts of Britain for over 40 years. He developed an expertise in diagnosing the illness, and became one of the world's foremost experts in ME. He even used autopsy results from dead patients to investigate the illness. He found that Enteroviruses and toxins played a major role in ME, and that this led to immune dysfunction, neurological abnormalities, endocrine dysfunction, and over time to increased risk of cardiac failure, cancers, carcinomas, and other organ failure. He wrote a book about his medical experiences called Enteroviral and Toxin Mediated Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. This book is a classic medical book on the illness, and provides an excellent introduction to ME.


3. Medical Diagnostic Protocols and Treatment Protocols using Best International Practices
ME is a chronic physical illness, which is multi-factorial, involving immune system dysfunctions, neurological dysfunctions and abnormalities, chronic infections of the nervous system, brain, muscles, glands and intestines in subgroups of patients, HPA axis and endocrine dysfunctions, mitochondria abnormalities and dysfunctions and cardiac and vascular system abnormalities. CFS is an ME type illness first defined during the Lake Tahoe Epidemic in the 1980's in the USA, and CFS and ME share many similarities. 'Lake Tahoe illness' would be a more appropriate term than CFS, as it is associated with that epidemic. Some doctors and researchers believe that ME and CFS are the same illness, and they cite previous names for ME such as ‘Epidemic  Neuromyasthenia’, 'Atypical Poliomyelitis’, 'Iceland disease', ‘Encephalitis’,  'Encephalitis lethargica', ‘Akureyri Disease’,  ‘Poliomyelitis-like epidemic neuromyasthenia’, 'Diencephalitis',  ‘Abortive Poliomyelitis’. Fibromyalgia is common in both ME and CFS patients, and has it's own biological markers. There is international agreement between experienced doctors, scientific researchers, medical authorities and governments in relation to what constitutes ME and CFS and Fibromyalgia and the diagnostic and treatment guidelines.

ME Diagnostics

ME Dignostics criteria and Biomarkers Checklist & Treatments

 

4. Research Findings

Listing of Research findings and papers worldwide and categorisation of biological abnormalities and dysfunctions and infections found in ME

  1. Immune system dysfunction and abnormalities
  2. Genetic markers
  3. Severely Damaged Mitochondria and Defective Krebs cycle and ATP production
  4. Viral infections
  5. Mycoplasma infections
  6. Serious Bacteria infections
  7. Micro RNA (miRNA) profiles
  8. Cryptostrongylus Pulmoni infection
  9. Vaccines and ME/CFS
  10. Increased risk of Cancer
  11. Environmental Toxins, Molds & Mycotoxins, Heavy Metals, Organophosphates
  12. Orthostatic intolerance & Postural orthostatic tachycardia syndrome (POTS) & Body fluid abnormalities
  13. Serious Brain and nervous system abnormalities
  14. Spinal Fluids & Proteomic Markers
  15. Cognitive Dysfunctions & 'Brain Fog'
  16. Effects of Exercise, GET and CBT
  17. Muscle abnormalities
  18. Abnormal HPA axis (Hypothalmus Pituary Adrenal axis) & Abnormal glandular functions
  19. Intestinal Abnormalities and Microbiome
  20. Cardiac and Vascular and Blood vessel problems. Increased risk of heart attack
  21. Idiopathic CD4+ T lymphocytopenia
  22. Methylation cycle blocks and glutathione deficiency
  23. Increased oxidative stress
  24. Channelopathy & Disturbance in the way certain ions (mainly sodium and potassium salts) are transported in and out of cells across the cell membranes
  25. Sleep abnormalities
  26. Ciguatera and ME
  27. Telomere shortening
  28. Abnormal red blood cell structure
  29. Abnormal Sedimentation rates
  30. Inability to metabolise glucose and sugar
  31. Defects in Lymphatic Drainage
  32. Lowered oxygen consumption in ME patients
  33. Substance P is elevated in ME patients
  34. Abnormal Plasma RNA's
  35. Abnormal Urinary metabolites
  36. The presence of crimson crescents in the mouth
  37. Beta 2 microglobulin levels as a measure of the severity of the condition
  38. Abnormal levels of serum Chromogranin-A. Evidence of Celiac disease in some ME patients
  39. Skin rashes, acne and allergies worsen after the onset of ME
  40. Clonal Excess Abnormality
  41. Other Serious Abnormalities
  42. Sub-groups within ME

The following paper by the organisation Paradigm Change details many of the biological abnormalities, dysfunctions and infections found in ME and CFS patients and research papers to support this.
ME/CFS and Medical Abnormalities - Medical Research paper.

The Dubbo Studies which were published in leading medical journals verify much of the above, and point to genetic factors, environmental factors and a post-infectious dysfunctional immune system as being the key factors in ME / CFS.

Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study. Hickie I, Davenport T, Wakefield D, Vollmer-Conna U, Cameron B, Vernon SD, Reeves WC, Lloyd A; Dubbo Infection Outcomes Study Group. BMJ. 2006 Sep 16;333(7568):575. Epub 2006 Sep 1.

Cytokine polymorphisms have a synergistic effect on severity of the acute sickness response to infection. Vollmer-Conna U, Piraino BF, Cameron B, Davenport T, Hickie I, Wakefield D, Lloyd AR; Dubbo Infection Outcomes Study Group. Clin Infect Dis. 2008 Dec 1;47(11):1418-25. doi: 10.1086/592967.

