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'Chronic Fatigue Syndrome' Challenged

  [ 759 votes ]   [ 18 Comments ]
By Rich Carson • www.ProHealth.com • August 14, 2007


A grass roots effort to change the name 'chronic fatigue syndrome' is gaining momentum, giving patients the opportunity to vote on a new name.

Just about everybody knows that the name ‘chronic fatigue syndrome’ trivializes the seriousness of the disease. It is a bad name that has lasted too long and robbed us of our dignity, inch by inch, one day at a time. The name makes light of our suffering and is hurtful to patients everywhere.

One of our readers who has a way with words said that calling the disease chronic fatigue syndrome is like calling Parkinson’s disease “chronic shakiness syndrome.” I could not have said it better.

An effort to change the name was launched in August 2006 with the introduction of Campaign for a Fair Name - the effort to replace chronic fatigue syndrome in the United States with a name that is respectable. The centerpost of the campaign was the January 2007 summit meeting of the Name Change Advisory Board - eight of the most published, quoted, and highly regarded CFS experts in the world. Collectively they have amassed over 150 years of CFS research and clinical experience.

The Advisory Board felt strongly that the name was inappropriate, and that a change was imperative. Their consensus recommendation was that the name be changed to ME-CFS, short for Myalgic Encephalopathy-Chronic Fatigue Syndrome.

It should be noted that ME-CFS represents a convenient catchphrase, describing both ‘Myalgic Encephalopathy’ and ‘Myalgic Encephalomyelitis’ - the name that CFS has been called in most of the world for close to 50 years. Either way, many believe ME-CFS is a win for everybody, and the reasoning seems sound to me. In line with the Name Change Advisory Board, the International Association for Chronic Fatigue Syndrome - or IACFS - voted to change their name to the IACFS/ME. This is the largest organization of CFS researchers and clinicians in the world.

The next step is to learn the opinion of the most important experts - the patients, whose voices have yet to be heard. As a group, and with the backing of the Name Change Advisory Board and the IACFS/ME, we now find ourselves with the perfect opportunity to change the name.

A voting survey will be introduced within the next several weeks that will finally give patients the chance to choose the new name. This opinion poll will soon be available on ProHealth’s website, and on the websites of many other U.S.-based CFS and FM organizations.

This is our chance to be heard. We did not have this opportunity when the disease was named 19 years ago. But we do now. I encourage you to make your opinion known by voting in the upcoming name change opinion poll and to encourage other patients to do the same. You owe it to yourself, and you owe it to patients everywhere.

Sincerely,

Rich Carson
CFS patient




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Article Comments Post a Comment

"the name"
Posted by: loispix
Aug 15, 2007
M.E. is fine but drop the "f" word all together. It adds nothing (but problems and misunderstanding and trivializing the disease). Loispix
Reply Reply

 
the name
Posted by: grammcrkrs
Aug 15, 2007
I LOVE M.E....but once you start to say "ENCEPHA"..people don't listen any further! ..WhenI tried that out on my new doctor a few months ago he about croaked thinking I was telling him I had some sort of swelling of the brain! I was perplexed and so said, "no no no...not THAT...it's CFS" and he looked at me like I was nuts for maybe trying to have him think who knows what...

And if you take out fatigue in CFS....you can't say you have Chronic Syndrome...well, if M.E.-CFS flies (and I will vote for it)...I hope our doctors are educated quickly. Thanks for all your efforts...so much appreciated!

Grammcrkrs

 


CFS
Posted by: tulsabrit
Aug 15, 2007
If you have CFS/TH1 Immune Disease, check out www.marshallprotocol.com. The protocol has awarded many people with TH1 issues the chance to have a normal life and not just be in remission.
Reply Reply

cfs
Posted by: mandyau
Aug 15, 2007
Is the name going to be changed in australia?
Reply Reply

Name Change
Posted by: TALLMOM
Aug 15, 2007
I was so excited when I first read about the name change. I really thought our wait was over. But months have gone by with no action taken. Tell me what we can do, and count on me to spread the word. We need this change!
Reply Reply

Name Change
Posted by: Gwennie
Aug 16, 2007
I fail to see what is wrong with the name "Chronic Fatigue Syndrome". It is simple, accurate and yes, there has been a a struggle to have the illness recognized by the medical community as well as the public. But the majority of the people do know and are aware of the illness to varying degrees by now. I think the name change will do nothing but cause confusion, particularly with the public. Forgive the expression but the K.I.S.S. principle is key in most advertising ... "keep it simple stupid". I want our struggles to be acknowledged, respected and action taken just as you do. I just don't think a name change is going to be the key to these things.
Reply Reply

