The name of this forum should change to M.E. Or CFS/ME

The name Chronic Fatigue Syndrome Trivializes the disease and many people around the world
don't use it anymore. Anyway can we have the name changed for this forum? Its time to move
forward. M.E. Or even CFS/ME will suffice IMO.

Thanks,

Johnny

Post Edited (johnnyboy07) : 9/7/2013 5:13:25 PM (GMT-6)

Great, thanks for the info.

Hey guys, yes I know what the CFS label can carry but we aren't here to make newspapers, doctors or the public at large happy, we are here to help each other through the maze of different diagnosis and general misinformation and to make this site available to any and all sufferers of this disease in all its incarnations. An example, I don't have ME or its possible I just haven't been tested, does that exclude me from this site? This is just my input, if you guys want to send a message to [email protected] you are absolutely free to do so.

Recoveryme2day said...
Hey guys, yes I know what the CFS label can carry but we aren't here to make newspapers, doctors or the public at large happy, we are here to help each other through the maze of different diagnosis and general misinformation and to make this site available to any and all sufferers of this disease in all its incarnations. An example, I don't have ME or its possible I just haven't been tested, does that exclude me from this site? This is just my input, if you guys want to send a message to [email protected] you are absolutely free to do so.

The reason for a name change is not to make newspapers or anyone happy...It's like you said, its to help each other. A name that demeans all of us will not do that. M.E. is now widely used as a replacement for CFS, but that doesn't mean CFS has to be ditched (for the sake of people who are confused). I just think M.E. should be included. We all know that suffering from this disease is only part of the dilemma. The other part is trying to explain and justify our symptoms to people who hear a name like Chronic Fatigue Syndrome and immediately tune us out. If we want to be treated well, respected and funded, we have to be the ones to demand that respect. We as patients SHOULD NOT stand for a name that demeans us. Nobody is going to change the for us, unless we demand it. That's just my opinion and I respect whatever opinion anyone has on this. Just my 2cents. Recoveryme2day, thanks for the Admins info.

stkitt said...
M.E. may or may not be the same as CFS (Chronic Fatigue Syndrome). This is because there are currently 10 different interpretative criteria for CFS, some with a psychiatric and others with an immunological specification. If the CFS criteria used involves damage to the Central Nervous System, then it could well be the same disease as M.E. Other CFS criteria used, especially the Oxford criteria, focus on patients whose fatigue could be of psychiatric origin and this is not M.E.

I think it's fair to say that ME/CFS is not fundamentally psychiatric. That's the exact misconception that most patients are fighting against. ME basically means swelling of the spine and brain. When a disease is as broad as CFS/ME, you are never going to narrow down a name that fits everyone's symptoms. Just the primary ones. The name Chronic Fatigue Syndrome is a HUGE reason why many of us are shunned. Its a huge reason why the medical community thinks we are a joke. Its a huge reason why we are not properly funded. Its a huge reason why many of us don't get Disability benefits. I don't care if there are a 100 different interpretative criteria for CFS. Until we demand to be respected, we won't. Until we demand a name change with some dignity, it won't happen. We will continue to be treated the way are until WE do something about it. I for one refuse to accept CFS. That's just my opinion and I respect everyone's opinion on this no matter how different from mine it is.

Really, Chronic Fatigue Syndrome is an umbrella term that encompasses a lot of different things in all likelihood. A "syndrome" is a set of symptoms or findings rather than a specific condition or disease.

Some may have CFS due to ME, others from EBV, others from different causes.

Judy2 said...
Really, Chronic Fatigue Syndrome is an umbrella term that encompasses a lot of different things in all likelihood. A "syndrome" is a set of symptoms or findings rather than a specific condition or disease.

Some may have CFS due to ME, others from EBV, others from different causes.

You and I understand that. The outside world does not, and they will not. That's why a name change is crucial. It's a demeaning name.

I disagree. I don't think people know what Chronic Fatigue is at all. Ask a random person to describe what Chronic fatigue is and they won't know a thing about it. I'm going to send an email to Peter. If the name is not changed, I will not be posting here anymore. I will not be a part of something associated with the REASON WHY we are shunned by doctors and people. I first posted here in 2005. Its time to be part of the solution, not the problem. So I will find a M.E. forum. Or at the very least a M.E./CFS. In this world you only get the respect you demand. If we don't demand to be respected with a respectable name, than its our very own fault for the way we are perceived. Wish everyone the best and hope you find a path full of health and happiness.

I think I may have this condition!
Cfs