M.E. (MYALGIC ENCEPHALOMYELITIS) BASIC INFORMATION

Discussion in 'Fibromyalgia Main Forum' started by tansy, Apr 16, 2008.

  1. tansy

    tansy New Member

    Anglia ME Action (UK). April 2008.

    “…there are now over 4,000 published studies that show underlying biomedical
    abnormalities in patients with this illness. It’s not an illness that people
    can simply imagine that they have and it’s not a psychological illness. In
    my view, that debate, which has waged for 20 years, should now be over”.
    [Professor Anthony Komaroff, Harvard Medical School: Speaking at the USA
    Government CDC (Centers for Disease Control and Prevention) press conference
    on 3 November 2006. Also see endnote 1 below]
    www.cdc.gov/od/oc/media/transcripts/t061103.htm


    CONTENTS:
    1. What ME is and What it is Not.
    2. ME Recovery & Early Death Rates.
    3. Internationally Respected ME Guidelines & Expert Comment.
    4. Disinformation, Controversy and Vested Interests.
    5. Concerns About UK NICE / NHS Guidelines and the Evidence Base.
    6. The Gibson Parliamentary Group Findings.
    7. Biomedical Evidence Summaries & Key Scientific Papers / Books.
    8. Websites / Updates.
    9. Endnotes.



    1. WHAT ME IS AND WHAT IT IS NOT:

    Myalgic Encephalomyelitis or M.E. (myalgic= muscle-pain, encephalo= brain,
    myelitis= spinal-cord, encephalomyelitis= inflammation of brain &
    spinal-cord) is a long-term organic/biomedical illness and is NOT the same
    thing as 'Chronic Fatigue', short-term post viral syndrome or 'myalgic
    encephalopathy'[2] and it is NOT a psychiatric or behavioral illness. ME has
    been in the medical literature since the 1930s and classed as a physical
    disease by the WHO (World Health Organisation) International Classification
    of Diseases (ICD) since 1969 - currently listed at WHO ICD-10-G93.3 as a
    Multi-System organic/physical NEUROLOGICAL Disorder with similarities to
    Multiple-Sclerosis and Post-Polio-Syndrome. Documented clinical/research
    abnormalities (see section 7 below) include: immune system/infectious;
    cardiovascular, endocrine and digestive systems; muscle, cellular,
    mitochondrial and genetic function and integrity; oxidative stress; central
    nervous system - including brain and spinal cord; end organs. For
    symptoms/signs and diagnostic information and discussion see section 3
    below.

    To complicate matters, the term ‘Chronic Fatigue Syndrome’ has been much
    abused by vested interests trying to re-label biomedical WHO-recognized
    ME/CFS/PVFS as a psychiatric disorder doing so allows insurance companies
    and benefits agencies to potentially save billions of £/$ across the globe.
    This is hugely impacting upon public as well as private health & welfare
    policy - causing a recent UK Parliamentary inquiry group to caution:

    “Given the vested interest private medical insurance companies have in
    ensuring CFS/ME remain classified as a psychosocial illness there is blatant
    conflict of interest here. The Group find this to be an area for serious
    concern and recommends a full investigation of this possibility by the
    appropriate standards body.”
    [Page 30 of the joint Commons/Lords Gibson Parliamentary Inquiry Group
    (GSRME) Report see section 6 below].
    www.erythos.com/gibsonenquiry/index.html

    Thus, many biomedical ME campaigners/clinicians if they use the misleading
    term ‘Chronic Fatigue Syndrome/CFS’ at all, preface it with ‘ICD’: to read
    ‘ICD- Chronic Fatigue Syndrome’ or ‘ICD-CFS’ in an attempt to ensure it is
    understood that they are referring to the biomedical disorder classified by
    the WHO at ICD 10-G93.3. See Professor Malcolm Hooper's et al document
    entitled: What is ME? What is CFS? Information for Clinicians and Lawyers.
    www.meactionuk.org.uk/What_Is_ME_What_Is_CFS.htm
    And see:
    http://meactionuk.org.uk/G93-3-ICD-10-compilation.jpg
    http://meactionuk.org.uk/G93-3-ICD-10-index-closeup.jpg
    www.who.int/classifications/icd/en/
    Also see discussion on the controversial United States CDC disease labelling
    / classification at:
    www.co-cure.org
    www.cfids-me.org/
    www.meresearch.org.uk/index.html

