Engaging With M.E.

A summary of the recent lecture presented by Professor Malcolm Hooper

(Emeritus Professor of Medicinal Chemistry, University of Sunderland)

Contemporaneous notes made during the talk, “Engaging With M.E.”, given by Professor Malcolm Hooper, Emeritus Professor of Medicinal Chemistry, University of Sunderland, at Sparsholt College, Winchester, on Monday, 14 November 2005 for the Invest in M.E. (IiME) group.  IiME organised this talk in conjunction with the Eastleigh and Winchester M.E. Support Group.
 

  1. Prof. Hooper got involved with M.E. through working with Gulf War veterans.  Garth Nicolson’s evidence in 1996 showed similarities between Gulf War Syndrome (GWS) and M.E.  There are also links to Multiple Chemical Sensitivity (MCS) and Organophosphate (OP) exposure.


  2. The World Health Organisation (WHO) has defined M.E. as an “Organic Biomedical Neurological Disorder” under their International Classification of Diseases, Volume 10, reference ICD-10-G93.3.


  3. Definitions are critical:        
    “All physical symptoms and biochemistry markers have been gradually removed and everything directed towards a psychiatric definition.” 
  4. [1]

    M.E. is not Chronic Fatigue.  We should call this illness M.E. and strive for the use of the Canadian Guidelines definition.  Otherwise, we move quickly from ICD-10-G93.3 to the ICD-10-F48 mental and behavioural disorders, and this is what the psychiatric lobby want Many different illnesses and conditions are associated with significant fatigue, so a confusing “Rag-Bag” of ill-defined patients have become labelled with “Fatigue”.

  5. In M.E. patients, the “Routine Tests are always strikinglyNormal, i.e. there is nothing wrong with you !  Psychiatrists have an explanation for this - in that you must have a psychiatric illness.


  6. Professor Simon Wessely claims that this is a “somatisation disorder” which can be treated by Cognitive Behaviour Therapy (CBT) and Graded Exercise Treatment (GET).


  7. For the 25% of M.E. sufferers that are severely affected, CBT has been shown to be, at best, ineffective and GET can make people worse.  So the obvious question is “Why have all these millions of pounds been spent on M.E. clinics that offer these therapies ?

  8. The Canadian Guidelines [2] provide a clinician with clinical signs that can be investigated.


  9. Enteroviruses are implicated in M.E. and one particular suspect is the Coxsackie B enterovirus identified by Dr John Richardson and Irving Spurr [3].

  10. Toxins are introduced by viruses and chemical toxins which open up the “Blood-Brain Barrier”.  Dr Basant Puri has measured the effects on the brain and noted that this can lead to language and gut problems.


  11. There are three systems in the body:

             the Nervous system;

             the Immune system; and,

             the Endocrine system.


    All these three are interconnected, inter-communicating, such that if one system is disrupted by some means, then there are “knock-on effects” to the other two systems.


  12. There are tests that can show the effects of M.E. such as: SPECT Scans and Blood Flow.  Also, some supplements have been shown to help in certain people, e.g. NADH, Succinate and Co-Q10.  Dr Sarah Myhill [4] has been able to develop individual supplement / drug regimes to help a number of patients.  Also, certain anti-viral drugs, such as Pleconaril, Ribavirin and Interferon-α, and immunoglobulins can be effective for some people.

    Summary Messages

    1. Encephalomyelitis”, not encephalopathy, is the correct term, which is classified by the WHO.  We should maintain the use of the current definitions of M.E. and also the use of Myalgic Encephalomyelitis.
    2. We need the Canadian Guidelines to be adopted to provide a consistent tool for diagnosis.
    3. M.E. is a serious neurological illness not a psychiatric illness.      
      People do die of M.E.
    4. M.E. Centres, as currently defined by the Department of Health, represent a very inefficient use of money that could have been better spent on biomedical research and patient support.

References

[1] Professor Malcolm Hooper, Emeritus Professor of Medicinal Chemistry, University of Sunderland.

[2] Bruce M. Carruthers et al. (2003). Myalgic Encephalomyelitis / Chronic Fatigue Syndrome : Clinical Working Case Definition, Diagnostic and Treatment Protocols.  Journal of Chronic Fatigue Syndrome. Volume 11, No.1. See here for the full paper.

[3] ‘Enteroviral Myalgic Encephalomyelitis’. The Irving Spurr Annual Research Group Meeting, 18 October 2005.

[4] Dr Sarah Myhill: www.drmyhill.co.uk

 

Further Reading

Books for Clinicians and Other References

  • Richardson, Dr John
    Enteroviral and Toxin Mediated Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Other Organ Pathologies 
    The Haworth Medical Press, 2001,  
    Hardback ISBN: 0-7890-1127-1, Paperback ISBN: 0-7890-1128-X

  • Hyde, Dr Byron Marshall, Goldstein, Jay and Levine, Paul (Eds)  
    The Clinical and Scientific Basis of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome      
    The Nightingale Research Foundation, 1992, ISBN: 0-9695662-0-4


  • Walker, Martin J      
    SKEWED: Psychiatric Hegemony and the Manufacture of Mental Illness in Multiple Chemical Sensitivity, Gulf War Syndrome, Myalgic Encephalomyelitis and Chronic Fatigue Syndrome  
    Slingshot Publications, 2003, ISBN: 0-9519646-4X.
     


  • “Enteroviral Myalgic Encephalomyelitis”          
    The Irving Spurr Annual Research Group Meeting 
    18 October 2005

 

11.   Internet References

One can download the slides from of Malcolm Hooper's presentation via this link.

Invest in ME is extremely grateful to Professor Hooper for his time and efforts in seeking justice in the debate on ME. One can see more of Professor Hooper's articles via this link.

 

Kathleen McCall

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