Summary
The scientific research, much of it catalogued above and in the Scientific Evidence Section, shows that ME is Multi-Factor illness, a chronic disabling physical illness, which involves multiple biological dysfunctions and abnormalities.
According to gene studies and other biological studies, there are at least 5 subgroups in ME / CFS. Many patients also have co-existing illnesses. We are dealing with a high level of biological complexity here. The research strongly suggests the illness involves the following

Primary biological dysfunction and abnormality
(1)
ATP, mitochondria & krebs cycle dysfunctions
The research and clinical work of Dr. Sarah Myhill, Dr. Behan and Dr. Paul Cheney and other doctors and researchers have consistently found this biological abnormality. Deficient ATP produced and deficient recycling of ATP. A rapid shift to anerobic metabolism, build up of lactic acid, purines, muscle pains etc. during and after exercise, and post-exercise malaise commonly found in ME patients. Oxidative & Nitrosative stress damage to inner & outer membranes of mitochondria, cristae, proteins, and DNA of mitochondria. Krebs cycle blocks. Redox failure. Ion channel interruption & dysfunctions affecting Ca. Mg. and K levels.  Deficient  Electron Transport Chain.  Impaired ATP production and Oxidative Phosphorylation. Impaired Translocator protein activity. Acceleration of AMP & glycolysis. This may be due to chronic infections, a chronically activated inflammatory immune system, hypoxia or lack of oxygen in cells, toxins and the high levels of oxidative and nitrosative stress in the illness. Mitochondria dysfunction is the most important factor as the mitochondria and krebs cycle produces ATP, which is fuel or energy for the immune system, the nervous system, the brain, the muscles, the heart, the glands, and all the organs. 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. This may explain Cardiac dysfunctions in ME as this can be related to mitochondria dysfunctions, chronic infections and inflammatory damage over time.

Secondary biological dysfunctions and abnormalities
(1) Immune system dysfunctions and deficiencies caused by or accompanied by viral / mycoplasma / pathogen infection (active and latent) and/or toxins. Overactive 2'-5' oligosynthetase pathway, defects in the 2-5a synthetase / RnaseL anti-viral pathway & PKR pathway with effects on immune system function and important ion channels. 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. These abnormalities strongly indicate an immune system which is being activated by chronic viral infection, and the immune system is becoming depleted or defective over time.
There is an accompanying increase in NF-Kb levels and activity which is pro-inflammatory. Low numbers of NK cells and reduced NK cell function and cytotoxicity. The Rituximab studies show that B cell abnormalities, including excessive levels of defective B cells are a major factor and may perpetuate the illness. This may be the result of a past infection or chronic infection of B cells. Chronic immune system activation with dominance of pro-inflammatory cytokines. T cell abnormalities, including depleted Suppressor cells, CD8 and T reg cell abnormalities and an abnormal CD4/CD8 ratio. Retrovirus infections have been found in ME patients, and these infections can deplete T cell suppressor cells and other T cell subsets. Interferon poisoning in some subgroups of patients, and this is is also linked to viral infections. The overactive immune system is progressing to autoimmunity in some cases, there are HLA abnormalities and other evidence of autoimmunity in many patients. VDR abnormalities which weaken immunity, and increase susceptibility to chronic infection and autoimmune risk (Dr. Marshall, Marshall Protocol). Gastrointestinal abnormalities which contribute to immune system dysfunctions. The immune system has a high demand for ATP in this illness, while ATP is being depleted through mitochondria destruction or degradation.
(2) the evidence from prior ME epidemics show that infections play a role in most ME patients. Top ME doctors A. Gilliam, Melvin Ramsay, Elizabeth Dowsett, John Richardson of Newcastle-upon-Tyne, W.H. Lyle, Elizabeth Bell, James Mowbray of St Mary’s, Peter Behan and Byron Hyde all believed that the majority of primary M.E. patients fell ill following exposure to an Enterovirus. Dr. John Richardson, a medical doctor based in Newcastle in England treated ME patients from many parts of Britain for over 40 years. He developed an expertise in diagnosing the illness, and became one of the world's foremost experts in ME. He even used autopsy results from dead patients to investigate the illness. He found that Enteroviruses and toxins played a major role in ME, and that this led to immune dysfunction, neurological abnormalities, endocrine dysfunction, and over time to increased risk of cardiac failure, cancers, carcinomas, and other organ failure. He wrote a book about his medical experiences called Enteroviral and Toxin Mediated Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. This book is a classic medical book on the illness, and provides an excellent introduction to ME. Historically, Enterovirus infections mainly target the nervous system, brain, muscles and intestines, all of which abnormal in ME patients.
In subgroups, there is evidence of Retrovirus infection and Herpes infections and changes to cell structures and to T cell subsets. There is evidence for 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. There are high levels of oxidative and nitrosative stress and inflammation, and cellular destruction, arising from chronic immune system activation, infections, immune system and cellular dysfunctions, and toxins.
(3) 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 adversely affects many other body functions.
(4)
Dr. Paul Cheney has found toxic build up in the body in many patients. Flow reversal in the liver and the brain. Chronic Cerbral Spinal Venous Insufficiency (CCSVI). Chronic He patic 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, etc.. (Dr. Paul Cheney)
(5) methylation cycle blocks and glutathione deficiency. 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.
(6) 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.

All of these 7 factors are the core of the illness, the perpetuating factors over time. Subgroups will contain most of the 7 factors mentioned above. There are slight differences between patient groups which are due to subgroups, genetic differences, different environment exposures and toxins, different infectious agents, different microbiome and metagenome status, and different diet and lifestyles. These abnormalities and dysfunctions have a domino effect on other cellular functions and body functions leading on to several other dysfunctions, and to severe illness.

