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Peter White Advising Reeves And The CDC Concerns

Discussion in 'General ME/CFS News' started by bananaman, Nov 3, 2009.

  1. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Wildaisy, I hope you won't mind my clarifying that Sophia was sectioned in July 2003. It is my understanding from the website that Sophia was released back home, several weeks later, in 2003, following a tribunal.

    She died at home in 2005 - not in hospital or on a psychiatric ward.

    http://www.sophiaandme.org.uk/sophia & m.e. her story.html


    Also there had been an earlier case in the UK where "CFS" had been given on a death certificate as a contributory cause of death - the late Annabel Senior, wife of Richard Senior. Richard has since run support groups and emailing lists for carers of people with ME and I remember having some brief contact with him following the news of his wife's death. I believe that Annabel also had cardiac problems recorded as a contributory factor.

    In 2006, two letters were published in New Scientist [16 June 2006], following an article on the death of Sophia Mirza - one from Richard Senior and one from Sue Waddle, who at the time was a Trustee of Invest in ME:


    Not, sadly, the first


    29 July 2006 by Richard Senior, Glastonbury, Somerset, UK
    Richard Senior

    http://www.newscientist.com/article/mg19125620.600-not-sadly-the-first.html


    I hope you won't feel I am being insensitive in clarifying these two points.

    Suzy
  2. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    I've had this PDW related document on file for several months but don't think I've flagged it up anywhere yet:


    http://bnpa.org.uk/doc/HANDBOOK.pdf

    THE BRITISH NEUROPSYCHIATRY ASSOCIATION

    http://www.bnpa.org.uk

    Neurology and Psychiatry SpRs Teaching Weekend

    12 to 14 December 2008 St Anne’s College – Oxford

    THE ESSENTIALS OF NEUROPSYCHIATRY

    Presentations:

    [...]

    09:50 Chronic fatigue syndrome: neurological, psychological or both?

    Peter White, Professor of Psychological Medicine, Barts and the London Medical School



    The extract I am appending is a summary of White's presentation (Page 46 of PDF) in which he talks about the taxonomy of CFS as "being a mess".


    During his Royal Society of Medicine "CFS" Conference presentation, in April 2008, White had said, ominously:

    "...So ICD-10 is not helpful and I would not suggest, as clinicians, you use ICD-10 criteria. They really need sorting out; and they will be in due course, God willing…"

    See unofficial transcript of part of White's RSM presentation, here, in which he presents his thoughts on current ICD taxonomy:

    Prof Peter White discouraging RSM Conference from using ICD-10

    http://meagenda.wordpress.com/2009/...iscouraging-rsm-conference-from-using-icd-10/



    In an April 2009 paper, co-authored by White, the authors propose a change to current ICD-10 codings:

    http://journals.cambridge.org/action/displayAbstract?fromPage=online&aid=5446224

    Psychological Medicine Preprint "Risk markers for both chronic fatigue and irritable bowel syndromes: a prospective case-control study of primary care"

    In the section "Implications for Further Research" the authors state that because the paper finds that:

    "These data also suggest that fatigue syndromes are heterogeneous (Vollmer-Conna et al. 2006), and that CFS/ME and PVFS should be considered as separate conditions, with CFS/ME having more in common with IBS than PVFS does (Aggarwal et al. 2006). This requires revision of the ICD-10 taxonomy, which classifies PVFS with ME (WHO, 1992)"


    http://bnpa.org.uk/doc/HANDBOOK.pdf

    Extract from presentation given at Neurology and Psychiatry SpRs Teaching Weekend


    Chronic fatigue syndrome: neurological, psychological or both?

    Peter White, Professor of Psychological Medicine, Barts and the London Medical School

    p.d.white@qmul.ac.uk

    Epidemiology of fatigue and CFS

    Fatigue is a common symptom in both the community and primary care. When asked, between 10 and 20 per cent of people in the community will report feeling abnormally tired at any one time.

    At the same time, fatigue is continuously distributed within the community, with no point of rarity.

