CDC CFS research should not involve the empirical definition (2005)

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1. 1
   Name: Jill Cooper on Apr 15, 2009

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2. 2
   Name: Keith Riley on Apr 15, 2009

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3. 3
   Name: Peter Ruberry on Apr 15, 2009

   Comments: Definitions are now so broad as to include almost anyone feeling a bit off colour. WE should get back to the Melvin Ramsay definition of ME

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4. 4
   Name: Anonymous on Apr 15, 2009

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5. 5
   Name: Ellen Goudsmit on Apr 15, 2009

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6. 6
   Name: Jenny Wilson on Apr 15, 2009

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7. 7
   Name: Irene Thorpe on Apr 15, 2009

   Comments: 20 years of being messed around. I would like some answers and treatment now . The faster the better thank you

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8. 8
   Name: Laurence Swift on Apr 15, 2009

   Comments: The most precise definition of ME is the "Canadian Definition", which precludes many non-ME diagnoses. The present broad definition incoporates too many general cases of non-ME states to make any research valid. These non-ME cases should be called "CFS" and true ME listed separately.

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9. 9
   Name: Michele E Townsend on Apr 15, 2009

   Comments: This is very important to those of us that carry this diagnosis.

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10. 10
    Name: Veronica Jones on Apr 15, 2009

    Comments: It is time to get rid of the woolly definition that includes too broad a group of patients thus muddying research results

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11. 11
    Name: Anonymous on Apr 15, 2009

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12. 12
    Name: Linda Wish on Apr 15, 2009

    Comments: The 2005 definition flies in the face of calls for subgrouping CFS patients to account for possibly different etiologies and pathologies. Instead, the original CFS/ME has been dissipated in a wide far-ranging heterogeneous group wtih vague symptoms ignoring the specific post-exertional problems patients have and the neurological problems that need research and treatment..

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13. 13
    Name: Anonymous on Apr 15, 2009

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14. 14
    Name: Dr John Greensmith on Apr 15, 2009

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15. 15
    Name: Rosie Cox on Apr 15, 2009

    Comments: I have had this illness since 1970. I too want movement in research into this illness which will not happen until reserach uses cohorts based on appropriate definitons of which the CDC Reeves 2005 is not one. I would prefer the use of the Canadian Consensus Document, or more pertinently the Ramsay selection criteria which have much greater specificity for ICD10 ME.

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16. 16
    Name: Annette Barclay on Apr 15, 2009

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17. 17
    Name: Perry Townsend on Apr 15, 2009

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18. 18
    Name: Gail R. Kansky on Apr 15, 2009

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19. 19
    Name: Elizabeth McPhillips on Apr 15, 2009

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20. 20
    Name: Penny Green on Apr 15, 2009

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21. 21
    Name: C Johnston on Apr 15, 2009

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22. 22
    Name: Marcus Doolette on Apr 15, 2009

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23. 23
    Name: Anonymous on Apr 15, 2009

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24. 24
    Name: Sarah Owens on Apr 15, 2009

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25. 25
    Name: Kasper Ezelius on Apr 15, 2009

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26. 26
    Name: Anonymous on Apr 15, 2009

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27. 27
    Name: Rob Arnoldus on Apr 15, 2009

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28. 28
    Name: Alfhild Renbro on Apr 15, 2009

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29. 29
    Name: Rita Eckerman on Apr 15, 2009

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30. 30
    Name: Anonymous on Apr 15, 2009

    Comments: Go Tom Kindlon! many of us have fought the 1988 holmes lousy definition, the worse Fukuda 1994 "definition" and the overly broad reeves "chronic illness melange" as Kasper called it. us oldtimers are burned out. we need new blood to fight this terrible fight! TMH TMH

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31. 31
    Name: Hillary L. Culver on Apr 15, 2009

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32. 32
    Name: Anonymous on Apr 15, 2009

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33. 33
    Name: Anonymous on Apr 15, 2009

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34. 34
    Name: Anita Patton on Apr 15, 2009

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35. 35
    Name: Ciaran Farrell on Apr 15, 2009

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36. 36
    Name: Karen M. Campbell on Apr 15, 2009

    Comments: On behalf of 225 members of CFS Facts support group

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37. 37
    Name: Catherine C Larson on Apr 15, 2009

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38. 38
    Name: Anonymous on Apr 15, 2009

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39. 39
    Name: Elsie A. Owings on Apr 15, 2009

    Comments: Even though research on our disease is miserably underfunded, gene expression and other specific scientific research shows that CFS probably contains subcategories and needs to be studied in more, rather than less, specificity. Throwing the disease into a waste bin full of other fatiguing illnesses does nothing to further our research.

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40. 40
    Name: Karen Algerio on Apr 15, 2009

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41. 41
    Name: Liz Willow on Apr 15, 2009

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42. 42
    Name: Sarah LaBelle on Apr 15, 2009

    Comments: The research following publication of the empiric defintion shows a need for this change.

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43. 43
    Name: Anonymous on Apr 15, 2009

    Comments: Thanks Tom! Much needed petition.

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44. 44
    Name: Patricia Fero on Apr 15, 2009

    Comments: The Wisconsin ME/CFS Association board has discussed CDC research, and examined specific studies including subsequent publications using Wichita and Atlanta methodology to identify CFS patients. We conclude that the study of fatiguing illnesses in people across cultures is an important epidemiological endeavor. However, to call this CFS research and to fund it under that mechanism is wrong. We believe that ultimately the pathophysiology of a specific disease entity will be revealed by investigators interested in specificity. Inclusion of challenging contributions from international Myalgic Encephalomyelitis and CFS researchers is paramount in this process.

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45. 45
    Name: Joan Grobstein, M.D. on Apr 15, 2009

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46. 46
    Name: Frank Twisk on Apr 15, 2009

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47. 47
    Name: P. Simpson on Apr 15, 2009

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48. 48
    Name: Lillie Smith on Apr 15, 2009

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49. 49
    Name: Wallace Provost on Apr 15, 2009

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50. 50
    Name: Benjamin Di Pasquale on Apr 15, 2009

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