It’s Only a Name
November 3, 2007 by laura
Filed under Diseases & Conditions
I am so tired of hearing about the controversy surrounding the name of the illness “Chronic Fatigue Syndrome”. If you would rather name the illness that you suffer from, Fibromyalgia or Myalgic Encephalomyelitis because it sounds more like a “real” illness, then do so.
It should make no difference what its called. So what if the name Chronic Fatigue Syndrome doesn’t do your illness justice. You know what it feels like to have it. Your support system knows what its all about. Who cares what the world thinks.
We should be working on getting better, and having a better quality of life (which by the way is totally possible), and stop wasting our energies trying to change the name. It doesn’t matter what its called. It’s still going to be the same illness.
I have wasted enough energy thinking about this issue, and am now moving on to some other topic…..stay tuned.
Picture Source – flickr
I agree. For awhile, I tried to use CFIDS and that was just a mouthful and confusing. So I use CFS. I don’t care what it’s called as long as I get proper medical care and people are understanding.
Angel, I am glad that you agree. I was thinking that everyone was going to be mad at me for putting those thoughts out there.
Sometimes, I should learn to keep my thoughts to myself. But then whats the point of having a blog, if you can’t piss some people off now and then.
Hi! i am the founder of the “change the goddamn name” movement, 19 years ago. this name has caused nothing but misery for some very sick people for almost two decades. 6.3 billion people get “fatigued” every day. most people with ME-itis that i know can barely roll over in bed.
big insurance companies are unable to pay fair disability insurance payments and the average government bureaucrat at NIH and CDC are not smart enough to write their own names without help. this name has stopped good research. it has confused and conflated patient populations. it has led to us all being labeled “pyschosomatic”. the CDC even admits that their own internal estimates are that 75 MILLION americans suffer from “unexplained prlonged fatigue” of 30 days or longer.
i was once on CNN’s Larry King live and he asked me “what does it feel like to have CFS?” i said, “Larry, it feels like a Rodney King style beating, all day, every day of my life!”
and his 20 button phone lit up like a Christmas Tree. he got calls from all over the world. not ONE person disagreed with my description. if you don’t really HATE the awful term “CFS”, then you probably don’t have ME-itis. i have read more than 30,000 letters from all over the world. and they are heartbreaking. disrespect from family and friends, mistreatment by ignorant doctors. dishonest and even criminal treatment by insurance companies. virtually NO research from our government. and often slow, painful deaths. many are misdiagnosed, but those who really have this brutal disease, almost universally detest the vapid name “chronic fatigue syndrome”.
have a nice day!
TMH
I thought this comment might stir up some controversy!
Tom,
Thank you for stopping by and sharing your thoughts. I have some thoughts of my own that I would like to share.
I think its odd that someone would fight for a name change for 19 years with that much passion (there are other names out there, pick one that sounds more like a sickness if CFS doesn’t sit well).
If one redirects that passion into another area- one could actually recover.
I am serious about this. Being bitter about the illness you live with, is not going to make you better…and its certainly not going to make you any friends.
If the people who live with CFS, feel up to lobbying, perhaps our efforts are better suited to going after better funding for research; and not using whatever energy they have towards finding name that makes their illness “sound more” legitimate.
Cripes tom, for someone who’s biggest beef seems to be related to intolerance in a large way, I find your own level of intolerance for others to be quite ironic… Also I’m surprised that someone with your background would presume to “diagnose” another sufferer of CFS. This sounds like a classic case of hating in others that which we most hate about ourselves… (or something like that)
The name was always Myalgic Encephalomyelitis. Still is around the world. In the late ’80s it was changed in the U.S. to CFS. I think what people are asking for is that the original name be recognized.
If you can recover from CFS by redirecting your passion, then you obviously don’t have M.E.
It doesn’t sound like Tom is bitter about having the disease, he is bitter that the US medical establishment has labeled him as chronically fatigued. For sufferers of REAL M.E., fatigue is the least of their problems. Have any of you had a Dr. feign a yawn in your face and say “I must have a touch of that myself” when explaining your CFS diagnosis?
Don’t worry, Tom. As bitter as your are about THE NAME, I would like to be your friend.
I think my original point has been misunderstood.
I am not going on the attack here. I never was. Not so sure, why everyone is so defensive.
The fact that I live a fairly normal life, despite living with Chronic Fatigue Syndrome, is not the issue. Or is it?
I completely agree with Laura on this point. The action focussed to change the name should be used in a more possitive way. If the name was changed does anyone actually think the funding would increase? I really dont think so. Your reply was quite long and well thought out. I would think if you had thought out the name of your movement for as much time (to not use profanity in it) you may have been taken a little more seriously.
