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Name Change News - And Plans for the Road Ahead

  [ 496 votes ]   [ 17 Comments ]
By Rich Carson • www.ProHealth.com • October 30, 2007


Virtually everyone knows that ‘chronic fatigue syndrome’ is a horrible name that harms patients by making light of their suffering. It is a name that has inflicted unimaginable harm and it has lasted too long.

How could people with such a weak sounding disease be as dreadfully sick as cancer patients on chemotherapy? How could they be suffering as much as someone with multiple sclerosis, COPD, or in the end stages of AIDS or kidney disease? Yet according to research occurring around the world, that is exactly how bad CFS really is.

Everybody experiences fatigue from time to time. However, the fatigue of CFS is extreme and pervasive - more importantly, it is only one of many symptoms of the illness. The term ‘chronic FATIGUE syndrome’ trivializes the seriousness of our disease and damages patients every minute of every day. Imagine calling Parkinson’s disease ‘chronic shakiness disease’! Or calling Alzheimer’s disease ‘chronic forgetfulness disease’! It would be reprehensible - a shameful travesty.

The Campaign for a Fair Name is providing an effective vehicle for patients to take control of their destiny by removing the name chronic fatigue syndrome once and for all. The Campaign is gaining ground on several fronts and momentum is building. Here’s what’s happening:

New Advisory Board Resolution

The Name Change Advisory Board (NCAB) approved a resolution this week to amend their earlier recommendation for the new name from ‘myalgic encephalopathy/CFS’ to the acronym ME/CFS. (See "ME/CFS Gets the Nod.") There has been disagreement within the patient community about which ‘E’ in ME is better - encephalomyelitis or encephalopathy. There are good arguments on both sides, but no argument is strong enough that it should cause the name change effort to fail. Recognizing this was an issue, the Board eliminated the argument altogether by proposing the use of the acronym.

As in the NCAB’s original recommendation, ‘CFS’ is included in the proposed acronym for both transitional and logistical reasons - primarily to prevent harming patients involved in disability and medical insurance issues, and to provide continuity in the research area. Over time, the CFS portion of the acronym will be eliminated.

It should be noted that this does not set a precedent, as the largest organization of CFS healthcare professionals in the world changed its name earlier this year to IACFS/ME - without differentiation or discrimination as to which form of ME is better.

The Road Ahead – Making It Happen

The Campaign is still in the education and advocacy phase, and lots of things are happening behind the scenes. Perhaps the most important effort at this time is the formation of the FNIC - the Fair Name Implementation Committee. The FNIC is a highly dedicated and respected group of patient leaders and advocates, doctors, celebrities, and other VIP’s, founded with one goal in mind: to change the name. The Committee’s membership presently stands at 22, and I think you will be impressed to see the names on the roster. These are the people who can make this thing happen.

Although the Committee may eventually choose to work on another important goal - refining the Fukuda case definition of CFS now used in the U.S. to make it consistent with the better, more stringent ME definition used in other countries such as Canada (where the disease is also now called ME/CFS) - the Committee’s first and most important job is to change the name.

Name Change Website – Campaign Central

Campaign for a Fair Name will launch its own website in January 2008 - and the site will be the name change effort’s center of action; all news and information will be posted and updated there regularly for all to see. The site will promote the use of ME/CFS, but patients will have the final word in a vote to accept or reject ME/CFS that will be held in May 2008. Patients did not have a chance to have their voices heard when the disease was named in 1988, so it is imperative that their voices be heard now. I believe this is the most critical part of the Campaign.

Enlisting Patient Volunteers and Support

There is much work ahead: contacting over 450 volunteers who asked to participate in the Campaign; establishing voting procedures; finding an independent company to handle the vote (such as Harris Polls); establishing a petition to gather signatures of name change proponents - just to name a few. But you can mark my words: we are well on our way to losing the taint of ‘chronic fatigue syndrome’ and erasing it from use forever.

One last thing - and this is important: The Campaign needs your support. Without it, patients will continue to be disparaged and belittled by ‘chronic fatigue syndrome’. Please volunteer a little of your time to help us make this thing a reality. E-mail us at CFSnameChange@prohealth.com. Working together, we can accomplish anything.

