According to ImmuneSupport.com, there have been many people writing in letters sharing their concerns, thoughts and ideas for the upcoming name change for the Fighting For A Fair Name campaign.
Some of the concerns were that people said that ME should only stand for Myalgic Encephalomyelitis, while other patients said that ME should only mean Myalgic Encephalopathy.
Some patients in England & Australia are concerned that the U.S. definition for Chronic Fatigue Syndrome is not as strict as the definition of Myalgic Encephalomyelitis (ME) in their country. They feel that because of this, the name should not be changed to include anything with ME in it.
Rick Carson doesn’t feel that way. Here were his thoughts:
Their conclusion may be sound, though I doubt that many U.S. patients would share their view. It is here, after all, that Chronic Fatigue Syndrome damages patients every minute of every day.
There are still some patients that think the name Chronic Fatigue Syndrome is just fine as it is and that the name should not be changed. They can’t figure out what all the fuss is about. Others felt that ME was the perfect acronym because it stands for Myalgic Encephalopathy and Myalgic Encephalomyelitis.
Rick Carson says the important thing is that people are sharing their thoughts and their voices are being heard. If you want your voice heard on the name change subject, you can email your thoughts, concerns and ideas to the email address below:
We do need a change in the name of this condition.
Firstly, Chronic Fatigue Syndrome does not cover the extent of the effects this condition has on a patient’s life. To the uninitiated, the name implys that the patient is just tired and they should “pull themselves together”.
Secondly, the name suggested, myalgic encephalomyopathy, although, near enough medically accurate, sounds to the patient and the wider world, weak and winsome. It doesn’t convey the way the condition manifests itself in the patient and the effect it has on the quality of their lives’.
Thirdly, the best name, is the original, Myalgic Encephalomyelits. This is because it is medically accurate, it conveys that the condition is of viral origin, it hijacks “mission control” in your brain and screws up every system in your body and leaves you – the patient – in an unholy mess; and, best of all, this name packs a punch. It implys “this is serious, do something about it!”. Which is exactly what we need. Take ME Seriously!
I’ve had the lot. Chronic pain. Illness.
But been ok.
This is a nuclear bomb to the brain and body.
As a psychologist, I know CBT has no place with true M.E.
There is no benefit from “pacing”. It’s time now, they acted.
It is truly horrific.
Why is the UK so slow? This is causing deaths. Or living deaths.
Nicky M B.Rd (Hons). Dip/ Psych. C.Consul.