The immune system dysfunctions and abnormalities in ME patients makes them more susceptible to various infections. The acquired infection(s) will depend on one's geographical location and exposures, and one's genetic status and immune system status. Some of the following pathogens have been consistently found in ME patients:

Viruses include: HHV6a virus, Herpes family viruses 1-8, Parvovirus B-19, CMV, Coxsackie viruses, Enteroviruses, Ross river virus, Q fever virus, Stealth virus, JHK virus,  Parainfluenza Virus-5 (PIV-5), Paramyxovirus and measles viruses of the  Paramyxoviridae family, Cryptovirus, Borna virus, HTLV family viruses, HGRV virus in spinal fluids, nerve tissues, blood, brain, intestines, and muscles. Retroviruses are important, as Retrovirus sequences were found in 85% of ME cases, and Anellovirus found in 75% of ME cases in research conducted by Dr. Hornig and Dr. Lipkin in Columbia University in September 2013. Most of these viruses listed here would include chronic, low level, sub-acute infections which inflict damage and immune activation, but which may not show up in standard or outdated tests.
Reactivated latent viruses include HERV-K18, Varicella-Zoster virus, Herpes family viruses 1-8, measles viruses of the  Paramyxoviridae family. Some viral infections can reactivate latent viruses and undermine immune system functions.

Mycoplasma: M. fermentans, M. penumoniae, M. hominis, M. penetrans, M. pirum,  M. incognito. in intestines, spinal fluids, blood, brain, nerve tissues, muscles. These mycoplasmas would include chronic, low level, sub-acute infections which inflict damage and immune activation, but which may not show up in standard or outdated tests.
Bacteria: Chronic Lyme disease, Ehrlichia, Bartonella, Brucella, Rickettsia, Chlamydia pneumonia, Staphylococcus spp. (live blood analysis), and Bacteria, including Microbiota of bacteria which include L-form, biofilm, and intracellular bacterial forms in spinal fluids, intestines, blood, brain, nerve tissues, muscles. Intestinal overgrowth of Gram positive D/L lactate-producing bacteria which are known to produce H2S (hydrogen sulfide) in the presence of certain heavy metals as a survival defense mechanism (Dr. Kenny De Meirleir). These bacteria would include chronic, low level, sub-acute infections which inflict damage and immune activation, but which may not show up in standard or outdated tests.
Parasite: Cryptostrongylus pulmoni (rare cases), Babesia, Candida, Giardia lamblia, Aspergillus Niger
Molds, Bacteria and Mycotoxins in water damaged buildings: Stachybotrys family of molds, Cladosporium, Penicillium, Alternaria, Aspergillus, mycobacteria, Actinomycetes, Lipopolysaccharides (LPS), Microbial Volatile Organic Compounds (VOCs), Hemolysins. These can cause chronic inflammatory immune response and immune dysfunction over time.

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


What is ME ? Multiple Paths leading into ME

Causes of Heterogenity, Excessive Subgroups & Phenotypes and inability to find a Universal Biomarker, and the Conflicting Test Results and Treatment Outcomes



5. Biomarkers and Phases of the Illness

(i) Biomarkers for dysfunctions, abnormalities and infections in ME / CFS


(ii) 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 successfully treated hundreds 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

What phase is the patient in, how long does he/she have the illness ? is the patient in remission or having a relapse ? is the patient severely ill, moderately ill or mildly ill. These will affect immune system subsets and other biological markers.

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

Dynamic Modeling for ME/CFS & Gulf War Illness Interventions from ME-CFSCommunity.com on Vimeo.


6. ME Epidemics throughout history

There have been well documented ME epidemics and outbreaks throughout history. These include the following:

