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.

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 Centers for Disease Control (CDC) USA - 1988 definition of Chronic Fatigue Syndrome (outdated)

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 Centers for Disease Control (CDC) USA - 1994 definition of Chronic Fatigue Syndrome (outdated)

  4. 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.

  5. 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. 

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

  8. Subgroups in ME

  9. 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

  10. Historical Facts and Epidemics
    - Outbreak at the Royal Free. E.D Acheson. The Lancet, Volume 266, Issue 6886, Pages 394 - 395, 20 August 1955.
    - ME Epidemics
    - A new Clinical Entity ? The Lancet, 1956
    - Benign myalgic encephalomyelitis Lancet 1957
    - 'Epidemic Myalgic Encephalomyelitis' British Medical Journal
    - The Clinical Syndrome Variously Called Benign Myalgic Encephalomyelitis, Iceland Disease and Epidemic Neuromyasthenia. Dr. Acheson, American Journal of Medicine, 1959.
    - Parish JG (1978), Early outbreaks of 'epidemic neuromyasthenia', Postgraduate Medical Journal, Nov;54(637):711-7, PMID: 370810
    - Lake Tahoe Epidemic (1984) Medical and Scientific Findings

  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 :

    (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 cell abnormalities, including CD8, T reg cell abnormalities and an abnormal CD4/CD8 ratio. HLA abnormalities, some evidence of autoimmunity, with strong indications of B cell abnormalities. 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 and chronic infection risk.
    (2) in subgroups, 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 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) 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.
    (5)
    ATP, mitochondria & krebs cycle dysfunctions and abnormalities. Deficient ATP produced. Abnormal mitochondria destruction and abnormal mitochondria membranes, structures and electron transport, which adversely affects the entire body. This may be due to chronic infections, a chronically activated inflammatory immune system, toxins and the high levels of oxidative and nitrosative stress in the illness. 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 ATP, for fuel. 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 rapid shift to anerobic metabolism, build up of lactic acid, purines, muscle pains etc. during and after exercise, and the post-exercise malaise commonly found in ME patients. Cardiac dysfunctions in ME are related to these mitochondria dysfunctions, chronic infections and inflammatory damage over time.
    (6) 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.
    (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 damage and 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

  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. Some Biomarkers to look for in ME / CFS

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

  15. (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)

  16. 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.

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

  18. 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.

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

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


  21. 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

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

  23. Conferences around the world

  24. 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'
  25. - 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

  26. 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


  27. 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

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

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

  30. 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

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

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

  33. Conclusions of leading doctors in the field

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

  35. Medical and Scientific Databases

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

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

  38. Medical and Scientific Books for doctors, nurses and medical students
  39. Lectures by Leading ME / CFS Medical Doctors and Scientific Researchers

  40.   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.



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      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

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

     


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      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.

    • Doctor training series - video lectures
      For medical doctors and medical professionals videos 1 - 20 : http://www.youtube.com/watch?v=X-uwSxoUqTY

    • Commentary & Discussion
      Infections and immune system abnormalities in ME / CFS

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      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. 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. 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 of the ilness.
    ME/CFS Treatment Resource Guide for Practitioners by Dr. Martin Lerner


      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. 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. 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.


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      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.

     

     


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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.

See amounts spent on research for each illness, including ME/CFS from 2009 - 2013 at http://report.nih.gov/categorical_spending.aspx

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


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