CFS Panel Wants Name Change for Disorder

[garcia]

Regarding the name: methinks it would be a pity if they used - CFSME rather than MECFS. It would be a retrograde step if the opportunity really existed to change it!

CFS-ME is what the psych-lobby call it in the UK. We want to avoid that name at all costs.

ME/CFS would at least be a step-forwards (ideally the CFS would get dropped completely).

 

[jace]

This is my precis of motion 3 from the ME/CFSAC October meeting:

Motion 3

Leonard Jason verbally recommended an extra motion, that the committee approves the term ME/CFS to replace the term CFS including in the name for this committee. This last minute motion was discussed and decided on the name ME/CFS, with no specific decision regarding Myalgic Encephalopathy vs Encephalomyelitis.

The motion was passed unanimously.

 

[garcia]

I'm glad of the name change, but I have a question:

Why wasn't this done years ago????

As I've been saying for many moons now: "Only a name change will bring a game change"

 

[Berthe]

It's a shame that in the Netherlands they also think that M.E. is 'in the head'. They use the name M.E. for CFS and it has a bad connotation already. Although I hope that ME/CFS (in dutch ME/CVS) will change the way people perceive the disease, I'm sure we need more than only a change of the name to get rid of the stigma that comes allong with the name of the disease. I can imagine that in other places in the world, people are excited about the name. But the name is the form and not the content. If one day xmrv would be the proven the cause of CFS, the content of the disease would change and CFS would be looked at differently. As long people think it's psychological instead of biological you can name it whatever you want. I don't want to be a party pooper.

Love,
Berthe

http://www.onwilliglichaam.blogspot.com

 

[urbantravels]

I think the history of what name has been associated with what attitudes probably will differ a lot. Certainly the past history of calling it M.E. in the UK hasn't done much to prevent the belittling and denial of the disease.

Thanks to Prohealth for writing a nice, concise, accurate summing-up of the points from the CFSAC meeting - we needed one.

 

[lansbergen]

It's a shame that in the Netherlands they also think that M.E. is 'in the head'. They use the name M.E. for CFS and it has a bad connotation already.

Who does? Nijmegen claims patients call CVS wrongheaded ME.

According to Nijmegen CFS equals CF an ME does not exists.

Can you give me a link to a paper from dutch researchers about ME?

 

[Berthe]

I'm not talking about researchers using the name M.E., but about the bad connotation it has. I guess you know the most well-known boek is Heden ik van Renate Dorrenstein about her life with M.E. The great public uses the name M.E. and as you mention the patints do. I'm just referring to the common interpretation of the word. More disturbing is the fact that scientists don't seem to aknowledge that M.E. exists. I wasn't aware of that.

Love,
Berthe

http://www.onwilliglichaam.blogspot.com

 

[lansbergen]

I'm not talking about researchers using the name M.E., but about the bad connotation it has. I guess you know the most well-known boek is Heden ik van Renate Dorrenstein about her life with M.E. The great public uses the name M.E. and as you mention the patints do. I'm just referring to the common interpretation of the word. More disturbing is the fact that scientists don't seem to aknowledge that M.E. exists. I wasn't aware of that. Love, Berthe

Renates book had much publicity but that does not mean I have to be happy with it.

 

[rescindinc]

It's a shame that in the Netherlands they also think that M.E. is 'in the head'. They use the name M.E. for CFS and it has a bad connotation already. Although I hope that ME/CFS (in dutch ME/CVS) will change the way people perceive the disease, I'm sure we need more than only a change of the name to get rid of the stigma that comes allong with the name of the disease. I can imagine that in other places in the world, people are excited about the name. But the name is the form and not the content. If one day xmrv would be the proven the cause of CFS, the content of the disease would change and CFS would be looked at differently. As long people think it's psychological instead of biological you can name it whatever you want. I don't want to be a party pooper.