    ME is a serious long-term and life changing disease with various
    viruses/infectious-agents and toxic chemicals jointly implicated in
    causation. ME leads to a shorter life-span in a significant minority of
    patients (see section 2 below). Some viruses and other bugs have always been
    able to trigger multi-system neurological diseases (e.g. Polio). However,
    with the massive growth in environmental toxic chemicals since the 1940s,
    the background load on human immune, nervous, endocrine and
    anti-oxidant/de-toxing enzyme systems has increased exponentially. ME has
    similarities to Gulf War Syndrome and ME patients have been called the
    'Canaries' of our increasingly polluted planet that (should) serve as a
    warning to modern industrial society.
    See Professor Malcolm Hooper's peer-reviewed overview paper (regularly
    updated online) entitled:
    Myalgic Encephalomyelitis: A Review With Emphasis on Key Findings in
    Biomedical Research. Journal of Clinical Pathology; 2007; 60:466-471. Doi:
    10.1136/jcp.2006.042408.
    http://jcp.bmj.com/cgi/content/abstract/60/5/466

    For a biomedical research findings overview up to 2005 see:
    Illustrations of Clinical Observations and International Research Findings
    from 1955 to 2005 that demonstrate the organic aetiology of Myalgic
    Encephalomyelitis / Chronic Fatigue Syndrome. Malcolm Hooper, Eileen
    Marshall, Margaret Williams (For Gibson Inquiry):
    www.meactionuk.org.uk/Organic_evidence_for_Gibson.doc

    Also see: Essential investigations for people with ME/CFS? Margaret
    Williams. January 2008.
    http://meactionuk.org.uk/Essential_investigations_for_people_with_ME.htm

    There has been much misunderstanding and downright deceit (see section 3
    below) over what ME is and is not. See Professor Malcolm Hooper's et al
    document entitled:
    What is ME? What is CFS? Information for Clinicians and Lawyers.
    www.meactionuk.org.uk/What_Is_ME_What_Is_CFS.htm

    Also see: The Late Effects of ME - Can they be distinguished from the
    Post-polio syndrome? By Consultant Microbiologist and ME Specialist, Dr
    Elizabeth (Betty) Dowsett:
    www.ott.zynet.co.uk/polio/lincolnshire/library/dowsett/lateeffectsme.html



    2. ME RECOVERY & EARLY DEATH RATES:

    ME has a very low patient recovery rate [3] and Consultant Microbiologist &
    ME specialist Dr Elizabeth Dowsett stated that some 10% of patients die
    early due to complications from ME - organ failure and other factors[4]. It
    is believed that a great number of ME-related early deaths due to end-organ
    failure etc are not picked up because they are simply put down to
    heart-failure etc per se and not properly connected with ME as the
    underlying cause. Moreover, it is arguable the majority of life-long ME
    patients have some life span reduction due to increased oxidative stress
    etc.

    See Professor Leonard Jason's et al paper entitled: Causes of Death Among
    Patients With Chronic Fatigue Syndrome. DePaul University, Chicago,
    Illinois, USA Health Care for Women International, 27:615626, 2006.
    Routledge. Copyright © Taylor & Francis Group, LLC. ISSN: 0739-9332 print /
    1096-4665 online: DOI: 10.1080/07399330600803766
    www.ingentaconnect.com/content/routledg/uhcw/2006/00000027/00000007/art00005
    ?crawler=true

    The tragic death by ME of 32 year old Sophia Mirza was recently recorded by
    a UK coroner and was the result of organ failure and alleged psychiatric
    mistreatment/neglect. See:
    The Inquest of Sophia Mirza. Sue Waddle, Invest in ME:
    www.investinme.org/Article-050%20Sophia%20Wilson%2001-RIP.htm
    Inquest Implications:
    www.meactionuk.org.uk/Inquest_Implications.htm



    3. INTERNATIONALLY RESPECTED ME GUIDELINES & EXPERT COMMENT:

    See: Myalgic Encephalomyelitis / Chronic Fatigue Syndrome: A Clinical Case
    Definition and Guidelines for Medical Practitioners - An Overview of the
    Canadian Consensus Document by Professor Bruce M Carruthers and Dr Marjorie
    I Van de Sande.
    UK NHS Clinician Endorsed / UK A4 Format - Version:
    http://data.eastanglia.me.uk/pdfs/Canadian_ME_Overview_A4.pdf

    See: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working
    Case Definition, Diagnostic and Treatment Protocols (‘Canadian Criteria’
    Full Version). Bruce M. Carruthers, Anil Kumar Jain, Kenny L. De Meirleir,
    Daniel L. Peterson, Nancy G. Klimas, A. Martin Lerner, Alison C. Bested,
    Pierre Flor-Henry, Pradip Joshi, A. C. Peter Powles, Jeffrey A. Sherkey,
    Marjorie I. van de Sande. Journal of Chronic Fatigue Syndrome. Volume 11,
    Number 1, 2003. At:
    http://fm-cfs.ca/CFS-Protocol.pdf