1917 Van Economo reports an illness involving brain and neurological inflammation and great fatigue and some deaths. See paper 'New Clinical Entity' published in the Lancet in 1956.
1918 - 1924, several outbreaks of an illness involving brain and neurological inflammation and fatigue reported throughout Europe. See paper 'New Clinical Entity' published in the Lancet in 1956.
1924 England and Wales 5,039 cases of encephalitis lethargica. See paper 'New Clinical Entity' published in the Lancet in 1956.
1934 Los Angeles County Hospital. Called 'Atypical Poliomyelitis'
1936 Fond Du Lac, Wisconsin - St. Agnes Convent - Encephalitis
1937 Erstfeld, Switzerland - Abortive Poliomyelitis
1937 St. Gallen, Switzerland - Frohburg Hospital – Abortive Poliomyelitis
1939 Middlesex, England - Harefield Sanatorium
1939 Degersheim, Switzerland - Abortive Poliomyelitis
1945 Pennsylvania. Hospital of the University of Pennsylvania - epidemic Pleurodynia
1946 Iceland disease resembling Poliomyelitis with the character of Akureyri disease
1948 Iceland, North Coast towns - epidemic simulating Poliomyelitis
The outbreak in Iceland was important, and provided some vital clues about the illness.
"However, children in epidemic Neuromyasthenia areas responded to poliomyelitis vaccination with higher antibody titres than in other areas not affected by the poliomyelitis epidemic, as if these children had already been exposed to an agent immunologically similar to poliomyelitis virus (Sigurdsson, Gudnad6ttir Petursson, 1958). Thus, the agent responsible for epidemic Neuromyasthenia would appear to be able to inhibit the pathological effects of poliomyelitis infection. When an American airman was affected in the 1955 epidemic and returned home, a similar secondary epidemic occurred in Pittsfield, Massachusetts, U.S.A. (Hart, 1969: Henderson and Shelokov, 1959)."
Many outbreaks of ME or epidemic Neuromyasthenia worldwide followed an outbreak of polio virus.
Parish JG (1978), Early outbreaks of 'epidemic neuromyasthenia', Postgraduate Medical Journal, Nov;54(637):711-7, PMID: 370810.
1948 300 sporadic cases of epidemic Neuromyasthenia seen in South California between 1948 and 1965.
1949 Adelaide, South Australia - a disease resembling Poliomyelitis
1949 Cambridgeshire, England - aberrant poliomyelitis. Involvement of other Enteroviruses suspected.
1950 Louisville, Kentucky -- St. Joseph 's Infirmary - epidemic Neuromyasthenia
1950 Upper State New York -- outbreak resembling the Iceland disease, simulating " acute Anterior Poliomyelitis
1952 London, England - Middlesex Hospital Nurses ' Home - Encephalomyelitis associated with Poliomyelitis virus
1952 Copenhagen, Denmark - epidemic Myositis
1952 Lakeland, Florida - epidemic Neuromyasthenia
1953 Coventry and District, England - an illness resembling Poliomyelitis observed in nurses
1953 Rockville, Maryland - Chestnut Lodge Hospital - Poliomyelitis-like epidemic Neuromyasthenia
1953 Jutland, Denmark - epidemic Encephalitis with vertigo
1954 Tallahassee, Florida - epidemic Neuromyasthenia
1954 Seward, Alaska - benign Myalgic Encephalomyelitis (Iceland Disease)
1954 Berlin, Germany - British army - further outbreak of a disease resembling Poliomyelitis
1954 Liverpool, England - outbreak among medical and nursing staff in a local hospital
1954 Johannesburg, South Africa - epidemic Neuromyasthenia
1955 Dalston, Cumbria, England – epidemic and sporadic outbreak of an unusual disease
1955 London, England - Royal Free Hospital - outbreak in staff and patients of Benign Myalgic Encephalomyelitis
1955 Hampstead, London
1955 Perth, Australia - virus epidemic in waves
1955 Gilfac Goch, Wales - outbreak of benign Myalgic Encephalomyelitis
1955 Durban City, South Africa - Addington Hospital. Outbreak among nurses called 'Durban Mystery Disease' also called 'epidemic Neuromyasthenia'
1955 Segbwema, Sierra Leone - outbreak of Encephalomyelitis
1955 Patreksfjorour and Porshofn, Iceland - unusual response to polio vaccine
1955 Northwest London, England - nurses ' residential home - acute Infective Encephalomyelitis simulating poliomyelitis
1956 Ridgefield, Connecticut - epidemic Neuromyasthenia
1956 Punta Gorda Florida - outbreak of epidemic Neuromyasthenia
1956 Newton-le-Willows, Lancashire, England - Lymphocytic Meningoencephalitis with myalgia and rash
1956 Pittsfield and Williamstown, Massachusetts - benign Myalgic Encephalomyelitis
1956 Coventry, England - epidemic malaise, benign Myalgic Encephalomyelitis
1957 Brighton, South Australia - Cocksakie Echo virus Meningitis, epidemic Myalgic Encephalomyelitis
1958 Athens, Greece - nurses ' school - outbreak of benign Myalgic Encephalomyelitis with periostitis and arthopathy noted.
1958 Southwest London, England - reports of sporadic cases of Myalgic Encephalomyelitis
1959 Newcastle Upon Tyne, England - outbreak of benign Myalgic Encephalomyelitis
1961 Basel, Switzerland - sporadic cases of benign Myalgic Encephalomyelitis
1961 New York State - outbreak of epidemic Neuromyasthenia in a convent
1964 Northwest London, England - epidemic malaise, epidemic Neuromyasthenia
1964 Franklin, Kentucky - outbreak of Neuromyasthenia in a factory
1965 Lamarque, Texas, U.S.A. - epidemic Neuromyasthenia. Investigated by Leon-Sotomayor (1969).
1967 Edinburgh, Scotland - sporadic cases resembling benign Myalgic Encephalomyelitis
1968 " Fraidek, Lebanon - benign Myalgic Encephalomyelitis
1969 Brooklyn, New York - State University of New York Downstate Medical Center - epidemic Neuromyasthenia, unidentified symptom complex
1970 Lackland Air Force Base, Texas - epidemic Neuromyasthenia
1970 London, England - Great Ormond Street Hospital for Children - outbreak of Neuromyasthenia among nurses
1975 Sacramento, California - Mercy San Juan Hospital - Infectious Venulitis, epidemic " Phelobodynia
1976 Southwest Ireland - epidemic Neuromyasthenia, benign Myalgic Encephalomyelitis
1977 Dallas – Fort Worth, Texas - epidemic Neuromyasthenia
1979 Southampton, England - Myalgic Encephalomyelitis
1980 West Kilbridge, Ayrshire, Scotland - epidemic Myalgic Encephalomyelitis
1980 San Francisco, California – epidemic persistent flu-like illness
1981 Stirlingshire, Scotland - sporadic Myalgic Encephalomyelitis
1982 West Otago, Dunedin and Hamilton, New Zealand - Myalgic Encephalomyelitis
1983 Los Angeles, California - initial cases of an unknown, chronic symptom complex involving profound "fatigue"
1984 Lake Tahoe Area of California/Nevada - start of a yearlong epidemic involving " over 160 cases of chronic illness eventually characterized as Chronic Fatigue Syndrome
Source: Paradigm Change web site

- see History of ME presented by Lisa Petrison to the CFSAC in 2014
- Dr. Byron Hyde's analysis of ME Epidemics
- Parish JG (1978), Early outbreaks of 'epidemic neuromyasthenia', Postgraduate Medical Journal, Nov;54(637):711-7, PMID: 370810. 'Epidemic Neuromyasthenia' was used to describe ME in the past.



