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Name Change Campaign - The Choice Is Yours!

  [ 636 votes ]   [ 13 Comments ]
By Rich Carson • • September 5, 2007

The name change campaign is alive and well with a move toward the use of ME/CFS, making patient unity and support crucial in moving forward with its implementation.

We are making great progress in changing the name (Chronic Fatigue Syndrome) that has caused us such anguish and humiliation for the past 19 years. After years of suffering its injustices, we are just months away from implementing a new name that will help us gain the recognition and support that we deserve.

To recap, a serious effort to change the name was launched in August 2006 with the introduction of Campaign for a Fair Name. The Name Change Advisory Board, composed of eight of the most highly regarded ME/CFS experts in the world, was formed and met in January 2007 to come up with a recommendation for a new name. The Advisory Board determined ME/CFS (Myalgic Encephalopathy-Chronic Fatigue Syndrome) was the best overall choice for several key reasons:

1. ME/CFS is medically and diagnostically correct.
2. ME/CFS is a scientific sounding name which gives the illness more credibility.
3. ME/CFS is intended to be used as an umbrella term to satisfy as many groups as possible.
4. ME/CFS still includes “CFS” which avoids problems with losing insurance or disability claims.
5. ME/CFS provides freedom and flexibility - some folks like Myalgic Encephalopathy, others prefer Myalgic Encephalomyelitis.

The recommendation has been made, and in the next few months we are moving to the next exciting phase: your vote! There are bound to be conflicting opinions and emotions about the new name, but there is one thing that we can all agree on: The name needs to change! In order for that to happen, we need to get behind the chosen name and make a strong, unified impact. If we don’t do this, if we get preoccupied with picking a “winner,” we are in grave danger of losing the battle altogether and the entire effort could collapse.

Here are some crucial points to consider. ME/CFS gives you the freedom of using “Myalgic Encephalopathy” or “Myalgic Encephalomyelitis.” You get to choose whichever term you prefer because as an umbrella term, ME/CFS stands for both. In fact, in an exciting new development, the UK has issued a clinical guideline for the National Health Service referring to “Chronic fatigue syndrome/Myalgic encephalomyelitis (or encephalopathy)” – implying the two are interchangeable, and that both legitimately describe the same illness…ME. Again, the choice is yours.

Over the next several months, we will be introducing you to our “Dream Team,” the members of the ‘New Name Implementation Committee’ - the NNIC. I am honored to introduce our first four members, Drs. Leonard Jason, PhD, David Bell, MD, and Charles Lapp, MD; and Karen Lee Richards, a leading ME/CFS & FM patient advocate and co-founder of the NFA.

These and other NNIC members - world-renowned ME/CFS experts, prominent patient leaders and activists, CFS-ME publishers, authors, and celebrities - will work together to implement a name that will finally bring dignity to patients starving for respect and recognition.

With hope and conviction,

CFS patient and volunteer

PS. Looking for the best description ever of the name change effort? Then read this week's feature article by Dorothy Wall, author of the much-admired book, Encounters with the Invisible: Unseen Illness, Controversy, and Chronic Fatigue Syndrome.

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Regarding the Name Change
Posted by: Islebabe
Sep 5, 2007
I think it is so important to make this change over from CFS to ME-CFS, and eventually just ME. It is so much more than just CFS even though there is a stigma also attached to the illness. ME-CFS covers the whole gammit (sp?) of the illness including overlapping illness that come with systemic disease. ME sounds like ok, you have deep burning pain all over that hurts and burns to the bone and also like you've gone a sleeping illness, memory problems, thinking things that aren't, "daily wooze-a-thons" or as some people call it "brainfog", saying things outloud that people say you said and you don't remember saying it AT ALL and if EVER!! Saying it outloud and it being something you'd never say!! EVER!! Retraining your brain because it is as if you've had a stroke. You look at the vacume cleaner and wonder how it is that you ever used it and the same with the washing machine, dryer, and stove? How'd I do all of that? Not being able to read or concentrate. No sleep or hypersleep or narcolepsy type symptoms and sometimes people even start with seizures. This name definately indicates there is something going on not only with the immune system, endocrine system but another major system, the brain!! Break outs of things like Sicca and Lichen Planus along with it? I mean CFS alone is important because the Fatigue is unbelievable, but it leaves the brain out and all that it operates or doesn't when sick. This is such a great idea. I can't wait to cast my vote! Best Regards-Mrs. Doe Serena Cochran (aka: Beauty to most, Islebabe here)
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Posted by: shoeless-j
Sep 5, 2007
The WISCONSIN Association is holding our annual meeting and seminar on October, 6, 2007. We revamped our bylaws after 20 years. The voters by proxy or in person will be looking at by laws that reflect common practice which means a simple change from CFS to ME-CFS because populations are mixed at this point and all sit under the umbrella of CFS. This is a small step, but sets the stage for changing our Association name. Within the next year, as editor of our publication, Lifeline, I will post numerous articles about ME so that our members can make an informed decision about changing the association name. Why do this? We have people who have never heard of Myalgic Encephalomyelitis, probably have that illness, and are too sick to keep up with name hoopla politics. We have people who do fairly well, but understand that having a CFS label is like wearing a ball and chain or a sign that says, "kick me." I have no idea when the dust settles if these people will meet ME diagnostic criteria. We have members who want a change, but are waiting for the BOARD to do something. My job is to educate as best I can. WISCONSIN has a core of old timers who are becoming more ill as time goes on. I hope they can get preventative care for cancer and heart disease. These are people I know well, and some of them have died. I know fatigue has not been the major disabling symptom. Name change or not, unless they can get attention, the outcome is the same. The point is, we are working on several fronts. After the annual meeting, we have updated bylaws, and then we will look at state/federal regulations about changing our associatIon NAME. I am pleased that we had the foresight to have our website as Lastly, because I have ME, I am inclined to want this change. INCLINED is a passive word. WISCONSIN has taken a position about this since the early 90's. Our board position remains unchanged. Go back to ME. Now it will be up to our members to decide. Pat FEro
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AME for a CURE!!!
Posted by: dbsek
Sep 5, 2007
I would like to see the name changed to Autoimmune Myalgic Encephalopathy. "AME for a Cure" would be a great catch phrase to say and print on t-shirts, etc... for fundraisers!!! What does everyone think???
Reply Reply

Posted by: pam1201
Sep 7, 2007
i think ame for a cure is a great idea!