    Therefore any cut-off is arbitrary and the prevalence will vary by how the question is asked, the symptom volunteered, and its context. Between 1.5 % and 6.5 % of European patients will consult their general practitioner with a primary complaint of fatigue every year, the incidence varying by age and population. Fatigue is more commonly reported and presented to general practitioners by women and the middle-aged, and is most closely associated with mood disorders and reported stress. It does not seem to vary by ethnicity in the UK, but there is an intriguing paradox in that it is reported more commonly by those in high income countries, yet is presented to medical care more often in low income countries.

    Prolonged or chronic fatigue is significantly less common than the symptom of fatigue and it is only in the last 10 years that consensus has emerged about the existence of a chronic fatigue syndrome (CFS), also called myalgic encephalomyelitis (ME). CFS is now accepted as a valid diagnosis by medical authorities in the UK, in the United States of America, as well as internationally. About one third of patients presenting to their doctor with six months of fatigue will meet criteria for a chronic fatigue syndrome. The other two thirds have fatigue secondary to another condition, most commonly mood and primary sleep disorders. Its primary symptom is fatigue, both physical and mental, which particularly follows exertion. Other symptoms agreed in consensual guidelines include poor concentration and memory, sleep disturbance, headache, sore throat, tender lymph glands, muscle and joint pain.

    There are several criterion based definitions of CFS. These definitions were derived by consensus and have not been supported by empirical studies, and continue to be refined. Their utility stems from providing reliable criteria for research studies, rather than clinical use. The prevalence of CFS is between 2.5 % and 0.4 % depending on the definition used and whether comorbid mood disorders are excluded (that is mood disorders that are not thought to be the primary diagnoses). It is most common in women, the middle-aged, and ethnic minorities (unlike fatigue) – at least in English speaking countries.

    The diagnosis and classification of CFS

    The clinical taxonomy for CFS is a mess. The ICD-10 classification defines CFS within both the neurology chapter and mental health chapters. Myalgic encephalomyelitis, the alternative name for CFS, is classified as a neurological disease (G93.3) (a.k.a. post-viral CFS), whereas neurasthenia (a.k.a. CFS not otherwise specified) is classified within mental health (F48).

    [Ed: Note that White does not mention, here, that Chronic fatigue syndrome is listed in ICD-10: Volume 3, The Alphabetical Index* at G93.3, the same coding as for Benign myalgic encephalomyelitis, and for Postviral fatigue syndrome] (ICD-10: Volume 1: The Tabular List).

    * http://www.scribd.com/doc/7350978/ICD10-2006-Alphabetical-Index-Volume-3

    [Back to PDW]

    (Incidentally, this mess is not specific to CFS, since there are several conditions within the neurology chapter of ICD-10 that are also classified in the mental and behavioural disorders chapter. For instance, Alzheimer’s disease is classified within neurology, whereas dementia due to Alzheimer’s disease is classified under mental health. My personal view is that it is high time that all mental health disorders and neurological diseases affecting the brain were classified within the same chapter, simply called diseases/disorders of the brain and nervous system.)

    [Ed: The WHO Department of Mental Health and Substance Abuse, which is overseeing the revision of Chapter V (Mental and Behavioural Disorders), is also managing the technical part of the revision of Chapter VI (Diseases of the Nervous System). According to Dr Geoff Reed, Senior Project Officer, department of Mental Health and Substance Abuse, Proposal forms for ICD Chapter V and Chapter VI are expected to be released within the next couple of weeks - I'm waiting on a heads-up.]

    There is also a current debate between “lumpers” and “splitters” about the nosology of “functional” somatic syndromes (symptom defined conditions), such as CFS, IBS and “fibromyalgia”. Some argue that the close associations between the syndromes (those with CFS are also more likely to have fibromyalgia and/or IBS) argues in favour of their being different manifestations of one over-arching functional somatic syndrome (the “lumpers”). Others argue that these syndromes are best understood by exploring their heterogeneity (the “splitters”). There is evidence to support both arguments, but two large and recent epidemiological studies suggest that chronic unexplained fatigue, for one, is both associated with and separate from other “functional” somatic syndromes. In particular, predisposing risk factors are shared whereas triggering factors are different.

