Signatures 2587 total
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Name: Peter Ruberry on Apr 15, 2009Comments: 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 MEFlag
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Name: Irene Thorpe on Apr 15, 2009Comments: 20 years of being messed around. I would like some answers and treatment now . The faster the better thank youFlag
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Name: Laurence Swift on Apr 15, 2009Comments: 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.Flag
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Name: Michele E Townsend on Apr 15, 2009Comments: This is very important to those of us that carry this diagnosis.Flag
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Name: Veronica Jones on Apr 15, 2009Comments: It is time to get rid of the woolly definition that includes too broad a group of patients thus muddying research resultsFlag
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Name: Linda Wish on Apr 15, 2009Comments: 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..Flag
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Name: Rosie Cox on Apr 15, 2009Comments: 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.Flag
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Name: Anonymous on Apr 15, 2009Comments: 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 TMHFlag
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Name: Karen M. Campbell on Apr 15, 2009Comments: On behalf of 225 members of CFS Facts support groupFlag
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Name: Elsie A. Owings on Apr 15, 2009Comments: 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.Flag
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Name: Sarah LaBelle on Apr 15, 2009Comments: The research following publication of the empiric defintion shows a need for this change.Flag
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Name: Patricia Fero on Apr 15, 2009Comments: 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.Flag
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