Naming Migraine and Those Who Have It

Authors

  • William B. Young MD, FAHS, FAAN,

    Corresponding author
    1. From Department of Neurology, Thomas Jefferson University, Philadelphia, PA, USA (W.B. Young); Department of Sociology, Rutgers University, New Brunswick, NJ, USA (J. Kempner); Division of Headache and Pain, John R. Graham Headache Center, Boston, MA, USA (E.W. Loder); Headache, Plymouth, MA, USA (J. Roberts); Department of English, University of British Columbia, Vancouver, BC, Canada (J.Z. Segal); Temple University, Philadelphia, PA, USA (M. Solomon); Headache Care Center, Springfield, MO, USA (R.K. Cady); Philadelphia, PA, USA (L. Janoff); Mayo Clinic, Rochester, MN, USA (R.D. Sheeler); Patient advocate, Washington, WV, USA (T. Robert); Department of Nursing, Thomas Jefferson University Hospital, Philadelphia, PA, USA (J. Yocum); New England Center for Headache Stamford, Stamford, CT, USA (F.D. Sheftell).
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  • Joanna Kempner PhD,

    1. From Department of Neurology, Thomas Jefferson University, Philadelphia, PA, USA (W.B. Young); Department of Sociology, Rutgers University, New Brunswick, NJ, USA (J. Kempner); Division of Headache and Pain, John R. Graham Headache Center, Boston, MA, USA (E.W. Loder); Headache, Plymouth, MA, USA (J. Roberts); Department of English, University of British Columbia, Vancouver, BC, Canada (J.Z. Segal); Temple University, Philadelphia, PA, USA (M. Solomon); Headache Care Center, Springfield, MO, USA (R.K. Cady); Philadelphia, PA, USA (L. Janoff); Mayo Clinic, Rochester, MN, USA (R.D. Sheeler); Patient advocate, Washington, WV, USA (T. Robert); Department of Nursing, Thomas Jefferson University Hospital, Philadelphia, PA, USA (J. Yocum); New England Center for Headache Stamford, Stamford, CT, USA (F.D. Sheftell).
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  • Elizabeth W. Loder MD,

    1. From Department of Neurology, Thomas Jefferson University, Philadelphia, PA, USA (W.B. Young); Department of Sociology, Rutgers University, New Brunswick, NJ, USA (J. Kempner); Division of Headache and Pain, John R. Graham Headache Center, Boston, MA, USA (E.W. Loder); Headache, Plymouth, MA, USA (J. Roberts); Department of English, University of British Columbia, Vancouver, BC, Canada (J.Z. Segal); Temple University, Philadelphia, PA, USA (M. Solomon); Headache Care Center, Springfield, MO, USA (R.K. Cady); Philadelphia, PA, USA (L. Janoff); Mayo Clinic, Rochester, MN, USA (R.D. Sheeler); Patient advocate, Washington, WV, USA (T. Robert); Department of Nursing, Thomas Jefferson University Hospital, Philadelphia, PA, USA (J. Yocum); New England Center for Headache Stamford, Stamford, CT, USA (F.D. Sheftell).
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  • Jason Roberts PhD,

    1. From Department of Neurology, Thomas Jefferson University, Philadelphia, PA, USA (W.B. Young); Department of Sociology, Rutgers University, New Brunswick, NJ, USA (J. Kempner); Division of Headache and Pain, John R. Graham Headache Center, Boston, MA, USA (E.W. Loder); Headache, Plymouth, MA, USA (J. Roberts); Department of English, University of British Columbia, Vancouver, BC, Canada (J.Z. Segal); Temple University, Philadelphia, PA, USA (M. Solomon); Headache Care Center, Springfield, MO, USA (R.K. Cady); Philadelphia, PA, USA (L. Janoff); Mayo Clinic, Rochester, MN, USA (R.D. Sheeler); Patient advocate, Washington, WV, USA (T. Robert); Department of Nursing, Thomas Jefferson University Hospital, Philadelphia, PA, USA (J. Yocum); New England Center for Headache Stamford, Stamford, CT, USA (F.D. Sheftell).
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  • Judy Z. Segal PhD,