    CFS is not an easy diagnosis to make, since misdiagnosis is common in patients diagnosed as having CFS. A recent audit of my CFS clinic revealed that 4 out of 10 new patients (n = 250) assessed did not have CFS, and that was after a third of referrals had already been rejected as not being CFS.

    The most common misdiagnoses were mood disorders, especially depressive disorders, and primary sleep disorders, particularly sleep apnoea. Other misdiagnoses included coeliac disease and autoimmune conditions. Alternative neurological diagnoses were made in 2%.

    Aetiology and pathophysiology

    The aetiology of CFS is unknown, but there is evidence that different risk markers are associated with predisposition, triggering, and maintenance of the illness. Predisposing risk markers include female sex, middle age, mood disorders (especially depressive disorders), other symptom defined syndromes, such as irritable bowel syndrome, and possibly either sedentary behaviour or excessive activity. As might be expected CFS patients are more likely to have attended their GP, than healthy matched controls, even up to 15 years before onset, but recent work shows that those with IBS (and no CFS) have the same tendency.

    Triggering risk markers are less well established, but there is sufficient evidence to support certain infections as aetiological factors not only for fatigue but also CFS, with the best replicated evidence supporting a role for Epstein-Barr virus infection, which triggers CFS in 10% of those infected.

    Maintaining or perpetuating risk markers are most important in determining treatment programmes, since reversing maintaining factors should lead to improvement. Reasonably well established factors include mood disorders, such as dysthymia, illness beliefs such as believing the whole condition is physical, pervasive inactivity, avoidant coping, membership of a patient support group, and being in receipt of or dispute about financial benefits.

    Few pathophysiological findings in CFS have been replicated in independent studies. Those that have been include down-regulated hypothalamic pituitary-adrenal axis, physical deconditioning, and discrepant reports between perception of symptoms and disability and their objective tests.

    The latter finding is now supported by functional brain scanning studies suggesting altered brain activity with specific tasks. The discrepancy between subjective states and objective tests has been found before in other symptom defined syndromes, such as “fibromyalgia”, and may be related to enhanced interoception (the perception of visceral phenomena), a concept first described by Charles Sherrington in 1904. One hypothesis currently being tested is that the common predisposition to “functional” somatic syndromes is caused by enhanced interoception.

    Recent work suggests that these factors may be reversed by rehabilitation.

    Prognosis

    Without treatment the prognosis of CFS is poor with a systematic review of outcomes finding the median full recovery rate was 5 % (range 0–31%) and the median proportion of patients who improved of 39.5% (range 8–63%). Being younger, having less fatigue baseline, a sense of control over symptoms and not attributing illness to a physical cause were all associated with a better outcome. The prognosis is considerably better after treatment.

    Treatment

    The NICE guidelines, published in 2007, were based on an updated systematic review. The essence of specialist care is rehabilitation, provided on an individual basis with an appropriately qualified and trained therapist. The two approaches with the greatest evidence of efficacy are cognitive behaviour therapy (CBT) and graded exercise therapy (GET). Approximately 60% of patients report significant improvement with these approaches and about 25%report full recovery, which lasts. No pharmacological treatments are recommended (antidepressants are ineffective), but symptomatic pharmacotherapy for specific symptoms (such as pain) or comorbid conditions such as depressive illness) can be helpful complementary treatments.

    These rehabilitation approaches have not received universal approval from patient charities, with concerns that patients may be harmed by exercise therapies or that CBT implying that the condition is psychological.

    Is CFS neurological or psychological?

    This is a nonsensical question when one considers the neuroscience of consciousness and recent advances in functional brain physiology. The philosopher, John Searle, stated the answer to this Cartesian dualism that still bedevils western medicine. “Conscious states are caused by neurophysiological mechanisms, and are realised in neurophysiological systems.” Therefore it is not possible to have a psychological process or event without a neurological mediating process. It is neither of the mind or body; it is both.

    Fatigue secondary to neurological diseases

    Fatigue is commonly associated with chronic medical disorders, but it should be differentiated from fatiguability. Fatiguability is the onset of a physical sensation of fatigue and weakness after exertion and is commonly reported with neurological diseases such as multiple sclerosis and myopathies.

