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By Donna Sumner & Gail Kansky

     Our fight to change the abusive and trivializing name of Chronic Fatigue Syndrome is ongoing but the Centers for Disease Control and Prevention (CDC) does everything in their power to perpetuate the harm they did when they changed the name in the late 1980's.  Our petition to the federal government has over 7,000 names that begs the federal government to call CFS by it's rightful name, myalgic encephalomyelitis (ME).  Those who sign agree that:

"We endorse the A CALL FOR ACTION: THE RECOGNITION OF MYALGIC ENCEPHALOMYELITIS AS A SERIOUS AND DEBILITATING DISEASE Petition to United States Department of Health and Human Services, National Institutes of Health, and Centers for Disease Control." 

     It has been brought up to the government and will continue to addressed.  Mary Collissa Weber wrote, "My 15 year old daughter became seriously ill with ME 10 years ago and remains ill.  Lack of understanding and belief on the part of others makes the affliction an exquisitely cruel double-edged sword. I know quite intimately this insidious disease -- I myself contracted it over 5 years ago.  I ask you, 'Which father among you will give his son a snake if he asks for a fish?  Or a scorpion if he asks for an egg?' (Luke 11:11) What are we asking for?  Simple --- what I would pray for you and yours..."  David Patterson wrote, "Renaming ME-itis to CFS was a mistake that has created unnecessary suffering due to barriers to research, treatment and support for people with this illness.  The sooner you correct this error (and restore ME-itis to the ICD9 to 323.9), the sooner you can alleviate this unnecessary suffering."

     Have they heard us?  Seemingly, it is all too apparent that they not only have heard us but it is only too obvious by the way they have dug in their heals refusing to do anything about it.  The CDC seems to feel that the way to do this is to confuse everyone with erroneous facts put forth on their website.  Under this illness, the CDC writes about "Similar Medical Conditions" that "have been described that have a similar spectrum of symptoms to CFS."  Under the mundane list that they present that have "chronic fatigue" associated with them is "myalgic encephalomyelitis."  This, despite knowing the world now, due to the influence of the CDC, now calls ME "CFS/ME."  This, despite knowing that the research world has used their own criteria for ME since they know CFS is just the name foisted upon them by an influential country.  This, despite knowing that the first carefully constructed clinical criteria by an international group of researchers calls it ME/CFS.  This, despite knowing well that it is impossible to convey the severity of an illness whose name merely denotes tiredness.  This, despite knowing the name conjures up incredulity and ridicule which is demoralizing.  This, despite knowing how the name has thwarted private fundraising efforts as nobody wants to give money to "tired people."  This, despite the CDC knowing full well that it is difficult, if not impossible, to find a chronic illness that does not include the symptom of "chronic fatigue."  This, despite this illness having been called ME since the 1950's.  This, despite even the Journal of the American Medical Association (JAMA) having to issue a news release containing a correction when they confused chronic fatigue with chronic fatigue syndrome saying "We regret the error and the confusion that it may have caused." 

In 1998, the National CFIDS Foundation wrote to ask the President of the United States for an official proclamation to declare May 12th National CFIDS Awareness Day.  We were informed that the President does not do this.  Our request had been turned down by an aide confused about the implication of the name.  Indeed, the U.S. presidents have declared days, weeks, and months for every other known disease as well as other things such as a national blood donor's week and a national spay day.  Although we had included a draft of reasons that showed the abnormalities proven by science, the name was what was seen.

In 1999, the National CFIDS Foundation joined the Medical Professionals with CFIDS (a now defunct group) and RESCIND, Inc. to have legislative action change the name.  The exact language for a bill attachment was given and the attachment to a bill was agreed upon.  The CFIDS Association of America (CAA), according to the legislative aide we kept in contact with, had convinced them it was not wanted or needed by the patient community!  Shortly after that, the CAA received massive funding from the CDC that continues to this day.  Do the patients not want a name change?  Every survey taken has shown they do. One survey done by the CAA showed 92% in favor of a name change.  Even a survey of medical professionals taken at a 1998 AACFS (American Association of Chronic Fatigue Syndrome) conference had the majority agreeing that they wanted a name change.  The highest scores, 96.3%, said they did not want "any term that tends to 'psychiatrize' CFS".  Although the CAA said they, too, were in favor of a name change, they added "Not at this time, however." Isn't it already years late in coming? All state associations surveyed wanted a change as well as all groups overseas that were surveyed.  It is interesting to note that when Philip R. Lee, M.D., the former U.S. Assistant Secretary of Health, strongly called for a name change, a federal committee (Chronic Fatigue Syndrome Coordinating Committee that preceded the current advisory committee), Anthony Komaroff, M.D. downplayed the survey taken of researchers and clinicians and the name change was, again, tabled as it had been for the previous two years.  The CFSAC (Advisory Committee) also dismissed this saying it was an agenda item from the previous committee.

Alan Gurwitt, M.D, a child psychiatrist from Harvard Medical School, said, "When there is so much accumulating evidence --- good science by good scientists...that tells us there is a biological illness going on...the name, the name..."  Seymour Grufferman, M.D. formally of the NIH's Institute of Cancer, said, "You are not going to get a fair shake if you call this 'chronic fatigue syndrome' because that carries with it a judgment."  The immediate past chairman of the CFSAC, David Sheffield Bell, M.D., said about the name, "It implies a benign condition of almost no has become obvious that CFS is not a minor or benign is a serious, debilitating disease that robs it's victims of both their health and dignity."  James Jones, M.D.  said, "It's awful...the CDC has a reputation for presenting accurate information, but this time it was way out of trivialized the whole thing and fueled critics of the disease..."  Yet, now Dr. Jones works for the CDC and publishes on trite studies done on CFS. 

The name of this illness was and is ME.  The former head of the HHS (Health and Human Services), Donna Shalala, on a live ABC News chat in 1998, was asked about changing the name by a patient.  She answered, "I am not a scientist or a physician.  In terms of naming a disease, that is done by the scientist studying the disease. ..."  Yet "scientists" had already named this disease when the CDC changed the name.

Of the thousands that have signed the petition to change the back to ME by the NCF and RESCIND, Inc., Adrienne Walls said, "Aside from the illness itself, nothing has hurt CFS patients more than the current U.S. name."  Bernard Kansky, Esq.  said, "The name, CFS, makes sufferers victims twice..." while Judith Silverman wrote, "This is a very debilitating illness and the current name trivializes it.  We have encephalitis, not just fatigue."  The 7,392nd signer of the petition wrote, "We need not only the name of this disease to change back to it's original name of ME, but information regarding ME/CFIDS should be sent to every doctor in the nation as well as the Canadian Consensus on ME/CFS..."  but one put it most succinctly when she wrote, "Walk in my shoes for one week."  RESCIND's president, Thomas Hennessy, Jr. wrote, "It is about time!"  It was "about time" many years ago when Tom joined us to write the petition that is online.

Well, it's past time, and the CDC is continuing to hide the truth. This petition is ongoing and the names continue to mount.  It can be accessed by clicking here.  For those who do not have access to a computer, names can be added by sending them in to the National CFIDS Foundation.

The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 * (781) 449-3535 Fax (781) 449-8606