    See: Chronic Fatigue Syndrome: Assessment and Treatment of Patients with
    ME/CFS: Clinical Guidelines for Psychiatrists. Eleanor Stein MD FRCP(C).
    http://fm-cfs.ca/Psychiatry-overview.pdf

    See: The Nightingale Definition of Myalgic Encephalomyelitis (M.E.).
    Dr Byron Hyde, Nightingale Foundation, Toronto, Canada. Available at:
    http://www.nightingale.ca/documents/Nightingale_ME_Definition_en.pdf

    The Complexities of Diagnosis. Byron Hyde. In: Handbook of Chronic Fatigue
    Syndrome. Leonard A Jason et al. John Wiley & Sons, Inc. 2003.
    www.nightingale.ca/documents/ComplexitiesofDiagnosis.pdf

    Dr Melvin Ramsay: Definitive Description of ME:
    http://meactionuk.org.uk/ramsey.html

    Dr Andrew Wallis: Research Description of ME:
    http://meactionuk.org.uk/definition.html



    4. DISINFORMATION, CONTROVERSY AND VESTED INTERESTS:

    For an introduction to matters see K Short's paper entitled: I SEE NO SHIPS:
    New Labour Health Policy and Myalgic Encephalomyelitis (ME). Available
    online at:
    www.cfids-me.org/angliameaction/ships.html

    For the best and indispensable detailed overview of matters see: CORPORATE
    COLLUSION. Professor Malcolm Hooper, Eileen Marshall & Margaret Williams. A
    MUST READ document.
    www.meactionuk.org.uk/Corporate_Collusion_2.htm

    See: The Mental Health Movement: Persecution of Patients? A Consideration of
    the Role of Professor Simon Wessely and Other Members of the “Wessely
    School” in the Perception of Myalgic Encephalomyelitis (ME) in the UK.
    Background Briefing for the House of Commons Select Health Committee.
    Professor Malcolm Hooper. At:
    www.meactionuk.org.uk/SELECT_CTTEE_FINAL_VERSION.htm

    See: Proof Positive? Evidence of the deliberate creation via social
    constructionism of “psychosocial” illness by cult indoctrination of State
    agencies, and the impact of this on social and welfare policy. Eileen
    Marshall, Margaret Williams 30th August 2005. At:
    www.meactionuk.org.uk/PROOF_POSITIVE.htm

    See: Concerns About Commercial Conflict of Interest Underlying the DWP
    Handbook Entry on ME/CFS. Hooper, Marshall & Williams.
    www.meactionuk.org.uk/HOOPER_CONCERNS_ABOUT_A_COMMERCIAL_CONFLICT_OF_INTERES
    T.htm

    See: Wessely, Woodstock and Warfare? Margaret Williams. 9th August 2007. At:
    www.meactionuk.org.uk/Wessely_Woodstock_and_Warfare.htm

    See: Defiance of Science: A comparison of quotations about ME/CFS from the
    MERUK International Research Conference held on 25.05.07 in Edinburgh with
    quotations from the Wessely School (who call it “CFS/ME”). Malcolm Hooper,
    Margaret Williams. 12th July 2007
    www.meactionuk.org.uk/Defiance_of_Science.htm

    See: A New and Simple Definition of Myalgic Encephalomyelitis and a New and
    Simple Definition of Chronic Fatigue Syndrome & A Brief History of Myalgic
    Encephalomyelitis And An Irreverent History of Chronic Fatigue Syndrome. Dr
    Byron Hyde, Nightingale Foundation, Toronto, Canada. Available at:
    http://www.investinme.org/Documents/PDFdocuments/Byron%20Hyde%20Little%20Red
    %20Book%20for%20www.investinme.org.pdf

    Coercion As Cure? Eileen Marshall & Margaret Williams. 21st September 2007.
    Available at:
    http://meactionuk.org.uk/COERCION_AS_CURE.htm

    Deliberate Dichotomy? Eileen Marshall & Margaret Williams. 10 November 2004.
    Available at:
    www.meactionuk.org.uk/Deliberate_Dichotomy.htm

    See book: Skewed: Psychiatric Hegemony and the Manufacture of Mental Illness
    in Multiple Chemical Sensitivity, Gulf War Syndrome, Myalgic
    Encephalomyelitis and Chronic Fatigue Syndrome by Martin J Walker, Slingshot
    Publications, ISBN: 0-9519646-4X.
    www.slingshotpublications.com/skewed.html

    See book: Osler’s Web; Inside the Labyrinth of the Chronic Fatigue Syndrome
    Epidemic. Hillary Johnson. New York, Crown, 1996. 051770353X
    www.amazon.com/Oslers-Web-Labyrinth-Syndrome-Epidemic/dp/051770353X