7. Medical and Scientific Textbooks & Books for doctors, nurses and medical students

  • Dr. John Richardson, a medical doctor based in Newcastle in England treated ME patients from many parts of Britain for over 40 years. He developed an expertise in diagnosing the illness, and became one of the world's foremost experts in ME. He even used autopsy results from dead patients to investigate the illness. He found that Enteroviruses and toxins played a major role in ME, and that this led to immune dysfunction, neurological abnormalities, endocrine dysfunction, and over time to increased risk of cardiac failure, cancers, carcinomas, and other organ failure. He wrote a book about his medical experiences called Enteroviral and Toxin Mediated Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. This book is a classic medical book on the illness, and provides an excellent introduction to ME.
  • Myalgic Enephalomyelitis by Celia Wookey; published by Croom Helm Ltd 1986; reprinted 1988 and 1989, Chapman and Hall Ltd 

8. Doctor Training Programs

(i) Doctor Training series - Video Lectures by leading ME / CFS Medical Doctors and Scientific Researchers

  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. 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

 









Slides of Dr. Peterson's lecture at ME/CFS conference in Sweden, 2011


  Dr. Edward J. Conley, D.O. Professor of Family Medicine at Michigan State University. His medical practise and clinic Fatigue, Fibromyalgia and Autoimmune Clinic, Michigan, USA has successfuly treated a few thousand CFS patients since 1994. He wrote this book 'America Exhausted ; Breakthrough treatments of fatigue and fibromyalgia' .The short video below gives an outline of the medical and scientific findings.





  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.

Source: http://www.nightingale.ca/documents/Nightingale_ME_Definition_en.pdf

  • His research paper provides some important insights - Chronic fatigue syndrome is associated with chronic enterovirus infection of the stomach. Chia JK, Chia AY. J Clin Pathol. 2008 Jan;61(1):43-8. Epub 2007 Sep 1. See diagram below:

    Dr. John Chia presents his research findings up to the year 2011 to the National Institutes of Health (NIH) in the USA below:

    Dr. Chia's work and findings are similar to those of John Richardson, a medical doctor who was based in Newcastle in England who treated ME patients from many parts of Britain for over 40 years. He developed an expertise in diagnosing the illness, and became one of the world's foremost experts in ME. He even used autopsy results from dead patients to investigate the illness. He found that Enteroviruses and toxins played a major role in ME, and that this led to immune dysfunction, neurological abnormalities, endocrine dysfunction, and over time to increased risk of cardiac failure, cancers, carcinomas, and other organ failure. He wrote a book about his medical experiences called Enteroviral and Toxin Mediated Myalgic Encephalomyelitis/Chronic Fatigue Syndrome.

    The outbreak in Iceland was important, and provided some vital clues about the illness and the role of Enteroviruses.
    "However, children in epidemic Neuromyasthenia areas responded to poliomyelitis vaccination with higher antibody titres than in other areas not affected by the poliomyelitis epidemic, as if these children had already been exposed to an agent immunologically similar to poliomyelitis virus (Sigurdsson, Gudnad6ttir Petursson, 1958). Thus, the agent responsible for epidemic Neuromyasthenia would appear to be able to inhibit the pathological effects of poliomyelitis infection. When an American airman was affected in the 1955 epidemic and returned home, a similar secondary epidemic occurred in Pittsfield, Massachusetts, U.S.A. (Hart, 1969: Henderson and Shelokov, 1959)."
    Many outbreaks of ME or epidemic Neuromyasthenia worldwide followed an outbreak of polio virus.
    Parish JG (1978), Early outbreaks of 'epidemic neuromyasthenia', Postgraduate Medical Journal, Nov;54(637):711-7, PMID: 370810.

  • Dr. Chia also presents his medical experiences in the videos below:

 

 






  Dr. Lucinda Bateman. Dr. Bateman is a highly respected and well experienced medical doctor who has been treating ME / CFS patients since the late 1990's. She is a medical graduate of the prestigious Johns Hopkins University in Maryland. Dr. Bateman runs an ME/CFS clinic in Utah in the USA which is visited by patients from many states throughout the USA. Her expertise in ME / CFS has been ackowledged by the US Government authorities and national patient organistions in the USA, who have asked her to serve on their committees and expert bodies.



Doctor training and patient information series - video lectures
For medical doctors and patients: Videos 1 - 30

More Video lectures by Dr. Lucinda Bateman & others

 


 

 

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.

The Treatment Center for Chronic Fatigue Syndrome which has successfully treated thousands of ME patients.

- Slides of Dr. Martin Lerner's lecture

Dr. Lerner has developed some useful diagnostic criteria for doctors based on his 20 years experience.
ME/CFS Treatment Resource Guide for Practitioners by Dr. Martin Lerner


Immunology Primer for Practitioners

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



 

  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.

 

 




(ii)
On site training for doctors, consultants and medical students in top ME/CFS clinics and medical practices

The following list contains the top ME and CFS clinics in the world. Some of these clinics may be willing to train other doctors, consultants, and medical students in ME and CFS diagnosis and treatment and in Fibromyalgia diagnosis and treatment. Dr. Derek Enlander, a leading medical doctor and ME & CFS medical expert in New York is working on developing a training academy for training doctors and medical students in this area. This is due to be set up later in 2014.
Medical schools in Universities, and individual doctors and consultants and hospital managers are encouraged to contact these clinics and hospital units and the aformentioned training academy to enquire about the medical training programmes which may be on offer.