    1. From Department of Neurology, Thomas Jefferson University, Philadelphia, PA, USA (W.B. Young); Department of Sociology, Rutgers University, New Brunswick, NJ, USA (J. Kempner); Division of Headache and Pain, John R. Graham Headache Center, Boston, MA, USA (E.W. Loder); Headache, Plymouth, MA, USA (J. Roberts); Department of English, University of British Columbia, Vancouver, BC, Canada (J.Z. Segal); Temple University, Philadelphia, PA, USA (M. Solomon); Headache Care Center, Springfield, MO, USA (R.K. Cady); Philadelphia, PA, USA (L. Janoff); Mayo Clinic, Rochester, MN, USA (R.D. Sheeler); Patient advocate, Washington, WV, USA (T. Robert); Department of Nursing, Thomas Jefferson University Hospital, Philadelphia, PA, USA (J. Yocum); New England Center for Headache Stamford, Stamford, CT, USA (F.D. Sheftell).
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  • Miriam Solomon PhD,

    1. From Department of Neurology, Thomas Jefferson University, Philadelphia, PA, USA (W.B. Young); Department of Sociology, Rutgers University, New Brunswick, NJ, USA (J. Kempner); Division of Headache and Pain, John R. Graham Headache Center, Boston, MA, USA (E.W. Loder); Headache, Plymouth, MA, USA (J. Roberts); Department of English, University of British Columbia, Vancouver, BC, Canada (J.Z. Segal); Temple University, Philadelphia, PA, USA (M. Solomon); Headache Care Center, Springfield, MO, USA (R.K. Cady); Philadelphia, PA, USA (L. Janoff); Mayo Clinic, Rochester, MN, USA (R.D. Sheeler); Patient advocate, Washington, WV, USA (T. Robert); Department of Nursing, Thomas Jefferson University Hospital, Philadelphia, PA, USA (J. Yocum); New England Center for Headache Stamford, Stamford, CT, USA (F.D. Sheftell).
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  • Roger K. Cady MD,

    1. From Department of Neurology, Thomas Jefferson University, Philadelphia, PA, USA (W.B. Young); Department of Sociology, Rutgers University, New Brunswick, NJ, USA (J. Kempner); Division of Headache and Pain, John R. Graham Headache Center, Boston, MA, USA (E.W. Loder); Headache, Plymouth, MA, USA (J. Roberts); Department of English, University of British Columbia, Vancouver, BC, Canada (J.Z. Segal); Temple University, Philadelphia, PA, USA (M. Solomon); Headache Care Center, Springfield, MO, USA (R.K. Cady); Philadelphia, PA, USA (L. Janoff); Mayo Clinic, Rochester, MN, USA (R.D. Sheeler); Patient advocate, Washington, WV, USA (T. Robert); Department of Nursing, Thomas Jefferson University Hospital, Philadelphia, PA, USA (J. Yocum); New England Center for Headache Stamford, Stamford, CT, USA (F.D. Sheftell).
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  • Laura Janoff BA,

    1. From Department of Neurology, Thomas Jefferson University, Philadelphia, PA, USA (W.B. Young); Department of Sociology, Rutgers University, New Brunswick, NJ, USA (J. Kempner); Division of Headache and Pain, John R. Graham Headache Center, Boston, MA, USA (E.W. Loder); Headache, Plymouth, MA, USA (J. Roberts); Department of English, University of British Columbia, Vancouver, BC, Canada (J.Z. Segal); Temple University, Philadelphia, PA, USA (M. Solomon); Headache Care Center, Springfield, MO, USA (R.K. Cady); Philadelphia, PA, USA (L. Janoff); Mayo Clinic, Rochester, MN, USA (R.D. Sheeler); Patient advocate, Washington, WV, USA (T. Robert); Department of Nursing, Thomas Jefferson University Hospital, Philadelphia, PA, USA (J. Yocum); New England Center for Headache Stamford, Stamford, CT, USA (F.D. Sheftell).
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  • Robert D. Sheeler MD,