    To put what has happened to ME patients into overall context see the two
    Films/DVDs entitled:
    ‘Sicko’ (Michael Moore) and ‘The Corporation’ at:
    www.michaelmoore.com/sicko/index.html
    www.thecorporation.com/



    5. CONCERNS ABOUT UK NICE / NHS GUIDELINES AND THE EVIDENCE BASE:

    On the highly questionable behavioural approach to ICD-ME (now officially
    adopted in the UK); Dr Bruce Carruthers, Senior Fellow of the Canadian Royal
    College and principle lead of the international expert team that produced
    the highly respected ME Clinical Case Definition, states:

    “Supporters suggest that ‘ideally general practitioners should diagnose CFS
    and refer patients to psychotherapists for CBT without detours to medical
    specialists as in other functional somatic syndromes’. Proponents ignore the
    documented pathophysiology of ME/CFS, disregard the reality of patient’s
    symptoms, blame them for their illness and withhold medical treatment. Their
    studies have often included patients who have chronic fatigue but excluded
    more severe cases as well as those who have other symptoms that are part of
    the clinical criteria of ME/CFS.”
    [Underline emphasis added. See: SHS Box on page 10 of (and indeed the whole
    document): Myalgic Encephalomyelitis / Chronic Fatigue Syndrome: A Clinical
    Case Definition and Guidelines for Medical Practitioners - An Overview of
    the Canadian Consensus Document by Professor Bruce M Carruthers and Dr
    Marjorie I Van de Sande. UK NHS Clinician Endorsed / UK A4 Format
    Version]: http://data.eastanglia.me.uk/pdfs/Canadian_ME_Overview_A4.pdf

    And the Parliamentary Gibson Group Inquiry Report (see section 6 below)
    unequivocally states:

    “The Group found that the international criteria paid far greater attention
    to the symptoms of CFS/ME while the Oxford criteria focus very little on any
    symptoms other than long term tiredness. There is concern that the broad
    spectrum of patients who may be included in these criteria may lead to
    inaccurate results in patient studies of CFS/ME.” [Page 12].

    AN ABSOLUTE MUST READ document on this matter is:
    Inadequacy of the York (2005) Systematic Review of the CFS/ME Medical
    Evidence Base. Comment on Section 3 of: The diagnosis, treatment and
    management of chronic fatigue syndrome (CFS)/(ME) in adults and children,
    Work to support the NICE Guidelines... Anne-Marie Bagnall, et al, Centre for
    Reviews and Dissemination, University of York. 2005. Professor Malcolm
    Hooper & Horace Reid, January 2006. From:
    www.meactionuk.org.uk/FINAL_on_NICE_for_Gibson.html

    Another MUST READ document is:
    Some Concerns about the National Institute for Health &Clinical Excellence
    (NICE) Draft Guideline issued on 29th September 2006 on Diagnosis and
    Management of Chronic Fatigue Syndrome / Myalgic Encephalomyelitis in Adults
    and Children. Margaret Williams / 25% ME:
    www.meactionuk.org.uk/Concerns_re_NICE_Draft.pdf

    And see: ADDENDUM to Some Concerns about the NICE Draft Guideline on
    “CFS/ME”. Margaret Williams. At:
    www.meactionuk.org.uk/ADDENDUM_to_Response_to_NICE.htm



    6. THE GIBSON PARLIAMENTARY GROUP FINDINGS:

    See The Report of the UK Gibson Group on the Scientific Research into ME
    (GSRME), entitled: Inquiry into the Status of CFS/ME and Research into
    Causes and Treatment. November 2006. At the GSRME House of Commons Website:
    www.erythos.com/gibsonenquiry/index.html

    NOTE: The Gibson Group was a cross party committee of inquiry with members
    from both houses of the UK parliament, led by Dr Ian Gibson MP, that
    reported in November 2006. Although the report was rightly criticised for
    not being as clear-sighted and robust as it should have been it nevertheless
    made some important and very telling comments and recommendations [underline
    emphasis added]:

    “In Britain, there has been a clear historical bias towards research into
    the psychosocial explanations of CFS/ME. This is despite Parliament
    recognizing ME as a physical illness in a Private Members Bill, the ME
    Sufferers Bill, in 1988.” [Page 9].

    “There is a commonly held belief circulating that the World Health
    Organisation (WHO) categorises CFS/ME under both neurology (i.e. disorders
    of the nervous system) and neurasthenia (mental and behavioural disorders or
    other neurotic disorders). Indeed this is reported in medical textbooks. The
    Group found this assertion to be incorrect. The International Classification
    of Diseases (ICD-10) document produced by the WHO characterizes Post-viral
    Fatigue Syndrome (PVS) and ME under Section G: ‘Diseases of the Nervous
    System.’ G93.3.” [Page 9].