ME-CFS Name
Posted by: teejkay
Aug 16, 2007
I would rather it be called Myalgic Encephalopathy without the CFS. Please get rid of the name CFS!! tee
Reply Reply

ME-CFS Name Change
Posted by: veganbikerbabe
Aug 16, 2007
I don't know how many times the advisors need to be told just how offensive the "F" word is. "CFS" needs to be eliminiated completely, and until it is, main stream physcians will never take this illness seriously. I can't believe any advocate would think keeping CFS as a part of the description would be acceptable. Fatigue is not at all accurate. When has anyone been so "fatigued" they didn't have the strength to write their own name? The closest thing, as we all know, to what a "healthy" person experiences that's anything like this illness is the flu, and I can assure you, if they call in sick to work, they don't say it's because they are "fatigued." Of course they don't. Their boss would laugh them right out of job. The say they have the flu. Geez, do they want to change the name of HIV/AIDS to Gay Related Fatigue? It makes about as much sense as "CFS."
Reply Reply

Name Change
Posted by: KerryMyGirl
Aug 16, 2007
I have what they have named FM/CFIDS/Lyme/MPS+++ After 15 yrs. yrs. to get some whistleblower info, get CDC finally put the money we are given to us. Had mis-spent our monies for yrs. I feel all are wrong names looking at this being let out for bio terrorism(YRS). ago. Think when all these immune illness flourished. About 15-20yrs To get where we want to go we need to ban together. Parkinson's/found mild form RLS/many suffer. People with our illnesses MS/CFIDS/FM/ALS/Bi-polar-/RA+++. All these immune illnesses with same symptoms just take another branch of tree. We need to ban together. By now we all probably care the mycoplasma, look at as root of tree. Then branches off where can sneak into many times after stress when immune system breaks. We know 90% show EBV.Hmmm?? I hope we can all ban together & fight the fight to help all. All these names are lousy. None tell thing about how terribly serious, chronic illness, lousy way to end life. This has become stealth in clinic came in younger & younger. Please help us all, as Cancer/100 diff. types/or arthritis All diff names, Lymphomas, Hodkins,blastoma,etc. Arthritis/osteo/all type joint arth/100+ from common to rare. They all ban together. As long as we as docs can`t think out the box, will take much muuuuuccch longer to get heard & help.As it has. Stats on this. Which stem cell for us just maybe something to save lives, especially people who have less time inflicted.. Kerry/Huggsss, to all in Need
Reply Reply

Not M.E. and especially not CFS!
Posted by: anniedan
Aug 17, 2007
I thought we were going to have a campain for a fair name? I tough we were going to try to change the name of our illness? I think we have said long and often enough we were tired of the term "fatigue" in our illness' name and that it was trivializing! How can the people involved in this campain be so proud of what they accomplished and try to convince us to vote for their "new" idea (come on, it's all too obvious, when asking us to vote and telling us how wonderful their idea is in the same sentence!), when all they came up with is... hummm... nothing new?! It's still CFS! Only now it's stuck with M.E. Another name the medical and scientific community never really liked/trusted/believed/had faith in, another name that never did us any good, another name sufferers didn't like very much (I remember many saying it was referred to the "me" syndrome, and used by some mean people in jokes of sufferers being needy!). The research is going in the way of immune, cardio-vascular and neurological dysfunction more and more... not in any inflammation of any part of the brain (the neurological dysfunction is not what it's about!), and the muscle pain is not something that's common to all sufferers... I would very much prefer a name that's not already been used with such a lack of success, that had such a bad reception already in the medical society. A name that truly represents what our illness is about. That sticks to the reality of what the research is finding all over the world today. That sticks to my reality as well as to that of all sufferers. We wanted to get rid of CFS and the term "fatigue" once and for all. We wanted something better than M.E. Vaguely changing the meaning of the "E." in M.E. won't do it for me. Why work hard to campain to change the name of our illness if it's for nothing? I want a real name CHANGE, I want a real FAIR name.
Reply Reply

 
Reply
Posted by: elsa
Aug 18, 2007
The "CFS" added to "ME" is, as I understand it, temporary and for the benefit of patients receiving disability, insurance payments, etc..

