A CALL FOR ACTION: THE RECOGNITION OF MYALGIC ENCEPHALOMYELITIS AS A SERIOUS AND DEBILITATING DISEASE

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We, the undersigned, respectfully demand that Myalgic Encephalomyelitis (ME), an internationally recognized neurological disease, be also formally recognized as a distinct clinical entity in the United States by the National Institutes of Health and the Centers for Disease Control. It is time to make the case definition/diagnostic criteria explicit in the name.

Currently, most patients are diagnosed with Chronic Fatigue Syndrome, a poorly defined, misunderstood, controversial syndrome which remains underfunded and underresearched. The name Chronic Fatigue Syndrome itself has trivialized the illness and further subjected these patients to incredulity and ridicule. The CFS rubric has not only neglected and failed to help those with ME, it has harmed them. ME patients will not improve with cognitive behavioral therapy (CBT) or graded exercise (in fact, exercise will make them worse) - yet these are considered treatments for CFS. Simply "renaming" CFS will not solve this problem.

ME should not be considered a subset of CFS, for the hallmarks of ME will not be present in the population of CFS patients once the Ramsay criteria are established in the US. Patients with Myalgic Encephalomyelitis under the CFS criteria must wait for six (6) months before acquiring a diagnosis, a critical period in which possible recovery is diminished by lack of proper treatment. The ME definition does not require a six month wait. (See Ramsay Definition at: http://www.egroups.co.uk/message/ME-itis_NOW/2.)

We, the undersigned, are "tired of being sick, not sick of being tired."



To read a complete discussion of the points outlined here, we suggest you
visit http://www.egroups.co.uk/message/ME-itis_NOW/

8574 Signatures

  • cyn
  • M.L. B
    • Country/State
    • Netherlands
  • Donna Z
    • Country/State
    • Illinois
  • Christine Z
    • Country/State
    • USA, California
  • Bonita May D
    • Comments
    • I agree that CFC be changed to read Myalgic Encephalomyelitis
    • Country/State
    • Canada
  • Beverly H
    • Country/State
    • USA/Hawaii
  • David D
    • Country/State
    • USA/MO
  • Ingeborg
    • Comments
    • I am a CFS/FM sufferer since probably I am 6 years old, that is now for 24 years. I have not choicen to be sick. see my homepage www.borgofspace.com
    • Country/State
    • The Netherlands
  • Mitchell A
    • Country/State
    • Sorrento, Florida
  • Elizabeth S. H
    • Comments
    • It is time you accept responsibility for dismissing a very real and devastating disease...your first step in the right direction would be to give it its proper name: Myalgic encephalomyelitis.
    • Country/State
    • Epping, New Hampshire USA
  • Clytie Anne S
    • Comments
    • the suffering and waste of human beings is appalling
    • Country/State
    • South Australia
  • Dee
    • Comments
    • I've had fms for 18yrs. can't work,sleep,or socialize either, please help us all.
    • Country/State
    • U.S.A./CA
  • Lois A. S
    • Country/State
    • Wilmington, DE
  • Cheryl K
    • Country/State
    • Pennsylvania, USA
  • Dana G
    • Country/State
    • Connecticut
  • Juanita M. M
    • Comments
    • Please, it's difficult enough dealing with the symptons, let me have an acceptable name for what I have
    • Country/State
    • United States/Californis
  • Brian W
    • Country/State
    • USA Connecticut
  • Kim
  • Bridget O' H
  • Peggy F
    • Comments
    • Too many people are sick. Call this disease what it is - Myalgic Encephalomyelitis.
    • Country/State
    • North Carolina, USA
  • Chris S
  • Brigitta P
    • Country/State
    • The Netherlands
  • Hilde D
    • Country/State
    • The Netherlands
  • Brooke A
    • Comments
    • The terms Chronic Fatigue Syndome trivialize what is a very real illness. People link the word Fatigue to their own tiredness and thus do not see the illness for the severity and debilitating nature that it is. It is time to make a change, to give recognition and validation to it's sufferers.
    • Country/State
    • Melbourne, Australia
  • Nirmala S
    • Country/State
    • Ontario, Canada
  • sherry b
  • d'Archambeau
    • Country/State
    • Belgique
  • Darryl A
    • Country/State
    • USA
  • Ciara M
  • Ciaran F
  • Beckie T
  • Richard X
    • Comments
    • About time this got dealt with. I have/have had several friends who deal with M.E., and I can see its not at all fun, and is a very real thing. Good Luck!
    • Country/State
    • Wiltshire, UK
  • Darlene S
    • Country/State
    • Canada
  • Cindy Conway S
    • Country/State
    • U.S.A.
  • David E. Hall, J
    • Country/State
    • Savannah, GA
  • Carole Del C
    • Comments
    • This is too widespread to be ignored!
    • Country/State
    • USA, Florida
  • David W
    • Comments
    • I already tell people that I have M.E. I'm sick and tired of trying to explain CFS or DFIDS and FMS to them and getting looked at as if I am crazy or lazy. I AM SICK AND IN PAIN EVERY DAY OF MY LIFE!
    • Country/State
    • California, USA
  • David W
    • Country/State
    • Bedfordshire, United Kingdom
  • Carolyn D. K
    • Comments
    • End this craziness,help us!
    • Country/State
    • Florida,USA
  • josje c
    • Country/State
    • the netherlands
  • Claire M
    • Country/State
    • Northern Ireland
  • CHRISTINE S
    • Country/State
    • KY. USA
  • Dawn H
  • DisAbled Women's Network O
    • Country/State
    • Canada
  • Karen S
    • Country/State
    • Ontario, Canada
  • Cheryl M
    • Comments
    • Parenting a child who has had this illness for 2 years. Fatigue is not the key to the debilitation of this illness. We need trained, specialized medical professionals. Personally, I'm fatiqued from trying to chase down someone who can help my child!
    • Country/State
    • USA/CA
  • Clara A
    • Country/State
    • Alabama/USA
  • David Bravo P
    • Comments
    • Do away with the CFS downplay/naysay name
    • Country/State
    • Puerto Rico, USA
  • Rev. C. Lynne W
    • Comments
    • 17+ YRS of this illness!
    • Country/State
    • Texas/USA
  • Connie A
    • Comments
    • The Arthritis Society
    • Country/State
    • Toronto, Canada