North America and South America

  • The Cheney Clinic in the USA . Dr. Paul Cheney has been treating ME and CFS since 1985. He was one of the doctors involved in treating patients in the Lake Tahoe outbreak in the mid 1980's in the USA. He is a highly regarded medical doctor and researcher, and is one of the most knowledgable doctors on ME and CFS in the world.
  • Dr. Daniel Peterson, is a well known ME and CFS doctor and researcher. He has been treating the illness since 1985, including treating victims of the Lake Tahoe outbreak in the 1980's. He has a very comprehensive knowledge of the illness. He currently works in Sierra Internal Medicine Associates 926 Incline Way, Incline Village NV 89452. Tel: (775) 832-0989
  • Dr. Byron Hyde has been involved in ME treatment and research since the mid 1980's and is one of the most experienced ME / CFS doctors in the world. Address: Dr. Byron Hyde, Nightingale Research Foundation, 121 Iona Street, Ottawa, Ontario, Canada. Book an Interview with Dr Byron Hyde on Skype or iChat Video
  • Dr. Lucinda Bateman's medical clinic in Utah, USA. Dr. Bateman is a highly respected and well experienced medical doctor who has been treating ME / CFS patients since the late 1990's. Her expertise in ME / CFS has been ackowledged by the US government authorities and national patient organistions in the USA, who have asked her to serve on their committees and bodies.
  • Dr. Alison Bested, in Toronto, Ontario. She is a highly experienced doctor who has been treating ME and CFS since the late 1990's. She was one of the authors of the Canadian criteria (2003).

Europe

  • Dr. Sarah Myhill's Clinic in Britain. Dr. Sarah Myhill is a distinguished and highly regarded medical doctor and researcher based in Wales. Dr. Myhill has been treating ME patients and researching the illness since the mid 1990's.

Australasia, Asia and Africa

  • Dr Hugh Derham
    Bicton - Healthquest - Point Walter Medical Centre
    322-324 Canning Highway (Cnr Point Walter Rd) Bicton WA 6157. Phone: 08 9438 2299
    Bicton - Bicton Medical Centre
  • Ehlers-Danlos Syndrome (EDS), commonly found in ME and CFS patients
    - The Royal Melbourne hospital familial cancer Centre, affiliated with Melbourne University has a genetics section dedicated to connective tissue diseases including EDS.
    - Royal Childrens Hospital - Professor Ravi Savirayan and Mr Gary Nattrass - recommendation from EDS Australia group
    - Monash Children's Hospital - Professor Sue Piper - recommendation from EDS Australia group
  • POTS commonly found in ME and CFS patients.
    - The clinical pharmacology department at the Austin Hospital which is affiliated with Melbourne University includes Specialist POTS Diagnosis and treatment.
  • Dr. Rosamund Vallings, New Zealand. A medical doctor with over 15 years experience treating ME/CFS patients and researching the illness, and one of the authors of the Canadian Criteria (2003) and International Consensus Criteria (2011)



9. Important Medical and Scientific Facts, Evidence and Research

  1. 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.


  2. Some Biomarkers to look for in ME / CFS

  3. Centers for Disease Control (CDC) USA - 1988 definition of Chronic Fatigue Syndrome (outdated)

  4. Centers for Disease Control (CDC) USA - 1994 definition of Chronic Fatigue Syndrome (outdated)

  5. Listing of Research findings and papers worldwide and categorisation of biological abnormalities and dysfunctions and infections found in ME

    ME/CFS and Medical Abnormalities - Medical Research paper. This paper details many of the biological abnormalities, dysfunctions and infection found in ME and CFS patients and research papers to support this.

    ME/CFS has several subgroups, and each subgroup contains some of the above biological abnormalities, dysfunctions and infections mentioned above.

  6. 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.

    Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study. Hickie I, Davenport T, Wakefield D, Vollmer-Conna U, Cameron B, Vernon SD, Reeves WC, Lloyd A; Dubbo Infection Outcomes Study Group. BMJ. 2006 Sep 16;333(7568):575. Epub 2006 Sep 1.

    Cytokine polymorphisms have a synergistic effect on severity of the acute sickness response to infection. Vollmer-Conna U, Piraino BF, Cameron B, Davenport T, Hickie I, Wakefield D, Lloyd AR; Dubbo Infection Outcomes Study Group. Clin Infect Dis. 2008 Dec 1;47(11):1418-25. doi: 10.1086/592967. 

  7. Ground-breaking Genetic study & other Genetic studies
  8. 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

    Dynamic Modeling for ME/CFS & Gulf War Illness Interventions from ME-CFSCommunity.com on Vimeo.

  9. Subgroups in ME

  10. 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

  11. 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 :

    Primary biological dysfunction and abnormality
    (1)
    ATP, mitochondria & krebs cycle dysfunctions
    The research and clinical work of Dr. Sarah Myhill, Dr. Behan and Dr. Paul Cheney and other doctors and researchers have consistently found this biological abnormality. Deficient ATP produced and deficient recycling of ATP. A rapid shift to anerobic metabolism, build up of lactic acid, purines, muscle pains etc. during and after exercise, and post-exercise malaise commonly found in ME patients. Oxidative & Nitrosative stress damage to inner & outer membranes of mitochondria, cristae, proteins, and DNA of mitochondria. Krebs cycle blocks. Redox failure. Ion channel interruption & dysfunctions affecting Ca. Mg. and K levels.  Deficient  Electron Transport Chain.  Impaired ATP production and Oxidative Phosphorylation. Impaired Translocator protein activity. Acceleration of AMP & glycolysis. This may be due to chronic infections, a chronically activated inflammatory immune system, hypoxia or lack of oxygen in cells, toxins and the high levels of oxidative and nitrosative stress in the illness. Mitochondria dysfunction is the most important factor as the mitochondria and krebs cycle produces ATP, which is fuel or energy for the immune system, the nervous system, the brain, the muscles, the heart, the glands, and all the organs. 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. This may explain Cardiac dysfunctions in ME as this can be related to mitochondria dysfunctions, chronic infections and inflammatory damage over time.