Our world is made up of codes - to suddenly drop "CFS" would leave a coding void that would seriously and negatively effect those who fought very hard for benefits and the like.

As the new name takes root and gets phased into medical and insurance coding, etc., the "CFS" will be phased out. It will take time.

As for the new name - I like it. We have a neuro-endocrine illness, plus assorted other effected body systems. The ICD-9 and soon ICD-10 have CFS listed as "Neurological" and have since the 60's (I believe). To me, the US is just finally catching up to the World Health Organization -

It's about time - Elsa

 


A perfect name is not possible, a respectable name is ESSENTIAL
Posted by: passionate
Aug 21, 2007
Below is a comment from this board by 'Elsa' (8-18-07) that I thought should be front and center. I also liked an article written by Karen Richards called 'A Perfect Name is not Possible, but a Respectable Name is Essential" (http://www.immunesupport.com/library/showarticle.cfm/ID/7774/t/CFIDS_FM), Both reflect on the need for a change, while acknowledging that is not possible to find a name that will please everyone but that it is indeed imperative that the name be changed. Here is a question that I would be interested in seeing patients answer: If given the choice of choosing 'ME-CFS' or keeping the name 'chronic fatigue syndrome', which would you choose? It may actually come down to that. Here is Elsa's comment: The "CFS" added to "ME" is, as I understand it, temporary and for the benefit of patients receiving disability, insurance payments, etc.. Our world is made up of codes - to suddenly drop "CFS" would leave a coding void that would seriously and negatively affect those who fought very hard for benefits and the like. As the new name takes root and gets phased into medical and insurance coding, etc., the "CFS" will be phased out. It will take time. As for the new name - I like it. We have a neuro-endocrine illness, plus assorted other effected body systems. The ICD-9 and soon ICD-10 have CFS listed as "Neurological" and have since the 60's (I believe). To me, the US is just finally catching up to the World Health Organization - It's about time - Elsa
Reply Reply

