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Letters From Our Readers – Name Change Discussion 10-3-07

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A Few Brief Comments

n I like the CFIDS/ME name. – Joyce

n This new proposed name change sounds good to me – practically anything but chronic fatigue syndrome. If encephalopathy is more diagnostically accurate than encephalomyelitis, then have that because when doctors find out the patient doesn’t have encephalomyelitis, they still may not take the patient seriously. – Pamela

n Anything, even Mary Poppins Disease, is better than anything with the words Chronic Fatigue in it. I am so tired of disbelieving, condescending, arrogant doctors who are happy to remain ignorant just because of the trivializing name! – Phyllis

n ME could also stand for “More Exhausted” or “Most Exasperated.” (Smile) I certainly hope we soon find a better name than chronic fatigue syndrome. – Leah

n I think that the ME designation is very good for CFS sufferers, since it carries a lot more professional weight. Leaving it CFS invites responses of, “Oh, I’m always tired, too, but I still can work” or having physicians not take you seriously. – C59442

n I have been suffering with FMS/ME for seven years. I truly believe that the name Chronic Fatigue Syndrome grossly understates this illness. My vote is 100% for ME because it covers both Myalgic Encephalopathy AND Myalgic Encephalomyolitis. I believe that it’s extremely important for these two names to become very visible and familiar along with all of the symptoms of this devastating illness. – Gabriela


Joining the Chorus

I would like to add my name to the chorus of CFS-ME sufferers who detest the name Chronic Fatigue Syndrome because it has caused us so much flack from people and doctors who are largely ignorant of the problem. As one of your readers/patients, smartly quipped, “It’s like calling Parkinson’s Disease Chronic shaking syndrome.” That about nailed it, I thought. Anyway, we who suffer from this horrible disorder are grateful for the tremendous work you people are doing on our behalf to influence, educate and lobby governments and the medical profession on the severity and science of this disease. Keep up the great work! – David


Name Should be Standard Worldwide

Please do not throw a monkey wrench into the long-awaited name change. The name should be standard throughout the world and medical community. The name has always been, and should remain Myalgic Encephalomyelitis. Period. Anyone with this disease falls under the umbrella of this name. Drop CFS altogether. It was forced upon us…and can only continue to degrade, humiliate, confuse and alienate us from the medical community, friends and family. And the press could no longer have a field day and use the “F” word to associate this disease with people with fatigue or depression in order to sell papers with derogatory statements about women and malingerers… What other disease hits the society pages?

Please, make the leap. People will adjust without trouble, no one will get left behind, and people on disability can count on our government to understand the name change. People may even ‘get it’ that ME is a serious illness. – Mona


It’s ME for Me

I live in the UK and have been severely ill for 25 years. I was misdiagnosed for 12 years. I eventually went privately to see a specialist who gave me the ‘official’ diagnosis of ME. The specialist had ME herself, is patron of many ME organizations in the UK, and is very highly regarded.

I will always refer to my illness as ‘ME’ regardless of any medical opinion to the contrary. I honestly don’t care if it’s not medically correct because there is no inflammation detected in the brain. Of the many sufferers I am in contact with 90% refer to it as ME. I feel that CFS doesn’t come close, in any way, to describe this illness. The response of non-sufferers is, “Well, I sometimes feel tired too” because they only hear the word ‘fatigue’ and not the ‘chronic’ or ‘syndrome’. Fatigue does not explain the complete and utter exhaustion experienced by sufferers of this debilitating condition.

It’s bad enough having an illness that is controversial, that there is no test for and no cure, without all this debate about a name change. Many people in the UK understand the term ME but not CFS and definitely not CFIDS, Royal Free Disease, EB virus etc. If you put this to a vote, my vote will be for ME every time and so will thousands of others in the UK. We would prefer the energy, resources and expertise to be spent more productively on research for cause and cure rather than waste it on discussing what to call it. – Yvonne


Proposed Name Too Long

Many thanks to the people who are voicing their opinions. Personally, I find it very cumbersome to rename CFS as ME-CFS as it is much, much too long a name and it most likely could confuse a doctor about its real meaning. My fear is that a doctor would just gloss over this new name change as much as calling it CFS. I don’t have any good suggestions, unfortunately, but I do feel that the proposed name change is so cumbersome, lengthy, and unusable due to its drawn out name that it also will need a name change down the road. – Emily


ME Too Hard to Pronounce

ME or CFS – who cares? ME is actually too hard to pronounce and very medical. CFS is not great, but it works and it should not change until CFS is really understood or identified. CFS is a real problem that doctors really do not know how to deal with because the symptoms come and go and are very unpredictable. It is a disease that is very debilitating and could destroy most people, physically and emotionally. A supporting medical doctor, psychiatrist, family and money is the only way to beat this devastating disease. To sum it up, after 22 years of suffering, I see this disease as an inflammation of the nervous system and immune system and I am not a doctor. Because people do not die like cancer, this affliction is not given the attention it deserves. – Harry


Name Needs to Identify Illness

I am in favor of changing the name of Chronic Fatigue Syndrome to “something,” however, with the new evidence that it might be caused by a stomach virus, I don’t see how it could be called ME. The name really needs to identify the illness. If you have cancer or MS, people can identify with it and they know what it is. With Chronic Fatigue Syndrome, people answer you with “I’m tired too, big deal.” We need a name that describes the illness and that will give us sufferers the respect that we deserve in the community. – Kathy


“Whole Body and Life Disease”

I am all for a name change ASAP but how can we give it a proper name without knowing what causes it? Whatever it turns out to be, it just cannot have the name fatigue in it. We know it causes a host of immune problems and is disabling. We know that patients have high viral antigens and cognitive problems. We believe certain chemical reactions are creating havoc on the natural balance of our body systems. We know it requires a major life style change to manage it. We know it is very costly causing many to lose all they have. “Whole Body and Life Disease” comes to my mind. I give up. My cognitive limitations just will not take me to finding a great name. – Pam

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