Love,
Berthe

http://www.onwilliglichaam.blogspot.com

I agree with Berthe completely! M.E. has been poisoned by it's association with the term CFS. You can find some history of the "NAME CHANGE MOVEMENT" at our site at www.rescindinc.org., you can also find some back up in an interview that Cort did with me in 2008 about the various ME/CFS, CFS/ME and CFIDS and Plain CFS and plain M.E. people are waiting for the isolation of a single agent LIke XMRV to change the name.
Sad to say, i am of the belief that "different insults, same result" will be the eventual cause of these CIND or NEID conditions. And adding to the Party pooper term that Berthe mentioned, this illness IS in our heads!
of course it is. It is in our BRAINS and our brains are located in our heads. and OUR brains have more neurons firing and crazy synapses snapping than the average person has. our gears of our HPA axis has been stripped by a group of viruses or bacteria, or prions, or chemical insults, or physical blows to the head, or some combination of all of the above! some of us have been saying this for more than 2 decades! at www.RESCINDINC.org we have more than 8800 names demanding that actual W.H.O. NEUROLOGICAL code of 93.3 for Myalgic Encephalomyelitis already exists! and even if you are diagnosed with the bullshit term of "CFS" that doesn't mean you can win social security disability, or private sector disability. LTD companies only care about two things. #1. can you perform your same job as before you got sick. #2. can you perform ANY job in the US economy. PERIOD! that don't care what you call yourself or what you can get your doctor to say you have! But, the next time sometime tells you that your illness is "all in your head". Say "of course it is. It is in my brain!. which is probably bigger than YOURS! and maybe the gods decided that their needed to be a fairer fight between inferior intellects like yours! So, the gods gave me M.E.!" (Thanks Berthe) xoxo TMH

 

[Hope123]

The main issue I see with the name change is that although it might be a good PR move on NIH's part, I'm not sure how much of a real impact it will have on scientists or medical staff as 1) it is not specific enough (they haven't clarified if it is -encephalopathy or -encephalitis) 2) not sure if it really gets at the etiology or presentation of the disease (myalgia is a part of the disease but not the most prominent/ disabling symptom for many).

 

[Dolphin]

Why wasn't this done years ago????

As I've been saying for many moons now: "Only a name change will bring a game change"

Some people didn't get behind some other attempts at the name change. I think these were examples of the "best" being the enemy of the good i.e. some people thought they had better suggestions, voiced complaints and we got nothing. I hope it doesn't happen again.

M.E. is also used in lots of countries around the world. I think would be good to unite. Then maybe kick out the CFS after a while e.g. M.E./<new name> (or move on to something else completely). ME/CFS is starting to be used in medical journals (Lenny Jason uses it in a lot of his articles).

 

[Berthe]

Thanks Thomas, for understanding and even more. I read you website. I had no idea that so many people were already trying to change the name in something more appropriate. I do agree with you that marketingwise the name of this disease is runed already. Hillary Johnson describes it very well in Osler's web. The CDC did created a brandname for a disease that virtually didn't exist in their eyes. I hope they don't want to fob the patints off with a change of the name, instead with a change of the content of the disease. Content that is related to the right criteria and doctors of a different nature. No psychologists, but endocrinologists, immunologists, cardiologists etc... If we settle for less, it would be a waste of energy, instead of precious energy well spend.

Love,
Berthe

http://www.onwilliglichaam.blogspot.com

 

[Berthe]

Lansbergen,

I don't get your problem. In everything I write you seem to read the opposite. Or at least something I didn't write. If there is a problem with interpretation I can also write you in Dutch.

Love,
Berthe

http://www.onwilliglichaam.blogspot.com

 

[lansbergen]

Lansbergen,I don't get your problem. In everything I write you seem to read the opposite. Or at least something I didn't write. If there is a problem with interpretation I can also write you in Dutch. Love, Berthe

I do not have a problem. I have different opions. That is not new. I have expressed it for years on the oldest dutch list.

 

[Berthe]

That's weird. I thought we had the same objections against CBT (GET in disguise). What the heck is the oldest dutch list? Well I did some research and I guess I found out that you are in favor of the name M.E.. I just wanted to let you know that I'm certainly not against it if it would mean real progress. I only doubt if the bad connotation will disappear. I'm also in favor for M.E. if it means that scientists and physicians look at the disease differently. So we are actually on the same side.

Love,
Berthe

http://www.onwilliglichaam.blogspot.com

 

[apples]

Could be good if the new name gets more research attention, but it could go the other direction: attention CFS/ME has garnered so far could dwindle with a name change. Of course, it could make no difference, in which case, it seems a shameful waste of time and effort.

 

[Dolphin]

Could be good if the new name gets more research attention, but it could go the other direction: attention CFS/ME has garnered so far could dwindle with a name change.

If ME/CFS is used, the change isn't so different so I'm not sure that much attention would be lost.

Of course, it could make no difference, in which case, it seems a shameful waste of time and effort.

I don't think changing to ME/CFS will involve such an amount of time and effort that it would be shameful. Hopefully it would be a transition: get people used to ME/CFS and then either go to ME or go to ME/<new name> and eventually <new name>. I don't want Chronic Fatigue Syndrome in perpetuity. What has held back ME in the past is its lack of use particularly in the US.