Wishing you the dignity of a fair name,

Rich Carson
Patient advocate




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Article Comments Post a Comment

ME/CFS is already used in many countries around the world
Posted by: quayman
Oct 30, 2007
The term ME/CFS is already used in many countries around the world. I think it would be a good way to introduce it into the US and some other countries. Eventually hopefully the CFS term may be dropped. In the meantime, people in countries where ME is used regularly need to make sure it's used around the world. I've watched this name change debate for over a decade; CFS was supposed to be a temporary term but purists make it more likely we will be stuck with CFS long-term, IMHO. And if they're not happy with the proposal, people should make other suggestions; long rants about why people don't like ideas are often not very constructive, IMHO - sitting on the sidelines and criticising is easy; coming up with realistic solutions is often much more difficult. And I think useful suggestions should show evidence that practical considerations were kept in mind.
Reply Reply

founders corner
Posted by: maree43
Oct 31, 2007
What a horrible headline. Some people might think that they can be "cured".
Reply Reply

 
Horrible headline
Posted by: saxdon
Oct 31, 2007
/agree

 

 
I agree - horrible name for the article
Posted by: SunflowerJRT
Oct 31, 2007
I agree. You get readers to read the article by fooling them into thinking maybe there's been a new discovery. I was thinking maybe someone was saying your fatigue would disappear because of some type of seasonal change. However, there is a recovery treatment of which I'm on called the Marshall Protocol that is actually reversing the illness. There is a new study site at www.marshallprotocol.com and you can read more about it at www.bacteriality.com including interviews and information about it and you can ask questions about the treatment at www.CureMyTh1.com and you can do a search here at immunesupport.com and find Amy's interview as a recovering patient and read Dr Trevor Marshall's interview here as well. Thanks, Reenie :)

 


Name Change News
Posted by: stellapa1
Oct 31, 2007
The article is very proactive and informative. i was under the impression that there was a name change to CFIDS (Chronic Fatigue Immune Dysfunction Syndrome) that had been passed through legislative means. It is imperative not only a name change occur that understanding of the illnesses (CFIDS & FM) and what they encompass are expounded upon as well. Having Syndrome attached to the diagnosis often creates biased views as to its viability from a medical perspective. Changing the name is a portion of what is needed, treatment that is afforded to other diseases that are disabling, that have a powerful impact on one's life should be given as well noting adaptions to the uniqueness of both. Providing a baseline to work from is only the beginning. i fight each day to survive in all respects of my life. It is a battle that i find true advocacy rare.
Reply Reply

I agree - horrible name for the article
Posted by: SunflowerJRT
Oct 31, 2007
I agree. You get readers to read the article by fooling them into thinking maybe there's been a new discovery. I was thinking maybe someone was saying your fatigue would disappear because of some type of seasonal change. However, there is a recovery treatment of which I'm on called the Marshall Protocol that is actually reversing the illness. There is a new study site at www.marshallprotocol.com and you can read more about it at www.bacteriality.com including interviews and information about it and you can ask questions about the treatment at www.CureMyTh1.com and you can do a search here at immunesupport.com and find Amy's interview as a recovering patient and read Dr Trevor Marshall's interview here as well. Thanks, Reenie :)
Reply Reply

Name Change
Posted by: grammcrkrs
Oct 31, 2007
Who is going to inform our doctors? When i put down that I had M.E. (I spelled it out..but I can't remember how to spell it here!!)..the doctor looked shocked and asked if I'd had enchephalitis...emphasis on the "itis"....I told him no no no...not THAT. It's a new name for CFS. He just looked at me as if I'd lost my marbles. Just wondering who...besides we patients...are going to educate THEM -- because MOST of them don't want to learn from us peon patients. Gramms
Reply Reply

 
Using M.E.
Posted by: quayman
Oct 31, 2007
Well what has happened to some extent in other countries is that doctors just see M.E. written down a lot either on its own or with C.F.S. e.g. M.E./C.F.S. in either the lay media and/or (less so) medical media, and get used to it. They don't ask how it is spelt then. If your doctor can't cope with Encephalomyelitis, you could always use Encephalopathy as in Myalgic Encephalopathy.

