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

  • Sheryl A. J
    • Comments
    • The CDC/NIH made a joke out of CFS/CFIDS/ME. It isn't funny.
    • Country/State
    • Alabama, USA
  • Hillary J. J
    • Comments
    • CFS was a name selected in 1988 by a small group of politically motivated and/or poorly informed scientists and doctors who were vastly more concerned about costs to insurance companies and the SSA than about public health. Their deliberate intention--based on the correspondence they exchanged over a period of months--was to obfuscate the nature of the disease by placing it in the realm of the psychiatric rather than the organic. In doing so, they also deliberately ignored a substantial body of published research on ME. The harm they have caused is surely one of the greatest tragedies in the history of medicine. The government scientists involved in this fraud should have been prosecuted years ago. Restore the name in the U.S.
    • Country/State
    • USA
  • PATRICIA A W
    • Comments
    • HOW MANY PEOPLE HAVE TO LOSE THEIR LIVES?
    • Country/State
    • ALABAMA
  • JAMES F W
    • Comments
    • WOULD YOU WANT A BLOOD TRANSFUSION FROM SOMEONE SUFFERING FROM THIS DISEASE?
    • Country/State
    • ALABAMA
  • Patricia L
    • Comments
    • Come on Fellas... and Rescue M.E... You can Pony with Tony... Twist with Steve nLee... but if your gonna MEss around... MEss around with M.E... You can cha cha with Lbee... stroll with Stone... Take M.E. by my little Hans... and go like this... now ya turn to the M... and turn to the E... now ... Your cookin n lookin good... doing the twist with M.E... ...... "Restore Myalgic Encephalomyelitis"...
    • Country/State
    • U.S.A./N.Y.
  • Beverly C
    • Comments
    • If the information I just read is correct=-Japan has had an outbreak of this disease among the working age class of approximately 30%. This means that not only are persons ill and not productive but must then be cared for and an become an expense. When you are a liability instead of an asset there is a double draw on the system. How long must this go on before the light goes on over the heads of those responsible????
    • Country/State
    • Strafford, New Hampshire
  • Daniel H
    • Comments
    • Give respect, restore dignity to our children, family and neighbors. We have all felt the backlash of your meaningless designer names. It's has been and still is Myalgic Encephalomyelitis.
    • Country/State
    • US/AZ
  • Gail Dahlen, RN M
    • Comments
    • **RE-CLAIM THE NAME** OF MYALGIC ENCEPHALOMYELITIS !!!!
    • Country/State
    • Indianapolis, IN USA
  • Alonzo W
    • Country/State
    • USA/North Carolina
  • Jolanta
    • Country/State
    • Cracow, Poland
  • Jean H
    • Comments
    • I would also like to see ME restored to its ICD9CM code of 323.9
  • Kate B
    • Comments
    • The Medical Profession's Prejudice toward my condition has greatly compromised my health care.
    • Country/State
    • FL
  • Irma Gross/Sid G
    • Country/State
    • Florida USA
  • Robin E. H
    • Comments
    • ill since 1987
    • Country/State
    • Tucson AZ USA
  • Robert F. Mulligan, MPA, Exec. Dir. G
    • Comments
    • This will be the first honest step our government has taken to support those of us that are tired of being sick and ridiculed.
    • Country/State
    • United States, Georgia
  • Meredith F
    • Country/State
    • NY
  • Steven Du P
    • Comments
    • Please quickly correct the mistake made when the disease, Myalgic Encephalomyelitis, was given the misleading name, CFS, in the U.S. The damage to seriously ill patients due to this unscientific name (CFS), has been extensive & must be halted.
    • Country/State
    • USA/California
  • Vicky G
    • Country/State
    • U.S.A./Florida
  • Patricia W
    • Comments
    • This illness requires, and deserves, so much more attention than it has been given. I fear, under our new administration, that medical care will be on the decline, instead of improving and therefore our country will remain the only wealthy country who refuses to offer everyone health care. I also fear that illness such as ours will lose the fight, because the current administration works strictly for BIG BUSINESS, and insurance companies are BIG BUSINESS. They certainly don't want to admit what a devastating illness this is, AND, they certainly don't want medical evidence of such. I'm affraid we are on a steeper uphill battle than ever before now. You may view my response as purely political hogwash if you are a republican who refuses to admit to yourself that our presidential election was stolen, & our country AND our healthcare is now being governed by big business, but for those of you - i urge you to print my words and read them again in four years.
    • Country/State
    • Missouri, USA
  • Judy L. M
    • Country/State
    • Belvidere, IL
  • LaVonne K W
    • Comments
    • We need validation and research monies!!!
    • Country/State
    • USA
  • Kay S
    • Comments
    • I Agree
    • Country/State
    • SC/USA
  • Marci L
    • Country/State
    • MA
  • Gloria H
    • Country/State
    • CA USA
  • Linda G
    • Country/State
    • Arizona, USA
  • Irene M
    • Country/State
    • USA Ohio
  • Becky D
    • Comments
    • Please end this demeaning fatigue fiasco and recognize ME.
    • Country/State
    • California
  • Stephanie H
  • Tricia C
  • Catherine M. A
    • Comments
    • We have suffered enough.
    • Country/State
    • USA
  • Bernard A. Kansky, E
    • Comments
    • The name, CFS, makes sufferers victims twice...once for the suffering and again for of intregrity and credibility due to the trivializing nature of the name
    • Country/State
    • MA, USA
  • Phyllis G
    • Country/State
    • North Carolina
  • PAUL S. C
    • Country/State
    • MA
  • Wanda S
    • Country/State
    • USA/CA
  • Joanne P
    • Country/State
    • NJ
  • Carla C
    • Country/State
    • MA
  • Meredith C. E
    • Country/State
    • USA/North Carolina
  • Angel G
    • Comments
    • Same goes for Canada Health!
    • Country/State
    • Canada
  • Adrienne C
    • Country/State
    • San Diego County, CA
  • Constance F. G
    • Country/State
    • USA/WISCONSIN
  • SUSAN C
    • Comments
    • WALK IN MY SHOES FOR ONE WEEK
    • Country/State
    • POLK, FLORIDA
  • Susan L
    • Comments
    • This is a devastating illness, we need awareness, support and research $ess and sup
    • Country/State
    • Minnesota, USA
  • Jenny
  • B.G.Meyer
    • Comments
    • You CanFreeuS from the Stigma of "CFS"!
    • Country/State
    • Florida, USA
  • Rita S
    • Comments
    • Abolish CFS - a trivial and erroneous name for a serious illness that requires far more serious attention! People have suffered too long due to the foot-dragging and shunning by federal health agencies when it comes to this illness.
    • Country/State
    • Massachusetts, USA
  • Linda R
    • Country/State
    • USA - Virginia
  • Hilda
    • Comments
    • DO SOMTHING
    • Country/State
    • Texas
  • Marie S
    • Comments
    • This illness affects every aspect of our lives and it not something I would wish on anyone.
    • Country/State
    • USA New York
  • Jennie L. S
    • Country/State
    • IN
  • Ann B
    • Comments
    • Since eighth grade my daughter has been in bed for six months twice. once in the eighth grade following coxsackie virus and again in the tenth grade. She is now in her senior year and misses about one third of her classes. Next year she will be going off to college, but I am not sure if she will be able to physically handle it. If something isn't done to find a cause and a cure I worry that she and others like her may not be able to function in the world of work. It is time to click onto myalgic encephalomyelitis and recognize it for what it is, a serious and debilitating disease.