Comments on: Chronic Fatigue Syndrome – CHANGE the NAME (ME/CFS/CFIDS)

By: grdnsmt

grdnsmt — Wed, 03 Mar 2010 08:13:36 +0000

Thank you, it was beautifully done.

By: kylereinhard1

kylereinhard1 — Wed, 03 Mar 2010 07:35:05 +0000

My specialist is on the committee to change the name! For sure any title with “fatigue” in it trivializes the seriousness of the illness. Nothing bothers me more than when I’m discussing my illness with acquaintances and hear things like “I’m tired every morning when I wake up! Maybe I have it!”

By: SANDMANCASTHISSPELL

SANDMANCASTHISSPELL — Wed, 03 Mar 2010 07:08:41 +0000

love your video

By: OneGirlArmy

OneGirlArmy — Wed, 03 Mar 2010 06:54:14 +0000

Personally, both names don’t make much sense. The term M.E. stands for medical terms that distinguish something wrong with your brain or spine. CFS also trivializes the illness.

CFIDS is a bit more acceptable of a name because it brings to the table the idea of immunodeficiency or Post Viral Fatigue.

By: Kirra2005

Kirra2005 — Wed, 03 Mar 2010 06:08:57 +0000

Grnygnbad

Excellent. Beautifully done. Thank you for using devices available to you to help people understand this confusing, frustrating illness.

By: wendelaurel68

wendelaurel68 — Wed, 03 Mar 2010 05:25:32 +0000

If more people die of this illness, or complicationns of, then would the name change. ? Well spoken, My heart goes with you all who suffer.

By: DrFrankyDolan

DrFrankyDolan — Wed, 03 Mar 2010 04:51:42 +0000

We would not need to change the name if it were to be more understood by the masses. I do agree though that the name is terrible. Fatigue is more of a result of what is happening in the body, not the culprit!

That is why we must continue to honestly raise sincere awareness. I have begun a video series about my CFS experiences and I encourage others to do the same… I wish love and health to us all!

Dr Franky Dolan

By: BretagneShrew

BretagneShrew — Wed, 03 Mar 2010 03:58:30 +0000

calling someone with ME a “cfs” patient is like calling a black person a nigger. its a demeaning term that has significantly impacted alot of our lives, compounding the problems we already suffer. As the term has resulted in widespread emotional suffering amoungst the patient group its a term that really should be ditched or deamed derogatory.

By: BretagneShrew

BretagneShrew — Wed, 03 Mar 2010 03:02:44 +0000

no, they’d just deny that they died of this illness like they already do. a woman who lives about an hour away from me died of ME about a month ago. she had it post-ebv infection if I recall.

By: KitKat223344

KitKat223344 — Wed, 03 Mar 2010 02:22:05 +0000

Yeah I always say I have an auto-immune associated disorder and suffer from chronic fatigue. (I’m not officially diagnosed, they most likely say its Undifferenciated Mixed Connective Tissue Disorder) Most people don’t understand that chronic fatigue syndrome is a serious multi-system illness that is more than being, “tired,” or “lazy”, or depressed (and not trivializing depression what so ever). But they can’t change the name unless they find one that what its actually caused by.