    Apart from measures of disease activity, other associations of secondary fatigue in general that have been repeatedly found include sleep disturbance, mood disorders, inactivity and physical deconditioning. Studies of fatigue associated with multiple sclerosis are instructive and exemplary. As in all studies of secondary fatigue, measures of the severity or pathophysiology of the disease itself are associated with fatigue. Some cytokines are associated, but others are not.

    Associations vary depending on the fatigue measure, confirming the multidimensional nature of fatigue, but all measures are associated with depression. Objectively confirmed sleep disturbance is also associated with fatigue. Fatigue associated with MS therefore requires biopsychosocial management.

    There have been a number of studies of various treatments aimed at reversing the associations of secondary fatigue in general, in the hope they would help fatigue directly, with variable results. As with CFS, the most consistent evidence of efficacy has been with graded exercise programmes and CBT.

    Attarian HP, Brown KM, Duntley SP, et al. The relationship of sleep disturbances and fatigue in multiple sclerosis. Arch. Neurol. 61 (2004), 525–8.

    Baker R, Shaw EJ. Diagnosis and management of chronic fatigue syndrome or myalgic encephalomyelitis (or encephalopathy): summary of NICE guidance. BMJ 2007 doi: 10.1136/bmj.39302.509005.AE

    Chambers D, Bagnall A-M, Hempel S, Forbes C. Interventions for the treatment, management and rehabilitation of patients with chronic fatigue syndrome/myalgic encephalomyelitis: an updated systematic review. J R Soc Med 2006;99:506-20.

    Cleare AJ. The neuroendocrinology of chronic fatigue syndrome. Endocr. Rev. 24 (2003), 236–52.

    Flachenecker P, Bihler I, Weber F, et al., Cytokine mRNA expression in patients with multiple sclerosis and fatigue. Mult. Scler. 10 (2004), 165–9.

    Fulcher KY, White PD. Strength and physiological response to exercise in patients with the chronic fatigue syndrome. J. Neurol. Neurosurg. Psychiatry 69 (2000), 302–7.

    Joyce J, Hotopf M, Wessely S. The prognosis of chronic fatigue and chronic fatigue syndrome: a systematic review. Q. J. Med. 90 (1997), 223–33.

    Kroencke DC, Lynch SG, Denney DR. Fatigue in multiple sclerosis: relationship to depression, disability, and disease pattern. Mult. Scler. 6 (2000), 131–6.

    Lyall M, Peakman M, Wessely S. A systematic review and critical evaluation of the immunology of chronic fatigue syndrome. J. Psychosom. Res. 55 2003), 79–90.

    National Institute for Health and Clinical Excellence. Clinical guideline CG53. Chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy): diagnosis and management. London, NICE, 2007. http://guidance.nice.org.uk/CG53.

    Reeves WC et al. Identification of ambiguities in the 1994 chronic fatigue syndrome research case definition and recommendations for resolution.BMC Health Serv Res 3 (2003), 25.

    Romani A, Bergamaschi R, Candeloro E, et al., Fatigue inmultiple sclerosis: multidimensional assessment and response to symptomatic treatment. Mult. Scler. 10 (2004), 462–8.

    M. C. Tartaglia, S. Narayanan, S. J. Francis, et al., The relationship between diffuse axonal damage and fatigue in multiple sclerosis. Arch. Neurol. 61 (2004), 201–7.

    Wessely SC, Hotopf M, Sharpe M. Chronic Fatigue and its Syndromes (Oxford: Oxford University Press, 1998).

    Wessely S, Nimnuan C, Sharpe M. Functional somatic syndromes: one or many? Lancet 354 (1999), 936–9.

    Wessely S, White PD. In debate: there is only one functional somatic syndrome. Br. J. Psychiatry 185 (2004), 95–6.

    White PD, Thomas JM, Kangro HO, et al., Predictions and associations of fatigue syndromes and mood disorders that occur after infectious mononucleosis. Lancet 358 (2001), 1946–54.

