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Allergies and MCS in ME/CFS

Discussion in 'Action Alerts and Advocacy' started by Daisymay, Nov 30, 2010.

  1. Daisymay

    Daisymay Senior Member

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    Permission to repost.

    http://www.meactionuk.org.uk/Allergies-and-MCS-in-ME-CFS.htm

    http://www.meactionuk.org.uk/Allergies-and-MCS-in-ME-CFS.pdf


    ALLERGIES AND MULTIPLE CHEMICAL SENSITIVITY IN MYALGIC ENCEPHALOMYELITIS /CHRONIC FATIGUE SYNDROME

    Margaret Williams 29th November 2010


    At this auspicious time of celebration of 25 years of Barts Fatigue Service for those suffering from chronic fatigue -- interchangeably referred to by Wessely School members as fatigue, chronic fatigue syndrome, CFS, CFS/ME, ME, MUS (medically unexplained symptoms), MUPS (medically unexplained physical symptoms) and as a functional somatic syndrome -- it is perhaps worth recalling that as part of the service provided over the last 25 years, the Head of the Unit, psychiatrist Professor Peter White (who is also Principal Investigator of the MRC PACE Trial) seems to have been so busy providing this remarkable service that he has been unable to keep abreast of the emerging medical science relating to the chronic inflammatory neuroimmune disorder known internationally as ME/CFS.

    There are many examples of Professor Whites apparent lacunae. A particularly notable one concerns the incidence of allergies and multiple chemical sensitivity in ME/CFS which, curiously, given the sheer amount of published evidence, Professor White denies.

    The draft NICE Guideline on CFS/ME that was sent out for consultation included a section on multiple chemical sensitivity (MCS) as a component of CFS/ME and called for proper training about it to be given to those caring for an individual with severe CFS/ME professionally. Professor White sprang into action over this, stating starkly: A patient with increased sensitivity to the smell of various chemicals may be suffering from multiple chemical sensitivity, but you would be making a dubious assumption to state that this is part of or even characteristic of severely disabling CFS/ME. MCS is a potentially remediable condition through a graded exposure programme on the basis that the underlying pathophysiology is a conditioned response. It should not be considered as a part of CFS/ME (Stakeholder comments on Full Guideline: 92: 261 3). NICEs response was to remove this section on MCS and it did not appear in the final Guideline.

    It is worth recalling that Multiple Chemical Sensitivity (MCS) may be classified in ICD-10 at T78.4 (Allergy, Unspecified) and that Allergy Unspecified is coded in the UK Read Codes at SN53.

    The following examples were published during the 25 years of the fatigue service of which Professor White is so proud.

    For examples see links.

    These examples serve to illustrate the long-recognised organic basis and the high incidence of allergies, hypersensitivities and intolerances that are often a component of ME/CFS.

    In light of this corpus of empirical evidence it is notable that Professor White seems to have retained an inflexible belief -- a belief that has not changed in a quarter of a century - that simple graded exposure (analogous to his belief in the curative properties of incremental graded exercise) will reverse the documented organic pathophysiology illustrated above.

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