    1. From Department of Neurology, Thomas Jefferson University, Philadelphia, PA, USA (W.B. Young); Department of Sociology, Rutgers University, New Brunswick, NJ, USA (J. Kempner); Division of Headache and Pain, John R. Graham Headache Center, Boston, MA, USA (E.W. Loder); Headache, Plymouth, MA, USA (J. Roberts); Department of English, University of British Columbia, Vancouver, BC, Canada (J.Z. Segal); Temple University, Philadelphia, PA, USA (M. Solomon); Headache Care Center, Springfield, MO, USA (R.K. Cady); Philadelphia, PA, USA (L. Janoff); Mayo Clinic, Rochester, MN, USA (R.D. Sheeler); Patient advocate, Washington, WV, USA (T. Robert); Department of Nursing, Thomas Jefferson University Hospital, Philadelphia, PA, USA (J. Yocum); New England Center for Headache Stamford, Stamford, CT, USA (F.D. Sheftell).
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  • Teri Robert PhD,

    1. From Department of Neurology, Thomas Jefferson University, Philadelphia, PA, USA (W.B. Young); Department of Sociology, Rutgers University, New Brunswick, NJ, USA (J. Kempner); Division of Headache and Pain, John R. Graham Headache Center, Boston, MA, USA (E.W. Loder); Headache, Plymouth, MA, USA (J. Roberts); Department of English, University of British Columbia, Vancouver, BC, Canada (J.Z. Segal); Temple University, Philadelphia, PA, USA (M. Solomon); Headache Care Center, Springfield, MO, USA (R.K. Cady); Philadelphia, PA, USA (L. Janoff); Mayo Clinic, Rochester, MN, USA (R.D. Sheeler); Patient advocate, Washington, WV, USA (T. Robert); Department of Nursing, Thomas Jefferson University Hospital, Philadelphia, PA, USA (J. Yocum); New England Center for Headache Stamford, Stamford, CT, USA (F.D. Sheftell).
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  • Jennifer Yocum RN,

    1. From Department of Neurology, Thomas Jefferson University, Philadelphia, PA, USA (W.B. Young); Department of Sociology, Rutgers University, New Brunswick, NJ, USA (J. Kempner); Division of Headache and Pain, John R. Graham Headache Center, Boston, MA, USA (E.W. Loder); Headache, Plymouth, MA, USA (J. Roberts); Department of English, University of British Columbia, Vancouver, BC, Canada (J.Z. Segal); Temple University, Philadelphia, PA, USA (M. Solomon); Headache Care Center, Springfield, MO, USA (R.K. Cady); Philadelphia, PA, USA (L. Janoff); Mayo Clinic, Rochester, MN, USA (R.D. Sheeler); Patient advocate, Washington, WV, USA (T. Robert); Department of Nursing, Thomas Jefferson University Hospital, Philadelphia, PA, USA (J. Yocum); New England Center for Headache Stamford, Stamford, CT, USA (F.D. Sheftell).
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  • Fred D. Sheftell MD

    1. From Department of Neurology, Thomas Jefferson University, Philadelphia, PA, USA (W.B. Young); Department of Sociology, Rutgers University, New Brunswick, NJ, USA (J. Kempner); Division of Headache and Pain, John R. Graham Headache Center, Boston, MA, USA (E.W. Loder); Headache, Plymouth, MA, USA (J. Roberts); Department of English, University of British Columbia, Vancouver, BC, Canada (J.Z. Segal); Temple University, Philadelphia, PA, USA (M. Solomon); Headache Care Center, Springfield, MO, USA (R.K. Cady); Philadelphia, PA, USA (L. Janoff); Mayo Clinic, Rochester, MN, USA (R.D. Sheeler); Patient advocate, Washington, WV, USA (T. Robert); Department of Nursing, Thomas Jefferson University Hospital, Philadelphia, PA, USA (J. Yocum); New England Center for Headache Stamford, Stamford, CT, USA (F.D. Sheftell).
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  • Disclosures: Dr. W. Young is responsible for conception and design, analysis and interpretation of data, drafting the manuscript, revising the manuscript for intellectual content, and final approval of the completed manuscript. Drs. J. Kempner and E. Loder are responsible for conception and design, the acquisition of data (creation of data), analysis and interpretation of data, drafting the manuscript, revising the manuscript for intellectual content, and final approval of the completed manuscript. Drs. J. Roberts, J. Segal, M. Solomon, R. Cady, and T. Robert are responsible for the acquisition of data (creation of data), analysis and interpretation of data, drafting the manuscript, and final approval of the completed manuscript. L. Janoff, Dr. R. Sheeler, J. Yocum, and Dr. F. Sheftell are responsible for the acquisition of data (creation of data), analysis and interpretation of data, revising the manuscript for intellectual content, and final approval of the completed manuscript.

