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. |