    Secondary biological dysfunctions and abnormalities
    (1) Immune system dysfunctions and deficiencies caused by or accompanied by viral / mycoplasma / pathogen infection (active and latent) and/or toxins. Overactive 2'-5' oligosynthetase pathway, defects in the 2-5a synthetase / RnaseL anti-viral pathway & PKR pathway with effects on immune system function and important ion channels. 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. These abnormalities strongly indicate an immune system which is being activated by chronic viral infection, and the immune system is becoming depleted or defective over time.
    There is an accompanying increase in NF-Kb levels and activity which is pro-inflammatory. Low numbers of NK cells and reduced NK cell function and cytotoxicity. The Rituximab studies show that B cell abnormalities, including excessive levels of defective B cells are a major factor and may perpetuate the illness. This may be the result of a past infection or chronic infection of B cells. Chronic immune system activation with dominance of pro-inflammatory cytokines. T cell abnormalities, including depleted Suppressor cells, CD8 and T reg cell abnormalities and an abnormal CD4/CD8 ratio. Retrovirus infections have been found in ME patients, and these infections can deplete T cell suppressor cells and other T cell subsets. Interferon poisoning in some subgroups of patients, and this is is also linked to viral infections. The overactive immune system is progressing to autoimmunity in some cases, there are HLA abnormalities and other evidence of autoimmunity in many patients. VDR abnormalities which weaken immunity, and increase susceptibility to chronic infection and autoimmune risk (Dr. Marshall, Marshall Protocol). Gastrointestinal abnormalities which contribute to immune system dysfunctions. The immune system has a high demand for ATP in this illness, while ATP is being depleted through mitochondria destruction or degradation.
    (2) the evidence from prior ME epidemics show that infections play a role in most ME patients. Top ME doctors A. Gilliam, Melvin Ramsay, Elizabeth Dowsett, John Richardson of Newcastle-upon-Tyne, W.H. Lyle, Elizabeth Bell, James Mowbray of St Mary’s, Peter Behan and Byron Hyde all believed that the majority of primary M.E. patients fell ill following exposure to an Enterovirus. Dr. John Richardson, a medical doctor based in Newcastle in England treated ME patients from many parts of Britain for over 40 years. He developed an expertise in diagnosing the illness, and became one of the world's foremost experts in ME. He even used autopsy results from dead patients to investigate the illness. He found that Enteroviruses and toxins played a major role in ME, and that this led to immune dysfunction, neurological abnormalities, endocrine dysfunction, and over time to increased risk of cardiac failure, cancers, carcinomas, and other organ failure. He wrote a book about his medical experiences called Enteroviral and Toxin Mediated Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. This book is a classic medical book on the illness, and provides an excellent introduction to ME. Historically, Enterovirus infections mainly target the nervous system, brain, muscles and intestines, all of which abnormal in ME patients.
    In subgroups, there is evidence of Retrovirus infection and Herpes infections and changes to cell structures and to T cell subsets. There is evidence for 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. There are high levels of oxidative and nitrosative stress and inflammation, and cellular destruction, arising from chronic immune system activation, infections, immune system and cellular dysfunctions, and toxins.
    (3) 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 adversely affects many other body functions.
    (4)
    Dr. Paul Cheney has found toxic build up in the body in many patients. Flow reversal in the liver and the brain. Chronic Cerbral Spinal Venous Insufficiency (CCSVI). Chronic He patic 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, etc.. (Dr. Paul Cheney)
    (5) methylation cycle blocks and glutathione deficiency. 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.
    (6) 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.

    All of these 7 factors are the core of the illness, the perpetuating factors over time. Subgroups will contain most of the 7 factors mentioned above. There are slight differences between patient groups which are due to subgroups, genetic differences, different environment exposures and toxins, different infectious agents, different microbiome and metagenome status, and different diet and lifestyles. These abnormalities and dysfunctions have a domino effect on other cellular functions and body functions leading on to several other dysfunctions, and to severe illness.

  12. The seminal scientific research paper on the Lake Tahoe epidemic in the USA in the mid 1980's and the origin of the term CFS
    Buchwald, D., Cheney, P., Peterson, D., Henry, B., Wormsley, S., Geiger, A., Ablashi, D., Komaroff, D.etc. 1992. A chronic illness characterized by fatigue, neurologic and immunologic disorders, and active Human Herpesvirus Type 6 Infection. Annals of Internal Medicine 1116: 103-13.

  13. Dr. Paul Cheney and heart abnormality findings
    - Video lecture by Dr. Paul Cheney on cardiomyopathy findings in ME

  14. (a) STAT1-alpha and p53 Deficiencies are Found in Patients with Chronic Fatigue Syndrome (2003)

    (b) Total Exposure: Expanded Model for RNase L Fragmentation in CFS Uncovered; The National CFIDS Foundation Announces the Use of Elastase Inhibitors as a Potential Treatment for CFS Patients (2003)

  15. Current research priorities in Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME):disease mechanisms, a diagnostic test and specific treatments. Jonathan R Kerr, Peter Christian, Andrea Hodgetts, Paul R Langford, Lakshmi D Devanur, Robert Petty, Beverley Burke, Lindsey I Sinclair, Selwyn C M Richards, Jane Montgomery, Clare McDermott, Tim J Harrison, Paul Kellam, David J Nutt and Stephen T Holgate. Journal of Clinical Pathology 2007;60(2):113-6.

  16. Hooper M (May 2007). "Myalgic encephalomyelitis: a review with emphasis on key findings in biomedical research". J. Clin. Pathol. 60 (5): 466–71

  17. 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.

