Change CFS into a different name or only drop it?


I think chronic fatigue syndrome (CFS) is not good as a name on myalgic encephalomyelitis (ME). In clinical work it will be to much confusion with a disease (CFS) and a symptom (chronic fatigue) having very similar names. Only the word "syndrome" differentiates them. If a doctor writes "chronic fatigue" in a patients journal, a high degree of uncertainty will arise whether he/she refers to "chronic fatigue" or "chronic fatigue syndrome", as there is a tendency in clinical practice to drop parts of names. I would then suggest to use ME instead in order to remove this uncertainty.


I think that CFS could be dropped as a name and that we stay with ME as the single term for ME. If a new term indeed is wished I would suggest to use a term like "Mirzas disease", "Sigurdssons disease" or "Iceland disease". Often diseases are named after the discoverer of the disease or after the geographic location of the first known case. I think it could also be possible to use the name after the first known victim of ME in order to honour him/her.


One advantage of dropping CFS all together and stick to ME is that it will result in a harmonization of the disease name. Now, the medical scientific research community uses CFS in their scientific papers and WHO uses ME in ICD-10.


I think that the "syndrome" part of a disease name adds very little of information and it my suggestion is not to use "syndrome" in a future name. Likewise "chronic" also adds very little information. The use of "chronic" indicates to me that a  non-chronic variant of the disease exists. Also, as explained earlier problems will arise in clinical practice if the meaning will change if parts of the names are dropped and if then the meaning changes. So please, do not use "chronic" of "syndrome" in a future name that replaces CFS, especially not if the meaning will be changed if the word is dropped.


I suggest to use a name that does not try to explain what type of disease it is. The use of cardinal symptoms or causative physical defects/dysfunctions should best be avoided, I think. Especially in our case with a multi symptom disease with no yet known single cause.


Let us be inspired by names as for example: Alzenheimer, Tourette, Wernicke-korskoffs syndrome, Huntingtons diseases, Parkinsons, Creuzfledt-Jacobs disease, Guillain-Barrés syndrome, Münchenhausen, Ménières disease, Bornholms disease, Raynauds phenomenon, Von Willebrands disease, Sjögrens syndrome, Becets syndrome, Tay-Sachs disease and Graves' disease.


I am not sure where the first known outbreak of ME is. If it is in Iceland, then "the Iceland disease" could be a possible candidate of a name to replace CFS. I do not know if there was a first person to "discover" ME. I do not know which person that first identified ME as a separate disease, if it was Sigurdsson from Reykjavik, CFS could be renamed to "Sigurdssons disease". If we would like to honour somebody that has suffered from bad treatment, we could maybe call it "Mirza's disease", but of course it must be accepted by her family.


An alternative approach could be to name the disease to "Sisyphos disease". Sisyphos was a king in Greek mythology that outwit/duped death. As punishment he had to work in underearth to repeatedly for eternity roll up a rock uphill a mountain, from where it fell down again. From there, a "Sisyphos work" is a work that last for ever and never yields no result.


I do not think neuroendocrineimmuno dysfunction, or something like it,  would be a good name to replace CFS, because there are many diseases that are suspected to involve the neuroendocrineimmune system. Some of them are: Organophosphorus (OP) (pesticides, nerve agents), Gulf War Syndrome (GWS), Multiple Chemical Sensitivities (MCS), Fibromyalgia Syndrome (FMS), Myalgic Encephalomyelitis (ME), Multiple Sclerosis (MS) and Acquired Immuno-Deficiency Syndrome (AIDS). The result of using neuroendocrineimmuno dysfunction, would be that we still have a term that is not unique, and can include many diseases. Also, I believe that in the future when more is learned about the neuroendocrineimmune system, many more diseases pertaining to this system will be identified.


Finally, I would like to say that I think CFS could be dropped completely and that we could stick to ME as the single term for ME. There is no really hurry to get a second name as long as we talk about the same disease. But indeed, I do agree that a new name would be needed if ME and (former) CFS are not considered to be the same condition.