RE: Posted by: Gwennie Aug 16, 2007
Posted by: veganbikerbabe
Aug 24, 2007
Regarding the comment Posted by: Gwennie Aug 16, 2007 "I fail to see what is wrong with the name "Chronic Fatigue Syndrome". It is simple, accurate..." and then adds "... the majority of the people do know and are aware of the illness to varying degrees by now." Wow, where do I begin? I'm just going to try to keep my remarks simple here, as my gut reaction is extreme anger to this comment...so I'll start my comments with a question... What would possess a person with this illness to post such a false comment with such potentially, severe negative consequences? So I'll address each comment: The problem is the name is not at all "accurate." If fatigue were truly the issue, we could all just stop whatever it is we are doing (fatigue is something you feel after exersion) go to bed to either rest or sleep, and then bounce right out of bed. How on earth does the word "fatigue" tell anyone that when you go to sleep, you can't sleep because you have chronic insomnia, and then when you fall asleep your body starts throwing off heat so much that your spouse/partner can't sleep in the same bed with you, and then you wake up several times shivering becuase you're drenched in sweat? So you take your body temp, certain that it's gotta be 102 with the way you feel, only to find it's at least 1 degree BELOW normal. How does the word "fatigue" explain a lack of strength so extreme that you can't even write your own name? Or that you have to take a break half way for your 15 ft. treck from the sofa to the kitchen because you start seeing stars flying backward and you know if you don't sit down on the floor right now, you might pass out? How does the word "fatigue" explain your hearing and vision disorders? How does the word "fatigue" explain why the glands in your throat are so swollen, you look like you have a case of the mumps? How does the word "fatigue" explain a type of headache you've never felt before? How does the word "fatigue" explain the chronic cough you have and the "crimson cresents" in the back of your throat because your body doesn't know when enough is enough with the histamine release, and that there's no drug that can stop it, only drugs that can make it semi-bearable? How does "fatigue" explain why you have serial cases of fungus on your skin, in your throat, and in other body orafices? OMG, if I haven't made my point about just how ridiculous the "f" word is, by all means let me know. The "F" word belittles the severity of this illness. I'll get a CFIDS book and list all the symptoms OTHER than fatigue. Like I said above, even "fatigue" is poorly inadequate in describing extreme lack of muscle strength. The terminology is incorrect, but giving everyone who likes that word the benefit of the doubt, it is just ONE of the very many symptoms, which in fact are more severe (e.g. POTS/NMH). Then to top it all off, there's the comment "the majority of the people do know and are aware of the illness to varying degrees by now." Where do you live? If people know about it where you are, and treat you with dignity and respect, then everyone with this illness is gonna pack up and move to your town. I can assure you, things are not so good for the rest of us. The rest of us live in towns where the closest Dr. you can find who will take this seriously is a 6 hour drive away. Since I've been diagnosed, I've lived in 3 different cities, all with support groups. Only 1 of those cities had a physician that thought CFIDS was a legitimate illness. That physician has since retired. I know the rest of you reading this all know what I'm talking about! I know the majority of us have our "Physicians Horror Stories" LOL, my 1st one was from a Dr. who said the NS and Hot Flashes were from living in FL. I kid you not! I would PAY to see him tell that to a lady with out of control emotions, going through menopause... she'd deck him or just go all out nuts on the guy. Of course if I would have gone nust on him, this would have proven it was "all in my head" and yes, that did happen to me.. another doctor looked me straight in the face and said it was all in my head, that I had depression, which yes got my emotions riled up, furthering her proof... she said "See, look how upset you are!" Oh boy, what I was feeling was definitely not depression, and if she can't tell the difference between a person with depression and someone who is so angry they want to tear her head off, well... she's the one with the mental problem. Again, my point is that most of us can't even find a doctor who takes this seriously, much less the people in the general population... because all they know about "CFS" is that's what over-acheivers have because they work like crazy people or those are the people who pretend they're sick because they don't like to work. This is not at all meant to be an attack on Gweenie. We should all be as lucky as her to live in a place where people have heard of the illness and we can come out of the closet and be treated with dignity and respect. We should all be as lucky as her to just feel "fatigue," but neither of those scenarios holds true for many of us who still fight like hell to be well enough so we have the privelige (that others take for granted) to get out of bed and go to work to do the work that others would love to get out of. Many of us are still searching for doctors that don't look at us and treat us like we're crazy. I'm very fortunate. My health has been really good the past few months, I have an employer who is sypmathetic to my plight, and I'm a patient of Dr. Klimas, so although it's a 6 hour drive of the cost of flight to see her, I DO have a doctor that takes me seriously. However, I don't take that for granted. I'm one of the lucky ones... and I know darned well what the consequences are of having an illness with such a ridiculous and demeaning name as "CFS" which still translates today to either "hypochondriac" or "lazy" for the rest of us that live in the real world and not land of lollipops and rainbows. As for the comment about the mild change in the "E" part of ME. I have to disagree there as well. Encephalopathy: encephalo = brain, pathy = disease and more and more research is indicating that CFIDS is indeed a disease/disorder that starts in the brain, or at the very least that the brain is the part of the body that "reacts" to whatever instigates the disorder. This is VERY different from Encephalomyelitis which = swollen brain. So although the name change sounds mild, it's a rather substantial change. I'm not saying that it's a good change, I'm just saying that it's a much more accurate change and certainly the general popluation is going to respond better (meaning not stereotype you as a hypochondraic lazy)if you tell them you have Myalgic Encephalopothy vs. CFS.
Reply Reply

Name Change
Posted by: grannycfs
Aug 26, 2007
I understand much of the board's decision but since there is so much controvery over myalgic encephalopathy vs. encephalomyelitis, why wasn't it simply stated that ME-CFS "officially" stands for Myalgic Encephalopathy/Encephalomyelitis - Chronic Fatigue Syndrome and keep folks everywhere satisfied. We need to move on to educating the vast majority of healthcare providers who don't have a clue about CFS let alone the 2 forms of M.E. Karen's article was excellent by the way and many have offered wonderful comments. But I'm not sure this particular suggestion of mine has been voiced. Nancy Henson
Reply Reply

Name change
Posted by: bluewing
Sep 5, 2007
For what it's worth, I think ME-CFS is proper. Now, would you please tell me how to pronounce it (Encephalomyelitis, Encephalopathy) in plain syllables? I haven't been able to use those words in a conversation as yet. :) Maybe I could find a word to include FMS, Osteoporosis... ruptured, collapsed, and degenerative discs, and whatever you call those very painful knots that can appear on the body. There's more, but now that I stop and think "FMS" probably includes the whole lot! I've opened another can of worms, but know you understand. And I so appreciate this site and all the hard volunteer work it takes to keep it going. THANK YOU.
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