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

  • Skip P
    • Comments
    • This affliction should be renamed TFLTGOOBS, or too fricken lazy to get out of bed syndrome. Powers to the Goobs!
    • Country/State
    • Of confusion
  • David L S
    • Comments
    • With a wife who has suffered tremendously from this illness, I want to show my support for this change
    • Country/State
    • USA/Arizona
  • gillian b
    • Comments
    • n/a
    • Country/State
    • united kingdom
  • Donna Gilman R
    • Comments
    • This is an opportunity that MUST be APPROVED! So many of the" SICK OF BEING TIRED" need a solid diagnosis confirmation so that these sufferers can be TREATED PROPERLY! This disorder is an auto immune dysfunction NOT JUST chronic faigue. PLEASE CHANGE this name so that the sick can start to "HEAL" This is CRUCIAL for the FUTURE.
    • Country/State
    • NEW YORK
  • Todd P
    • Country/State
    • MN
  • S.L. M
    • Comments
    • A disease should not be named by a layman's definition of symptoms. Myalgic Encephalomyelitis is more appropriate legally and medically.
  • Donna L. V
    • Comments
    • I have survived 19 years of this ill named disease
    • Country/State
    • New York
  • Faye B
    • Comments
    • Such recognition of ME is way overdue in Britain and in US
    • Country/State
    • UK
  • Kimberly D
    • Comments
    • Please act immediately; our lives and health depend upon it.
    • Country/State
    • Utah
  • Elizabeth E. S
  • Eadie H
    • Country/State
    • USA/Michigan
  • Deborah
    • Comments
    • Have Twin Sons That Have Been Suffering For Years
    • Country/State
    • U.S.A.
  • Ashley
    • Comments
    • I suffer from (currently titled) CFS. I am one of the lucky few to have an understanding team of doctors, etc. who recognize the seriousness of what I go through. I want to get better, and most of us do - but the seriousness of this disease is not accepted by all physicians and instead trivialized by a title that basically says "Oh, so you're just lazy all the time?". Please help people want to get better, instead of give up.
    • Country/State
    • USA
  • Francisca GutiŠ¹rrez C
    • Comments
    • RECONOCIMIENTO SFC EN EL MUNDO ENTERO
    • Country/State
    • SPAIN
  • Rheanna M M
    • Comments
    • Please help my disease get the respect it needs so Dr's will stop treating us like hypocodriacs. Dr's who don't believe have made my mother, my mothers mother and myself cry on many occations to the point we feel totaly helpless. Never the less we know that this disease is real and not in our heads. I am a third generation of daughters in my family to fall ill to this devestatingly persistant and mysterious illness. Please act as if your son. daughter, mother, father, wife or husbands quality of life was at stake and help the public to recognize Myalgic Encephalomyelitis as a serious and debilitating disease.
    • Country/State
    • Maryland, USA
  • L M
  • Jeff F
  • Carol E
    • Country/State
    • Oregon
  • Paul M
    • Comments
    • hopefully this will help
    • Country/State
    • NM, USA
  • Ron R
    • Comments
    • It has been too many years to deny that it exists. Please help provide funding for research that does not imply that it is all in our heads. No matter the name, millions across the globe have the same debilitating sysmptoms that are too often denied.
    • Country/State
    • USA/ Illinois
  • Francois L
    • Comments
    • The US should be a leader in this field and is already behind the Canadian Consensus.
    • Country/State
    • Canada
  • Paula A
    • Country/State
    • Texas
  • Jeff C
    • Country/State
    • MA
  • Rachael S
    • Country/State
    • Australia
  • Teresa R
    • Country/State
    • usa
  • Julie P
    • Comments
    • Please take action!
    • Country/State
    • USA/Ohio
  • Greggory B
    • Country/State
    • New Jersey
  • Jennifer G
  • Lawrence H. Good I
    • Comments
    • Condition is very SERIOUS!
    • Country/State
    • USA/Iowa
  • Jennifer R
    • Comments
    • Please help all of us with CFS/ME
    • Country/State
    • Indiana
  • garrett w
  • Jessica P
    • Country/State
    • South carolina
  • Barbara M
    • Country/State
    • USA, VA
  • Jesse P
    • Comments
    • Don't let suicide be the only way out. Help us Please!
    • Country/State
    • USA, WI
  • Imitrex
    • Comments
    • (a href=http://www.cheap-drugs-online.org/product_imitrex.htm) Buy Imitrex Online (/a) order imitrex online http://www.cheap-drugs-online.org/product_imitrex.htm
    • Country/State
    • USA
  • Jennifer S
    • Country/State
    • FL
  • Judith Fleet W
    • Comments
    • ME describes an illness (or group of related illnesses) on a very scientific/clinical basis. "CFS" does not and was developed for interesting issues in the history and sociology of science, that aren't based on any illness extant. Besides that the use of "CFS: is so undermining that paitnets like me often get treated like a hypochondriacal turkey. This is not the way to get decent medical care and is very undermining socially, when we know that social support and respect for the illness you have to say you have (you have ME but have to say you have "CFS") undermines the quality of my and others lives and reduces the quality of our care and of the social support that has been shown to be important to healing. It is scandalous.
    • Country/State
    • USA: Philadelphia, PA
  • ines d
    • Country/State
    • germany
  • Katie S
    • Country/State
    • New York
  • ingjerd a
    • Country/State
    • norway
  • Jill B
  • Emily C
    • Comments
    • I have had M.E. for 9 years. It took me three years to get a CFS diagnosis, during which time I could have benefited greatly from treatment. I feel that the delay in diagnosis, and therefore understanding of the need to adapt my lifestyle to the illness, severely compromised my chances for recovery and/or improvement. I've been unable to work or do household chores for 7 years.
    • Country/State
    • USA/CA
  • James M. Ross, P
    • Country/State
    • Colorado, USA
  • jim
  • Ira H
    • Country/State
    • Finland
  • Megan K W
    • Comments
    • I have been sick with ME since I was 4, I'm 25 now. The name means so much for care to take place. Please hear us!
    • Country/State
    • New Hampshire, US
  • Jill J
    • Country/State
    • U.S.A.
  • Jane
    • Country/State
    • United Kingdom
  • Julie K
    • Country/State
    • VA
  • M. I. R
    • Comments
    • I have just been diagnosed with CFS after years of battling ailments and not understanding why it was so hard to keep a job, I am an intelligent and articulate individual in 4-5 different languages and have diversified knowledge of different business practices. I have been diagnosed bipolar, major depression, had pleurisy, pneumonia, muscle aches and pains, back injury and athroscopic knee surgery. I have always worked and raised 3 beautiful and healthy children as a single parent. I am post menopausal and always want to jump over the hurdles independently, although I am now lucky enough to have a loving husband, but going through so much in the4 last years ie. loss of 2 siblings one just last year 2007, as well as, moving to another stateand other stressed and emotional situations. A new neighbor who watched me go through a living hell this last year begged me to have a few tests done Lyme disease because of a ring like rash I developed and after going from Dr to Dr. and Mental health center to M health
    • Country/State
    • Houston, TX