  18. National Institutes of Health (NIH) in the USA - State of the Knowledge Workshop on ME/CFS Research (2011)

  19. Maes et al. Model of ME - Oxidative and Nitrosative stress, Immune dysfunctions, Infections and Neurological dysfunction


  20. Neurological model of ME by Jason et al.
    An Etiological Model for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. Jason LA, Sorenson M, Porter N, Belkairous N. Neuroscience & Medicine, 2011, 2, 14-27

  21. Lake Tahoe Epidemic (1984) Medical and Scientific Findings

  22. Conferences around the world

  23. Medical and Scientific Databases
    Pubmed databases
    - Query of multiple databases using term 'chronic fatigue syndrome'
    - Query of multiple databases using term 'myalgic encephalomyelitis'
    - Query of multiple databases using term 'chronic fatigue immune dysfunction syndrome'
    - Query of multiple databases using term 'post-viral fatigue syndrome'
  24. - Google Scholar using term 'chronic fatigue syndrome'
    - Google Scholar using term 'myalgic encephalomyelitis'
    The Cochrane Collaboration databases - http://www.cochrane.org/about-us/evidence-based-health-care/webliography/databases

  25. Immunology Primer for Practitioners

    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


  26. Chronic fatigue syndrome is associated with chronic enterovirus infection of the stomach. John K S Chia, Andrew Y Chia.
    J Clin Pathol 2007;0:1–6. doi: 10.1136/jcp.2007.050054

  27. Chronic Fatigue Syndrome: A Biological Approach By Patrick Englebienne and Dr. Kenny De Meirleir

  28. Methylation cycle block and glutathione depletion : analysis by Richard Van Konynenburg

  29. The CFS Advisory Committee - US Department of Health, USA

  30. New Research suggesting intestinal disorders and excessive production of toxins with negative effects on mitochondria and Krebs cycle

  31. Conclusions of leading doctors in the field

  32. Chronic Fatigue Syndrome linked to HHV-6 virus.

  33. Medical and Scientific Databases

  34. Chronic Ciguatera poisoning in 80 - 95% of CFS cases

  35. Toxline, run by the National Institutes of Health has several references linking chronic fatigue syndrome to toxins

  36. Medical and Scientific Books for doctors, nurses and medical students

10. Scientific Models of the Illness

 


11. Bogus Treatments

There have been many research findings and clinical findings which show the harmful effects of CBT and GET and exertion in ME / CFS patients. In addition to this, the inefficacy of CBT and GET in terms of lack of full recovery, lack of return to normal function, lack of normal health (prior to illness), lack of return to sporting and other social activities, lack of return to full time employment or full time education or training has also been shown. This research is listed in the links below

 

12. National and International Conferences and Seminars

.

13. Special Training Programmes in Universities, Hospitals, Clinics and Institutes


14. The most successful ME medical clinics in the world

North America and South America

  • Dr. John Chia is a medical doctor with expertise in treating ME and CFS. He is Assistant Professor at the UCLA School of Medicine and President of EV Med Research, Director of the Enterovirus Foundation and is an international expert on Enteroviruses and their role in ME and CFS, and other diseases. His work is well acknowledged in North America and Europe.
    Address: 23560 Crenshaw Blvd #101, Torrance, CA 90505, United States of America.
    Phone:+1 310-784-5880
  • The Cheney Clinic in the USA . Dr. Paul Cheney has been treating ME and CFS since 1985. He was one of the doctors involved in treating patients in the Lake Tahoe outbreak in the mid 1980's in the USA. He is a highly regarded medical doctor and researcher, and is one of the most knowledgable doctors on ME and CFS in the world.
  • Dr. Daniel Peterson, is a well known ME and CFS doctor and researcher. He has been treating the illness since 1985, including treating victims of the Lake Tahoe outbreak in the 1980's. He has a very comprehensive knowledge of the illness. He currently works in Sierra Internal Medicine Associates 926 Incline Way, Incline Village NV 89452. Tel: (775) 832-0989
  • Dr. Byron Hyde has been involved in ME treatment and research since the mid 1980's and is one of the most experienced ME / CFS doctors in the world. Address: Dr. Byron Hyde, Nightingale Research Foundation, 121 Iona Street, Ottawa, Ontario, Canada. Book an Interview with Dr Byron Hyde on Skype or iChat Video
  • Dr. Lucinda Bateman's medical clinic in Utah, USA. Dr. Bateman is a highly respected and well experienced medical doctor who has been treating ME / CFS patients since the late 1990's. Her expertise in ME / CFS has been ackowledged by the US government authorities and national patient organistions in the USA, who have asked her to serve on their committees and bodies.
  • Dr. Alison Bested, in Toronto, Ontario. She is a highly experienced doctor who has been treating ME and CFS since the late 1990's. She was one of the authors of the Canadian criteria (2003).

Europe

  • Dr. Sarah Myhill's Clinic in Britain. Dr. Sarah Myhill is a distinguished and highly regarded medical doctor and researcher based in Wales. Dr. Myhill has been treating ME patients and researching the illness since the mid 1990's.

Australasia, Asia and Africa

  • Dr Hugh Derham
    Bicton - Healthquest - Point Walter Medical Centre
    322-324 Canning Highway (Cnr Point Walter Rd) Bicton WA 6157. Phone: 08 9438 2299
    Bicton - Bicton Medical Centre
  • Ehlers-Danlos Syndrome (EDS), commonly found in ME and CFS patients
    - The Royal Melbourne hospital familial cancer Centre, affiliated with Melbourne University has a genetics section dedicated to connective tissue diseases including EDS.
    - Royal Childrens Hospital - Professor Ravi Savirayan and Mr Gary Nattrass - recommendation from EDS Australia group
    - Monash Children's Hospital - Professor Sue Piper - recommendation from EDS Australia group
  • POTS commonly found in ME and CFS patients.
    - The clinical pharmacology department at the Austin Hospital which is affiliated with Melbourne University includes Specialist POTS Diagnosis and treatment.
  • Dr. Rosamund Vallings, New Zealand. A medical doctor with over 15 years experience treating ME/CFS patients and researching the illness, and one of the authors of the Canadian Criteria (2003) and International Consensus Criteria (2011)

 

 

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