    White PD, Sharpe MC, Chalder T, DeCesare JC, Walwyn R; on behalf of the PACE trial group. Protocol for the PACE trial: a randomised controlled trial of adaptive pacing, cognitive behaviour therapy, and graded exercise, as supplements to standardised specialist medical care versus standardised specialist medical care alone for patients with the chronic fatigue syndrome/myalgic encephalomyelitis or encephalopathy. BMC Neurol 2007;7:6.

    Extract source: http://bnpa.org.uk/doc/HANDBOOK.pdf
  3. Dolphin

    Dolphin Senior Member

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    Yes, that may be technically correct.

    But it is important to point out for people who might not follow the link that Sophia got worse from being sectioned - she was extremely ill after it. There would seem to be a good chance that she would not have died if she had not been sectioned.
  4. bananaman

    bananaman

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    Bognor UK
    Peter White (UK) psychiatrist CFS presentations in Bergen on 20 Oct 09

    Three slide show presentations links below- by Peter White (UK) psychiatrist in Bergen on 20 Oct 09.

    These have to be seen to be believed this man is pure evil!

    They are: What is CFS?; Causes; and Treatments.

    In the 'Causes' presentation, you'll see that he dismisses infection as a cause of CFS and says CFS Maintaining risk markers are Older age, mood disorders, illness beliefs, inactivity, sleep problems, search for legitimacy, benefits, diagnostic label & child abuse.



    http://www.meactionuk.org.uk/Bergen-What-is-CFS-2009.pdf
    http://www.meactionuk.org.uk/Bergen-Causes-of-CFS-2009-v2.pdf
    http://www.meactionuk.org.uk/Bergen-Treatment-2009.pdf
  5. ''search for legitimacy''

    For me, this is the most sadistic comment. :mad:

    Search for legitimacy is what all humans do, to validate their suffering and obtain help - be it medical or not.
    We do this to survive to live, to stay alive!

    Yet he has the audacity to mock this, and call it a 'maintaining factor' of CFS.

    Absolutely incredible.

    God helps this man if oneday a deadly retrovirus is found and patients are not mentally ill, but immune supressed.

    :cool:
  6. George

    George Guest

    Curiosity

    I'm curious, what would happen if say around December there was a confirming study released, and say of the 5 other groups working 3 others come up with confirming reports.

    What happens to Reeves, White, Wessley? What happens to their careers, their belief systems (cause they really believe this), their legitimacy, their Financial s? I mean yeah, we get all happy with the I told ya so dance. Big deal. We go on and go to doctors that will test us, treat us and work with us to get better and go out and get a life. But what happens to these guys and their associates?
  7. bananaman

    bananaman

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    Bognor UK
    George I am sure that Reeves, White, Wessley et al will all retire very happily with their huge pensions from the medical insurance industry and the Governments that they have served so well.
  8. Hospital trusts will have to justify unfounded accusations of mental illness leading to 'innapropriate therapeutic intervention' (CBT/GE) in ME CFS patients with mitochondrial induced heart failure.

    Hospital trusts will then blame the people who advised them. ME has been a 'real' disease since 1969 and the British DOH/NHS have stated openly in the House of Lords that they accept the WHO classificaiton off ME as a neuro disease.So there is no one to blame. They chose and choose to abuse even today.

    If the abuse happens after 1969, with no diagnosed mental illness - they are all screwed in court.

    They will not escape, few dictators do. They will not escape unless NHS trusts pay out millions of pounds of damages to patients - to prevent these generals being pulled into the spotlight.

    They said to my face, if they kill me - they'll ''apologise'' then grinned.

    This is the level of SUPREME danger and arrogance these medical professionals have. They are not doctors, they are bullies and cowards who masquerade as doctors.
  9. Daisymay

    Daisymay Senior Member

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    George I don't think they really believe it, well not the core culprits, Wessely, Sharpe, White, Chalder, Reeves.

    I think these people know only too well that we are physically ill, it is consciously done I have no doubt, though perhaps some of the hangers on are blindly believe these guys and they may genuinely believe they are right because what Wessely and co are saying jives with their views of body/mind issues and their own prejudicies about people like us being lazy shirkers etc and of how superior they are to us.

    With all that has gone on in the UK and in the US I think we have t believe that these people know exactly what they are doing and that they know full well this is a serious physical disease.

    BW,

    Daisymay

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