  • Conflict of Interest: Dr. W. Young has received funding for travel and speaker honoraria from Allergan, GlaxoSmithKline, Iroco, Merck, and Zogenix; serves as a consultant for Merz Pharmaceuticals; received research support from AGA Medical, Advanced Bionics, Advanced Neuromodulation Systems, Allergan, Capnia, Chorus (Lilly), Eli Lilly, Endo Pharmaceuticals, GlaxoSmithKline, MAP Pharmaceuticals, Medtronic, Minster, National Institute of Neurological Disorders and Stroke/National Institutes of Health, NuPathe, and Valeant; and receives royalties from Migraine and Other Headaches (2004) published by Demos Medical. Dr. J. Kempner reports no disclosures. Dr. E. Loder serves as research editor for the British Medical Journal. Dr. J. Roberts is employed as the Executive Editor of Headache: The Journal of Head and Face Pain. Drs. J. Segal and M. Solomon report no disclosures. Dr. R. Cady received funding for travel and speaker honoraria from Astellas, Endo Pharmaceuticals, GlaxoSmithKline, KOWA Pharmaceuticals, MAP Pharmaceuticals, Meda Pharmaceuticals, Merck, Minster, Nautilus Neuroscience, NuPathe, Ortho-McNeil Neurologics, Prometheus Labs, and Zogenix; received research support from Advanced Neuromodulation, Allergan, AstraZeneca, Boston Scientific, Endo Pharmaceuticals, GlaxoSmithKline, Johnson & Johnson, MAP Pharmaceuticals, Merck, Puramed BioScience, Wyeth, and Zogenix; and receives royalties from publishing and does hold some patents. L. Janoff, Dr. R. Sheeler, Dr. T. Robert, and J. Yocum report no conflict. Dr. F. Sheftell has served on advisory boards for GlaxoSmithKline, Merck, MAP Pharmaceuticals, NuPathe, Optinose, and Novartis; is on the speaker's bureaus for Merck and GlaxoSmithKline; has received grant support from Pfizer; has an intellectual property patent for montelukast and leukotriene modifiers for migraine and neuroinflammatory disorders; and is an associate editor for the journal Headache Currents.

W.B. Young, Headache Center, Thomas Jefferson University Hospital, 111 South Eleventh Street, Gibbon Building, Suite #8130, Philadelphia, PA 19107, USA.

Abstract

Medical language has implications for both public perception of and institutional responses to illness. A consensus panel of physicians, academics, advocates, and patients with diverse experiences and knowledge about migraine considered 3 questions: (1) What is migraine: an illness, disease, syndrome, condition, disorder, or susceptibility? (2) What ought we call someone with migraine? (3) What should we not call someone with migraine? Although consensus was not reached, theresponses were summarized and analyzed quantitatively and qualitatively. Panelists participated in writing and editing the paper. The panelists agreed that “migraine,” not “migraine headache,” was generally preferable, that migraine met the dictionary definition for each candidate moniker, terms with psychiatric valence should be avoided, and “sufferer” should be avoided except in very limited circumstances. Overall, while there was no consensus, “disease” was the preferred term in the most situations, and illness the least preferred. Panelists disagreed strongly whether one ought to use the term “migraineur” at all or if “person with migraine” was preferable. Panelists drew upon a variety of principles when considering language choices, including the extent to which candidate monikers could be defended using biomedical evidence, the cultural meaning of the proposed term, and the context within which the term would be used. Panelists strove to balance the need for terms to describe the best science on migraine, with the desire to choose language that would emphasize the credibility of migraine. The wide range of symptoms of migraine and its diverse effects may require considerable elasticity of language.

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