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

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johnnyboy07
New Member


Date Joined Sep 2013
Total Posts : 19
   Posted 9/7/2013 1:01 PM (GMT -7)   
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)


ladybugdreams
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 9/7/2013 4:52 PM (GMT -7)   
Johnny, I agree with you that the name Chronic Fatigue Syndrome is a terrible & demeaning name. As far as changing it, I don't know if this is possible, it would be up to the Admin of Healing Well to do it. You might write to them & see, if this is something you want to do. Our Moderator is Recoveryme2day, she may know. Hugs, Denise
Fibromyalgia-dx'd: 2006, ME/CFS-dx'd: 2006, Holt-Oram Syndrome dx'd 1975, reduced lung capacity dx'd 2009, nasal allergies, food allergies, depression (lifetime problem) IBS, neuropathy in hips

I have 4 children & 7 grandchildren.

As apples of gold in silver carvings is a word spoken at the right time for it. Prov. 25:11

johnnyboy07
New Member


Date Joined Sep 2013
Total Posts : 19
   Posted 9/7/2013 5:20 PM (GMT -7)   
Great, thanks for the info.

Minnesota
Regular Member


Date Joined Jan 2012
Total Posts : 136
   Posted 9/8/2013 3:18 AM (GMT -7)   
I agree as well.  When I have told people that I have CFS, it always begs more explaining and gets a reaction that lets me know the listener is confused.  When I have said ME, people seem to give it credibility even though they have not heard of it.  I guess a medical term like ME just seems more legitimate from my experiences.  I don't tell many people about my deal, but when I do, I now say ME just to make it easier.

Recoveryme2day
Regular Member


Date Joined Jul 2012
Total Posts : 335
   Posted 9/8/2013 3:48 PM (GMT -7)   
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 admin@healingwell.com you are absolutely free to do so.
Craniotomy/Meningioma 12/02,Bi-P. 04,SMI 06, Glu./Wh./La. Int.,IBS 06, Mig. w/ps.-seiz. 07,Dev.Sep.Sur. 9/07, 2nd Men./Tu. Gam. Kn. Rad.12/08, Rad. Hyst. 09/09, w/Meno, Fibro. 09, Disab. 09, EBV/CFS? 11, Vom., D + C w/Vertigo 12, C-diff, spas. col., Chr. Fat. Mod. 13, Lots of Meds they ch. often + herbal meds + alternative when I can afford it.

memaw12
Regular Member


Date Joined Mar 2013
Total Posts : 89
   Posted 9/9/2013 9:58 PM (GMT -7)   
I thought CFS and ME were the same disease. In the U.S. it's known as CFS and in some other countries it's called M.E.

Is this incorrect? A lot of people seem to use CFS/ME now in their posts.
Chronic Fatigue Syndrome, Fibromyalgia, OA, Hypothyroidism, Diabetes Type 2, IBS, Neuropathy, Ocular Migraines.

johnnyboy07
New Member


Date Joined Sep 2013
Total Posts : 19
   Posted 9/9/2013 11:30 PM (GMT -7)   
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 admin@healingwell.com 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.

Jasonmom
Regular Member


Date Joined Aug 2013
Total Posts : 57
   Posted 9/24/2013 4:01 PM (GMT -7)   
OK, pleading ignorance. What does ME stand for?
Stacey

johnnyboy07
New Member


Date Joined Sep 2013
Total Posts : 19
   Posted 9/26/2013 11:33 PM (GMT -7)   
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.

johnnyboy07
New Member


Date Joined Sep 2013
Total Posts : 19
   Posted 9/26/2013 11:37 PM (GMT -7)   
Jasonmom said...
OK, pleading ignorance. What does ME stand for?


Hello,

It stands for Myalgic Encephalomyelitis. It's a name that is widely gaining traction to replace the name Chronic Fatigue Syndrome or CFS around the world.

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 9/28/2013 9:38 AM (GMT -7)   
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.
Ulcerative colitis diagnosed in 2001; symptoms as early as 1992. Currently in 7th year of remission with Remicade.
Inflammatory osteoarthritis; osteonecrosis from steroids
Grave's disease successfully treated with radioactive iodine and now on Levothyroxine.
Type II diabetes induced by steroids.
Meds: Remicade, Colazal, Levothyroxine, Mobic, Metformin

Moderator, thyroid forum

hep93
Elite Member


Date Joined Jul 2005
Total Posts : 12014
   Posted 9/28/2013 5:58 PM (GMT -7)   
A name change for the forum would be Administrator Peter White's call:
admin@healingwell.com.

I tried to get the Hepatitis Forum changed to Liver Disease, but he apparently is happy with the way things are.

Good luck!

Hugs,
Connie
hep93
Forum moderator - Hepatitis


"But that was yesterday, and I was a different person then."

Lewis Carroll, Alice in Wonderland

Liver transplant recipient, Oct. 27, 2011, at Mayo Hospital, Jacksonville, FL

johnnyboy07
New Member


Date Joined Sep 2013
Total Posts : 19
   Posted 9/30/2013 12:33 PM (GMT -7)   
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.

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 9/30/2013 3:28 PM (GMT -7)   
I'm sure as more and more causes are identified, they'll begin to be called by their individual names. For now, it would be both clear and accurate to say you have ME which causes you to have chronic fatigue. People know what chronic fatigue is, so this gives them a reference.

At this point, renaming this forum would be more exclusionary, and I think Peter's view is to be as inclusive as possible. All of us who have chronic conditions are in need of support at one time or another.
Ulcerative colitis diagnosed in 2001; symptoms as early as 1992. Currently in 7th year of remission with Remicade.
Inflammatory osteoarthritis; osteonecrosis from steroids
Grave's disease successfully treated with radioactive iodine and now on Levothyroxine.
Type II diabetes induced by steroids.
Meds: Remicade, Colazal, Levothyroxine, Mobic, Metformin

Moderator, thyroid forum

johnnyboy07
New Member


Date Joined Sep 2013
Total Posts : 19
   Posted 9/30/2013 8:19 PM (GMT -7)   
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.

jujub
Forum Moderator


Date Joined Mar 2003
Total Posts : 10405
   Posted 10/1/2013 1:37 AM (GMT -7)   
Good luck, and I do know what you mean by having a condition that makes people look at you like you're less than they are. Hope this improves for all of us.
Ulcerative colitis diagnosed in 2001; symptoms as early as 1992. Currently in 7th year of remission with Remicade.
Inflammatory osteoarthritis; osteonecrosis from steroids
Grave's disease successfully treated with radioactive iodine and now on Levothyroxine.
Type II diabetes induced by steroids.
Meds: Remicade, Colazal, Levothyroxine, Mobic, Metformin

Moderator, thyroid forum

Tylersdad
Regular Member


Date Joined Oct 2013
Total Posts : 24
   Posted 10/19/2013 7:29 PM (GMT -7)   
I think I may have this condition!
Cfs
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