Yeah, I think at some level the name adds to the misperception of the condition, but I honnestly think if it was changed people would just say “oh, is that the condition that used to be called chronic fatigue syndrome?”, or else give blank looks and need to have that given as an explanation of the condition. Which would achieve nothing.
I think the focus should be on emphasising the range of severities at which people experience CFS, and the range of symptoms, and how serious it can be, so it doesn’t continue to be swept under the rug by people “fatigued” from leading an overly busy life.
That, and on more research! I’m so sick of living with a condition which has so little solid scientific knowledge around it and may as well be treated by bleeding with leeches for all the effectiveness of the “best” current treatments.
I’m also sick of living with a condition which has a community of support groups wasting all their (precious and seriously limited) energy tearing each other apart about which name has the most authenticity and who does and who does not have “real” CFS. Fuck, get over yourselves! (can I swear on here?)
I wasn’t going to comment, precisely because I’ve never encountered a problem with having the label “CFS sufferer”, except with myself. In Canada, it’s officially labelled “ME/CFS”, and each doctor I’ve been to since my diagnosis has called it Chronic Fatigue, accepted it, accepted how my body manifests it, is open to whatever I want to do about it, but is horribly sorry about not having anything constructive to do. My friends and family have initially expressed how sorry they were that I’m ill, will accept my declining events or backing out at the last minute, and will forget every time what I am capable or not cabable of – just like in every other chronic illness.
There are people out there who are ignorant. There are people out there who don’t understand the danger of allergies, diabetes, MS, etc. I’ve had far worse problems with people’s responses to allergies (thank goodness I’m not anaphalactic – yet!). Yeah, yeah, allergic – this doesn’t have *much* soy in it… Even had health care practitioners not really pay close attention. The upshot is that no one understands any one else, so we have to be clear on our needs every single time, even if we are frustrated or boring ourselves to death with it.
I sympathize very much with the people who contracted this illness in the last couple of decades when the media and the medical establishment were actively against this being a real illness. I sympathize with anyone dealing with a physician who has not caught up with the times (find another doctor!). I sympathize with anyone who’s loved ones can’t get out of their own head long enough to realize you are ill. But like Ellie says, changing the name isn’t going to change any of that. I have used Myalgic Encephelomyelitis occasionally in first contact situations with strangers, but mostly I find people can grasp onto “Chronic Fatigue Syndrome” immediately whereas ME I then have to start explaning things to people who won’t care anyway.
But, like I said, I’m not sure I have a “valid” point of view here, as I’ve not really had to fight for legitamacy even with the CFS name.
The reason energy has been “wasted” on the name change is that a strong case has been made for the necessity of a name change but action has never been taken. Now, 20 years after the name-change movement began, we’re still using an inaccurate, foolish, trivializing name for a serious syndrome. Yes, the silly name *has* hurt our cause over the years. Polio was not taken seriously until people stopped calling it “hysterical paralysis.” Perhaps books should not be judged by their covers – or more aptly, their titles – but they are.
Laura,
As soon as I saw that you were WORKING, I wasn’t sure that we have the same kind of CFS. I’m glad you have this site and I know you can’t please everyone. I was able to work about 10 years ago and now with no work, on SSD (thank god) and very little money, I feel that I am in a different place than you are.
Did you ever have CFS so debilitating that you couldn’t work for years?? Hey, I think hints and tips are very good and I thank you for that.
Just wanted to add my 2 cents re the difference between those who can work with CFS and those who who have tried and had to stop.
Thoughts? Thanks,
d.
Denise,
Yes, at one time I had a very debilitating form of CFS. For two years, I was not able to work, and could not look after myself.
Medication did NOT help me. My doctors and I tried a lot of different meds- but they made my symptoms worse.
What made the difference was that I was able to find a job, where the employer accepted the fact that I was not well – and was able to find a schedule that worked around how I was feeling.
From that, I discovered that work actually helped my symptoms. After a while, I found alternative therapies – and they have been quite successful in helping me live a quality life.
You will discover by reading this blog, that MY CFS is different now. I no longer have the day to day problems that come with having CFS. Well I do get some of them everyday, but they are manageable. What I do have is a completely wrecked immune system – and that is a direct cause from Chronic Fatigue Syndrome.
My doctors have suggested that I try other forms of dealing with this – such as going on disability. This will not work for me. The minute that I stop fighting (my way) – will be the beginning of the end, for me.
And so the battle ensues…..
I will win this. It is possible.
I won’t contradict doctors’ advice here, I am not a doctor – nor do I pretend to be one. But if one opens up their minds to include other forms of healing (not just pills) – one might find a way- to get past the disability.
Or not. Maybe I was just lucky.
Thanks for the comment.