M.E. especially with lay people is seen as not just "chronic fatigue"

 


This is a good move...
Posted by: hubcap_halo
Oct 31, 2007
I always say ME/CFS anyway, or just Myalgic Encephalomyelitis. "Chronic Fatigue" and "Syndrome" simply do not describe what I, and millions others, have. I'm arguing more with non-ME/CFS educated doctors, but it's worth it. And all new people in my life, when it's time to tell them about my (hopefully temporary) disability, I say Myalgic Encephalomyelitis--a post viral inflammation of the brain, notably the hypothalamus, which causes major dysfunction of the neurological, endocrine and immune system." I don't even care if that's not the consensus. That's what I have. Not "Fatigue"
Reply Reply

name change for cfs
Posted by: lalalala
Nov 1, 2007
DROP THE CFS. IT WAS WRONG IN THE FIRST PLACE!
Reply Reply

Get all stakeholders on board......
Posted by: lichu3
Nov 1, 2007
From a practical point of view, I feel the CFS community agreeing on a particular name doesn't do much for us in the outside world. We can call ourselves whatever we want but if the public, insurers, the government, medical researchers, and scientists don't agree, where does that leave us? I hope the committee continues to work with these groups, especially those opposed to a name change.
Reply Reply

 
name change
Posted by: tamsy
Nov 3, 2007
I see that all others commenting also rue the CFS label we have had to wear. So why, oh why, do we have to keep that horrid label as we "transition" to ME? If there were a new disease discovered, and people received its diagnosis - after having worn other not-so-accurate diagnoses - wouldn't patient and doctor alike work to correct that diagnosis in the medical and disability files?

I, for one, would be thrilled to completely rid myself of the CFS label. Even if it required extra paperwork, appeals, etc., I would feel that was MY part in making the transition happen. That's how stigmatizing CFS is to me.

Also, wouldn't it be more appropriate to use the full terminology of Myalgic Encephalomyelitis as a one-time transition? If we use ME/CFS, we build mountains of transition time. For one, we still carry the stigma of CFS. Two, if just the acronym ME is used, who in the general public is going to know what that is? We will have to spend even more transition time to educate the public as to what the ME stands for.

What term was used when MS was discovered? I'm not sure, but I would venture to say that the full term of Multiple Sclerosis was initially used, then later abbreviated to MS. Now, almost anyone knows what MS means. Let's don't go about this backwards by using an acronym almost no one knows the meaning of.

Let's get off the fence, and embrace the full terminology of an accurate diagnosis: Myalgic Encephalomyelitis. People with Type I Diabetes were once thought to have psychosomatic hysteria. Did they have to go through a transition period of carrying the joint diagnoses of Diabetes Mellitis/Psychosomatic Hysteria or DM/PH? Nonsense!!

Nor should we!

 


The Name
Posted by: grannycfs
Nov 3, 2007
I get very excited seeing the change that is coming and that the defintion will also becorrected to reflect the true nature of this horrible disorder. I will be more excited when I learn that the CDC is using the term myalgic encephalomyelitis which is a disorder that was defined decades ago and long before there was the erroneous name CFS. Then the CFIDS Association should follow suit by changing its name to the American M.E. Association. Then there will be dancing in the streets. Those who have to use walkers or wheelchairs can still whip around the streets. I have a bright red walker that I can move pretty fast with when needed. I'll supply the confetti or bird seed or whatever appropriate to toss in the air in celebration. At long last, the CDC and NIH and get to work and determine what is going on in our bodies. We cannot expect a cure just like there is no cure or even a really good knowledge of what causes many disorders such as M.S. But when real research is applied to what we are dealing with - then - and only then - can we have real hope. Nancy Henson
Reply Reply

Myalgic Encephalomyelitis
Posted by: tansy
Nov 5, 2007
Myalgic Encephalomyelitis is the name used by the W.H.O.. If ME is going to be used then please can we stick to the version already accepted by the W.H.O. - Myalgic Encephalomyelitis.
Reply Reply

name change
Posted by: bibbbyk
Nov 25, 2007
Allowing patients the chance to change the name yet again by voting is a terrible idea. You are only going to create more confusion than ever, and are going to end up with about 4 or 5 different names that different groups will insist on using. Stick with ME/CFS. Period. You do not have to takre this advice, but remember....you WERE told.
Reply Reply


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