    “The Group found that the international criteria paid far greater attention
    to the symptoms of CFS/ME while the Oxford criteria focus very little on any
    symptoms other than long term tiredness. There is concern that the broad
    spectrum of patients who may be included in these criteria may lead to
    inaccurate results in patient studies of CFS/ME. The Group feels that there
    is room for a further review of the criteria which should be updated, in the
    light of the peer reviewed and evidence based research done both
    internationally and in the UK in the last 15 years.” [Page 12].

    “There have been numerous cases where advisors to the DWP have also had
    consultancy roles in medical insurance companies. Particularly the Company
    UNUM Provident. Given the vested interest private medical insurance
    companies have in ensuring CFS/ME remain classified as a psychosocial
    illness there is blatant conflict of interest here. The Group find this to
    be an area for serious concern and recommends a full investigation of this
    possibility by the appropriate standards body. It may even be that
    assessment by a medical ‘expert’ in a field of high controversy requires a
    different methodology of benefit assessment.” [Page 30].

    “The Canadian Criteria are a useful contribution to the attempt to define
    the clinical condition of CFS/ME.” [Page 31].

    “There are arguments relating to whether ME and CFS are separate illnesses.
    Opinion on this matter is split, both within the Group and in wider society.
    The only way to resolve this dispute is through a massive further research
    programme involving large patient groups.” [Page 31].

    “The Group was very interested in the international evidence submitted and
    concerned as to why this evidence has not been seriously examined in the UK.
    The Group calls for a further Inquiry into the Scientific Evidence for
    CFS/ME by the appropriately qualified professionals. This Inquiry should be
    commissioned by government undertaken by an independent panel of scientific
    and medical experts, including virologists, immunologists, biochemists etc
    who can objectively assess the relevance and importance of the international
    scientific data. There is a perception that much of the international
    research is not peer reviewed. The Group has found this to not always be the
    case and has received research published in UK and international journals.”
    [Page 31].

    “ME and CFS have been defined as neurological illnesses by the World Health
    Organisation. Various clinical and epidemiological research studies in
    countries around the world have suggested CFS/ME to have a biomedical cause.
    The UK has not been a major player in the global progress of biomedical
    research into CFS/ME. Although some interesting biomedical research has been
    done in the UK precedence has been given to psychological research and
    definitions. The Group believes the UK should take this opportunity to lead
    the way in encouraging biomedical research into potential causes of CFS/ME.
    There is a great deal of frustration amongst the CFS/ME community that the
    progress made in the late 1980s and early 1990s toward regarding CFS/ME as a
    physical illness has been marginalised by the psychological school of
    thought.” [Page 32].

    “The Research areas defined by the CMO Report in 2002 have not been
    addressed. Further research is the single most important area in this
    field.” [Page 33].

    “There is a need for diagnostic tests but this is likely to be dependent on
    a greater understanding of possible causes.” [Page 33].

    “There is a need to undertake further research of post viral infective cause
    in carefully controlled studies.” [Page 33].
    “The evidence for a toxin aetiology requires critical and controlled
    studies. This includes research into possible causes, like pesticides.”
    [Page 33].

    “Much more study should be centred on the reasons why some individuals are
    susceptible to developing the illness or illnesses. These include further
    follow-up of immunological, endocrinological and neurological disturbances.”
    [Page 33].

    “The MRC should call for research into this field recognising the need for a
    wide ranging profile of research. The committee would like to see a similar
    arrangement to the AIDS programme funded previously by the MRC.” [Page 33].

    “An independent scientific committee must examine the wealth of
    international research data. To exclude it from the debate is a great
    injustice to patients.” [Page 33].

    “We recommend that this condition be recognised as one which requires an
    approach as important as heart disease or cancer. There is no compelling
    evidence it is purely psychosocial.” [Page 33].

    “This group believes that the MRC should be more open-minded in their
    evaluation of proposals for biomedical research into CFS/ME and that, in
    order to overcome the perception of bias in their decisions, they should
    assign at least an equivalent amount of funding (£11 million) to biomedical
    research as they have done to psychosocial research. It can no longer be
    left in a state of flux and these patients or potential patients should
    expect a resolution of the problems with only an intense research programme
    can help resolve. It is an illness whose time has certainly come.” [Page 34]



    7. BIOMEDICAL EVIDENCE SUMMARIES & KEY SCIENTIFIC PAPERS / BOOKS:

    First; to again Quote Harvard's Professor Anthony Komaroff:

    “…there are now over 4,000 published studies that show underlying biomedical
    abnormalities in patients with this illness. It’s not an illness that people
    can simply imagine that they have and it’s not a psychological illness. In
    my view, that debate, which has waged for 20 years, should now be over”.
    [Professor Anthony Komaroff, Harvard Medical School: Speaking at the USA
    Government CDC (Centers for Disease Control and Prevention) press conference
    on 3 November 2006. Also see endnote 1 below]
    www.cdc.gov/od/oc/media/transcripts/t061103.htm

    Excellent regularly updated peer-reviewed overview paper - see:
    Myalgic encephalomyelitis: a review with emphasis on key findings in
    biomedical research. Professor M Hooper. J Clin Pathol 2007; 60:466471.
    Doi: 10.1136/jcp.2006.042408.
    http://jcp.bmj.com/cgi/content/abstract/60/5/466

    For a biomedical research overview up to 2005 see:
    Illustrations of Clinical Observations and International Research Findings
    from 1955 to 2005 that demonstrate the organic aetiology of Myalgic
    Encephalomyelitis / Chronic Fatigue Syndrome. Malcolm Hooper, Eileen
    Marshall, Margaret Williams (For Gibson Inquiry):
    www.meactionuk.org.uk/Organic_evidence_for_Gibson.doc

    For updates on ME and related research - including downloadable pdf
    abstracts/comments on all published papers see: M.E. Research UK (MERUK): A
    Scotland based biomedical ME research/ information organization led by Dr
    Vance Spence, Honorary Senior Research Fellow, University of Dundee Medical
    School:
    www.meresearch.org.uk/

    Also, for international research & ME issues updates see Co-Cure at:
    www.co-cure.org/

    Seven Genomic Subtypes of Chronic Fatigue Syndrome / Myalgic
    Encephalomyelitis (CFS/ME): a detailed analysis of gene networks and
    clinical phenotypes. Jonathan Kerr et al. Journal of Clinical Pathology. 5
    Dec 2007. Doi: 10.1136/jcp.2007.053553.
    http://jcp.bmj.com/cgi/content/abstract/jcp.2007.053553v1

    Review: Chronic Fatigue Syndrome. L D Devanur & J R Kerr. Journal of
    Clinical Virology xxx (2006) xxx-xxx; JCV-1120;
    doi:10.1016/j.jcv.2006.08.013.
    www.cfids-cab.org/rc/Devanur.pdf

    Abnormal impedance cardiography predicts symptom severity in chronic fatigue
    syndrome of disease. Peckerman A, Lamanca JJ, Dahl KA, et al. Am J Med Sci.
    2003; 326:5560.
    www.cfids-cab.org/MESA/Peckerman.pdf

    CFS: The Heart of the Matter - 2006 Dr Paul Cheney Seminar DVD
    www.dfwcfids.org/videos/video200609cheney_about.shtml
    Overview document of Dr Cheney’s DVD presentation:
    www.dfwcfids.org/medical/cheney/heart04.part1a.htm

    CFS is Low Output Heart Failure Secondary to Mitochondrial Failure. Dr Sarah
    Myhill
    www.drmyhill.co.uk/article.cfm?id=381

    Oxidative Stress Levels are Raised in Chronic Fatigue Syndrome and are
    Associated with Clinical Symptoms. Gwen Kennedy, Vance Spence et al. Free
    Radical Biology & Medicine: 39 (2005) 584-589. DOI:
    10.1016/j.freeradbiomed.2005.04.020.
    www.cfids-cab.org/rc/Kennedy.pdf

    Nitric Oxide Synthase Partial Uncoupling as a Key Switching Mechanism for
    the NO/ONOO- Cycle. Professor Martin Pall. Medical Hypotheses (2007) 69,
    821-825. Doi: 10.1016/j.mehy.2007.01.070.
    www.cfids-cab.org/rc/Pall-1.pdf

    Book: Explaining “Unexplained Illnesses”. Professor Martin L Pall. ISBN:
    978-0-7890-2389-6:
    www.haworthpress.com/store/PDFFiles/ForReps/Pall-Unexplained.pdf

    Chronic Fatigue syndrome is Associated with Chronic Enterovirus Infection of
    the Stomach. John K S Chia & Andrew Y Chia. Journal of Clinical Pathology
    2007, 0:1-6. DOI: 10.1136/jcp.2007.050054.
    http://press.psprings.co.uk/jcp/september/cp50054.pdf

    Use of Valganciclovir in Patients with Elevated Antibody Titres against
    Human Herpesvirus-6 (HHV-6) and Epstein-Barr Virus (EBV) who were
    experiencing central nervous system dysfunction including long-standing
    fatigue. Jose G Montoya et al. Journal of Clinical Virology; 37 Suppl. 1
    (2006) S33-S38.
    www.cfids-cab.org/rc/Kogelnik.pdf

