 |
Your voice is important. Your opinions, feedback and concerns are the most relevant - you are who we are fighting for! Feel free to check back often and follow the conversation.
Return to message board topics
Login
|
Why all the fuss about names?
|
Posted by: LM
February 17, 2008 |
This explains the fuss!
Myalgic Encephalomyelitis [MEitis] has been known ever since 1934 and has been recognized by WHO since 1969, long before CFS was invented. MEitis hasn't changed. Far too many people still get very ill with MEitis.
The need for another name than CFS - an umbrella term - is very understandable and can only be supported. But what cannot be supported is the intention to replace CFS with ME obviously without at the same time adopting the existing ME definition (Ramsay 1988).
No matter how much I respect the work, the skills, the personalities of the advocates behind this campaign, this is historically, medically and diagnostically wrong.
Reading the info on A Fair Name Campaign at http://www.afairname.org/
made me think, that this must be a last desperate try before closing down on Myalgic Encephalomyelitis - a well defined neurological disease, recognized by the WHO and by the Health authorities of several countries outside the US.
People in these countries actually suffer from ME - they do NOT
suffer from "Myalgic Encephalopathy [MEopathy]" or Post Viral Fatigue Syndrome [PVFS] and least of all from CFS. In the 80's and the early 90's, MEitis was on its way to be accepted and respected - until names like PVFS and CFS showed up - and with them the huge and devastating interest of the psychiatrists, which we all are too familiar with - God help us!
No proper definitions are attached to PVFS, CFS and MEopathy. The CFS definition is mostly a laugh because it is so broad that almost any disease can fit into these criteria, and do take into consideration, that this has screwed up many years of vital research into MEitis. WE - the MEitis patients - are paying an unacceptable high a price for this.
PVFS is not identical to MEitis (according to Ramsay). In many countries PVFS is mostly viewed as a post-infectious condition with a fairly good prognosis, and which will typically, although not necessarily, fade away within a couple of years. This is definitely not a correct picture of ME.
ME-opathy can mean any disease in the brain - including MEitis. MEopathy has no specific definition and it is not classified by the WHO or anywhere else.
And Mr. Carson asks: Why the fuss?
No signs of MEitis? This is not true. The first researchers doing studies on MEitis certainly did find signs of MEitis when doing autopsies. That's why WHO classified MEitis as a neurological disease in the first place. Today researchers still find signs of MEitis also by using brain scans. And for what it's worth: we, who do suffer from MEitis, have no doubts whatsoever about a previous or existing MEitis. We either suffer from it directly every single day of our lives or suffer from it occasionally when having done too much or it reoccurs from time to time. It's gives such special symptoms, that having it once when falling ill, you will never forget how it is like.
Do we want to be labelled as having diseases we do not suffer from? Do we want people with other - maybe treatable disease - to be labelled with a serious disease they do not suffer from?
We certainly don't. Physicians, researchers and psychiatrist shouldn't want this either.
Mr Carson writes: "'ME' is considered by most physicians and patients to be historically and diagnostically correct, and it has been used worldwide to describe the disease for close to 50 years."
Exactly - so why don't you stick to MEitis!
You have all the good reasons to do this. And you have no reasons to link it to CFS, which per definition hasn't much - if anything - to do with ME. Because some CFS diagnosed people inevitably suffer from ME doesn't make CFS identical to ME.
Therefore, it's historically, medically and diagnostically incorrect to switch CFS to ME WITHOUT at the same time adopting the already existing definition for MEitis. Also I personally find it unethical!
Lajla Mark
www.MEsite.dk/
|
 |
Reply 
|
|
The fuss
|
Posted by: grannycfs
February 18, 2008 |
Hi,
I think you may not be aware of the total plan that is to create a clinical case definition, which was never done for this country. I believe the intention is to use the Canadian definition for a model. But I do hope they realize that the simplist road to take is to adopt MEitis. I'm not a professional but a patient of 23 years. And since I've had to suffer through all the nonsense created with the erroneous name of CFS, I feel I'm qualified to say that based on what I've read - and that's everything I can get my hands on - I have a copy of Dr. Hyde's book - I believe I have had M.E.itis. I probably wouldn't qualify as I am today because my health has slowly improved ovr. I am not cured but certainly better.
But as a support group co-leader, I see and talk to people who are dreadfully ill and they are being cheated out of appropriate healthcare because M.E.itis was not adopted.
I think most people think the way I do who have suffered with this disorder and want the name corrected and an appropriate defintion put in place so doctors know what the heck we have.
Granny |
| |
|
| |
|
|
|
|