Posted by: Holly-Admin
Sep 7, 2007
Reply Reply

Rename ME/CFS to Sisyphus disease or Ezelius disease
Posted by: sysiphos
Sep 10, 2007
RENAME ME/CFS TO SISYPHUS DISEASE OR EZELIUS DISEASE I hope my free thoughts in this subject presented below may help getting some ideas of how to find a suitable name for ME/CFS. The main idea is to avoid using any medical terms in the name, but instead use a surname for the disease as for example in "Ménières disease". Let us be creative when thinking about a new name! I think ME/CFS should be renamed to a name that does not include anything about the patho-physiology. That would be the logical thing to for a disease that has a very complex patho-physiology. The patho-physiology is not known for the moment and we need a name now, and not in 20 years or so when the disease is understood in detail. What name could we expect anyhow when the origin of the diseased is found? Maybe we end up with "high expression of the CGDT-123 gene coupled with mutations on the DGEE-1 and DETA-5 genes". That would not be suitable anyway. The more generic name neuro-endocrine dysfunction, I think is too general to be used for ME/CFS. I am convinced that in the future a lot of diseases will be discovered to pertain to the neuro-endocrine system. We actually already have a few. Instead, my suggestion is to rename ME/CFS to "Sisyphus disease". Sisyphus was a king in Greek mythology that outwit/duped death. As punishment he had to work in underworld to repeatedly for eternity roll up a rock uphill a mountain, from where it fell down again. From there, a "Sisyphus work" is a work that last for ever and never yields no result. This is exactly what it is like to live with ME/CFS. The inability to finish things. You do a bit but get tired and have to stop and then you have to start all over again. You get nowhere and can not go an and pursue your life. It might be that Sisyphus disease might not be "serious enough" because it might people laugh when saying that "I have got Sisyphus disease" and think that you are telling a yoke. If that is the case, then I think that it can be named with any surname. For instance call it "Ezelius disease". /Kasper Ezelius, Örebro, Sweden ( ) Background and more thoughts about the name change that I propose: More about Sisyphus:
Reply Reply

Please no "CFS"
Posted by: Yawn2Much
Sep 10, 2007
My only wish for the new name is that it would NOT include the words Chronic Fatigue Syndrome. I've had nothing but bad experiences with it to the point that I'm almost tempted to say "I have something like AIDS." An experience I had not long ago illustrates the point. I saw an aquaintance who asked "How are you?" and I said "Well, I'm fighting a bit of the flu." She said "Last time I saw you, you were sick with the flu." I explained that I have an immune disorder that results in flu-like symptoms, etc. called Chronic Fatigue Syndrome. Immediately she responded, "Sounds like laziness to me." If I weren't stunned by this response, I would have said "I can't believe that for the past 38 years, I've been seeing scores of doctors, spending thousands of dollars on tests and treatments, when I could have come to you and in less than 10 seconds, gotten an accurate diagnosis of laziness, for free." In the beginning, when I explained to a doctor that there are times when the fatigue is so debillitating that I don't think I could save my life if my house caught fire, he simply responded, "Everybody's tired!!!" In other words, "Get over it, wimp." So, I continue to suffer in silence, embarrassed by the name that belittles the impact this illness has had on my entire life.
Reply Reply

When do we vote?
Posted by: guineapigs
Sep 24, 2007
Reply Reply

reponse to C&S
Posted by: HazUK
Oct 31, 2007
Interesting comments... As I said last week - why put things in the way, when you can resolve it and make it easier for people? - if ME evokes a reaction of professionals (the all about me joke) then it is not about campaigning for dignity or proving anything, it is an unnecessary fight..... why fight anything... I think it is about being smart and taking obstacles out of their way because we can identify and resolve that, and so removing this ridiculous fight. I am not interested in letter writing and campaigning for something so simply resolved.. lets find something that works by identifying a smooth and easy path now? By having a name that is clear, agreed by authorities, then it is simply a matter of education though 'official channels' with effective written materials and media agreement. So, CFS and ME evoke problems... if the M stands for pain and E for brain inflammation - there is no reason it has to be M first. (sorry if my understanding of these words area in it's simplest basic level but it is the best I can do) I like the above Neuro Immune Deficiency one ....and I still think if you rearrange the original it would be smart .... maybe E (brain inflammation - neuro still which ever one people want )+ / other symptons ( F M chronic or not... in what ever order) So - E/CMF (/with and resulting; Chronic Myalgia and Fatigue or perhaps E/ MCF (/with and resulting in; Muscle Pain and Chronic Fatigue I think it is important to make the E 'significant' as professionals recognise this and take it seriously automatically as it represents brain function - being key (effecting memory/ fog/ confusion etc) those symptoms as well as the source. When I was being asked to vote on the two versions of E - I voted but I did not realise the significance or really totally understand the difference - I apologise for this. I think using one of them in full name is maybe important but I am not sure.... Just some ideas .... guess it is now or never to look at every angle? in peace, wishing for a powerful solution in partnership with professionals. :D
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