    Chronic fatigue Syndrome: The Need for Subtypes. Professor Leonard A Jason
    et al. Neuropsychology Review, Vol. 15, No.1, March 2005. DOI:
    10.1007/s11065-005-3588-2.
    http://condor.depaul.edu/~ljason/

    Functional neuroimaging correlates of mental fatigue induced by cognition
    among chronic fatigue syndrome patients and controls. Dane B. Cook, Patrick
    J. O’Connor, Gudrun Lange, Jason Steffener. PII: S1053-8119(07)00127-9. DOI:
    10.1016/j.neuroimage.2007.02.033. Reference: YNIMG 4490. NeuroImage: 2007.
    www.cfids-cab.org/rc/Cook-2.pdf
    And see MERUK article: Non-invasive structural and functional neuroimaging
    in ME/CFS at:
    www.meresearch.org.uk/research/projects/neuroimage.html

    Causes of Death Among Patients With Chronic Fatigue Syndrome. Leonard A.
    Jason, Karina Corradi, Sara Gress, Sarah Williams, and Susan Torres-Harding.
    DePaul University, Chicago, Illinois, USA Health Care for Women
    International, 27:615626, 2006. Routledge. Copyright © Taylor & Francis
    Group, LLC. ISSN: 0739-9332 print / 1096-4665 online: DOI:
    10.1080/07399330600803766
    www.ingentaconnect.com/content/routledg/uhcw/2006/00000027/00000007/art00005
    ?crawler=true

    The Complexities of Diagnosis. Byron Hyde. In: Handbook of Chronic Fatigue
    Syndrome. Leonard A Jason et al. John Wiley & Sons, Inc. 2003.
    www.nightingale.ca/documents/ComplexitiesofDiagnosis.pdf

    The Clinical and Scientific Basis of Myalgic Encephalomyelitis / Chronic
    Fatigue Syndrome. Byron Marshall Hyde M.D. et al. The Nightingale Research
    Foundation. ISBN: 0-9695662-0-4.
    www.nightingale.ca/index.php?target=bookoffer

    Book: Enteroviral and Toxin Mediated Myalgic Encephalomyelitis / Chronic
    Fatigue Syndrome and Other Organ Pathologies. Dr John Richardson. Haworth
    Press, 2001. ISBN: 0-7890-1128-X.
    http://www.haworthpress.com/books/default.asp



    8. WEBSITES / UPDATES:

    ME Action UK - The Main UK biomedical ME activists and documents archive
    website:
    www.meactionuk.org.uk

    Invest in ME An excellent UK campaigning/info charity website sponsoring
    accredited biomedical professional conferences open to all Doctors:
    www.investinme.org/index.htm

    25% ME Group for the Severely Affected the best adult support biomedical
    ME website:
    www.25megroup.org/

    RiME Biomedical Campaign & Letter-writing Group website:
    www.erythos.com/RiME/

    TYMES Trust The Young ME Sufferers Trust website:
    www.tymestrust.org/

    ME Research UK (MERUK) Scotland based biomedical ME research/info
    organization led by Dr Vance Spence, Honorary Senior Research Fellow,
    University of Dundee Medical School: Website includes downloadable pdf
    abstracts/comments on all published papers:
    www.meresearch.org.uk/index.html

    CFS Research Foundation Funds Dr Jonathan Kerr & others’ biomedical
    research: website:
    www.cfsrf.com/index.html

    Co-Cure Best international ME/FM research/issues updates website:
    www.co-cure.org/

    The Gibson Group on the Scientific Research into ME (GSRME), House of
    Commons Website:
    www.erythos.com/gibsonenquiry/index.html

    World Health Organisation (WHO):
    www.who.int/classifications/icd/en/

    OPUS Organophosphate Users’ Support:
    www.rs-opus.co.uk/

    Georgina Downs UK Pesticides Campaign:
    www.pesticidescampaign.co.uk/


    ALSO, FOR FOUR HIGHLY QUESTIONABLE & CONTROVERSIAL OFFICIAL UK ‘CFS/ME’ SETS
    OF GUIDELINE DOCUMENTATION SEE THE FOLLOWING:

    NICE ‘Chronic Fatigue Syndrome / Myalgic Encephalomyelitis (or
    Encephalopathy)’ Diagnosis and Management guidelines at:
    http://guidance.nice.org.uk/CG53

    NHS Plus: Occupational Aspects of the Management of Chronic Fatigue
    Syndrome: a National Guideline
    www.nhsplus.nhs.uk/CMS/ArticleFiles/331/Files/273539_CFSyndrome.pdf

    DWP (Department of Work & Pensions): What is Chronic Fatigue Syndrome (CFS)
    / Myalgic Encephalomyelitis (ME)?
    www.dwp.gov.uk/medical/med_conditions/major/cfs/

    Royal College of Paediatrics and Child Health: RCPCH Evidence Based
    Guideline for the Management of CFS/ME (Chronic Fatigue Syndrome/Myalgic
    Encephalopathy) in Children and Young People .
    www.rcpch.ac.uk/Research/CE/Guidelines/RCPCH-guidelines



    9. ENDNOTES:

    [1] Do bear in mind the varying patient selection criteria involved and
    resultant confusion and controversy see for example Professor Malcolm
    Hooper's et al document entitled:
    What is ME? What is CFS? Information for Clinicians and Lawyers.
    www.meactionuk.org.uk/What_Is_ME_What_Is_CFS.htm

    [2] ITIS v OPATHY: Given that there is indeed evidence of brain
    inflammation, and spinal-cord inflammation in at least some patients, and
    that the term ‘Myalgic EncephaloMYELIITIS’ is recognised by the World Health
    Organisation as a biomedical neurological disorder it seems unwise, to say
    the least, to many clinicians/activists to attempt to change the disease
    label to ‘Myalgic EncephalOPATHY’ as advocated in some quarters.
    Not only is the EncephalOPATHY term unrecognized by the WHO, it is also open
    to psychiatric interpretation as it technically encompasses any disorder or
    dysfunction of the brain. Abandoning the WHO term for one that has no
    international recognition whatsoever would remove crucial protection from
    already beleaguered patients and further add to nosological confusion.
    Thus, in response to this precise question posed to him at the end of his
    2005 lecture in Norfolk (UK), Dr Bruce Carruthers, Senior Fellow of the
    Canadian Royal College and principle lead of the international expert team
    that produced the highly respected ME Clinical Case Definition, emailed the
    following response to K Short with permission to publish:

    “The Politics around this are horrendous, and the motive for any name change
    would seem to have less than the good of mankind at heart. I would not
    favour any kind of name change, since -itis is well established in the name
    ME, and there is no good reason for changing it, since - opathy would not
    reduce our state of ignorance re ME but serve to further confuse everyone-
    perhaps that is one of the motives behind the suggestion."

    Quotation viewable online at:
    www.investinme.org/Article%20010-Encephalopathy%20Carruthers.htm

    And as Professor Malcolm Hooper unequivocally states: “Despite the claims of
    some Psychiatrists, it is not true that there is no evidence of inflammation
    of the brain and spinal cord in ME.” See:
    www.investinme.org/Article%20010-Encephalopathy%20Hooper.htm

    And also see:
    www.meactionuk.org.uk/Note_on_the_term_ME.htm

    [3] For recovery rate information / discussion see Co-Cure Archives:
    www.co-cure.org/

    [4] Dr Elizabeth (Betty) Dowsett. Addressing the Spring 2002 Annual General
    Meeting of ME Support Norfolk (UK). The lecture was filmed and put into the
    ME Support Norfolk resource library.

    *****
    [Permission to Repost].

    M. C. Tully. April 2008
  2. justlooking

    justlooking New Member

    so I'm giving you a bump back to page one
  3. Bluebottle

    Bluebottle New Member

    Thank you so much for posting this.
  4. mezombie

    mezombie Member

  5. hi all,

    tansy first let me say to you,,many thanks for your post.

    you always come through for us as regards informing us of the latest information out there,connected to us that suffer from M.E.

    im very grateful to be part of the message boards,and grateful to all our members for sharing information with us,even though you all must feel ill and fatigued at times,like i do.

    so many thanks for finding the energy to inform us of this latest information.

    i would also like to add that i agree with all that you have written in your post.

    i would also like to say to anyone suffering from M.E.

    please dont drink TOO MUCH water,no matter what they tell you at the hospitals pain management courses.

    i drank the amount they told me to drink,and it was just too much.

    i think it was washing away vital nutriants that my body needed to keep inside of it a while longer.

    TOO MUCH peeing, isnt good for us.

    also anyone who is forced to go into hospital on the wards for people who are thought to have mental health issues...

    well if you are a M.E. sufferer,you need peace and quiet,at times,so it isnt nice to put us with people who have mental health issues,as those people can be loud and disruptive,unlike M.E. sufferers.

    so mixing us up with those people,isnt fair to us and can put a strain on our hearts.

    also dont force us into TOO MUCH excersize.

    our illness knows when enough is enough,so let us decide how far to take our own body.

    ......

    take care all,love fran

    and thanks again tansy.
  6. TeaBisqit

    TeaBisqit Member

    I just sent the post off to my uncle, the disbelieving doctor. I don't know if he'll even bother to give it a glance, but it was worth a try. I am so incredibly sick of his attitude. He still treats me like I have a mental illness instead of a very real physical one. And I'm flaring so badly today that I can't do anything. So I thought sending the info was at least something.